User login
Enhancing Access to Yoga for Older Male Veterans After Cancer: Examining Beliefs About Yoga
Yoga is an effective clinical intervention for cancer survivors. Studies indicate a wide range of benefits, including improvements in physical functioning, emotional well-being and overall quality of life.1-7 Two-thirds of National Cancer Institute designated comprehensive cancer centers offer yoga on-site.8 Yoga is endorsed by the National Comprehensive Cancer Network and American Society of Clinical Oncology for managing symptoms, such as cancer-related anxiety and depression and for improving overall quality of life.9,10
Although the positive effects of yoga on cancer patients are well studied, most published research in this area reports on predominantly middle-aged women with breast cancer.11,12 Less is known about the use of yoga in other groups of cancer patients, such as older adults, veterans, and those from diverse racial or ethnic backgrounds. This gap in the literature is concerning considering that the majority of cancer survivors are aged 60 years or older, and veterans face unique risk factors for cancer associated with herbicide exposure (eg, Agent Orange) and other military-related noxious exposures.13,14 Older cancer survivors may have more difficulty recovering from treatment-related adverse effects, making it especially important to target recovery efforts to older adults.15 Yoga can be adapted for older cancer survivors with age-related comorbidities, similar to adaptations made for older adults who are not cancer survivors but require accommodations for physical limitations.16-20 Similarly, yoga programs targeted to racially diverse cancer survivors are associated with improved mood and well-being in racially diverse cancer survivors, but studies suggest community engagement and cultural adaptation may be important to address the needs of culturally diverse cancer survivors.21-23
Yoga has been increasingly studied within the Veterans Health Administration (VHA) for treatment of posttraumatic stress disorder (PTSD) and has been found effective in reducing symptoms through the use of trauma-informed and military-relevant instruction as well as a military veteran yoga teacher.24-26 This work has not targeted older veterans or cancer survivors who may be more difficult to recruit into such programs, but who would nevertheless benefit.
Clinically, the VHA whole health model is providing increased opportunities for veterans to engage in holistic care including yoga.27 Resources include in-person yoga classes (varies by facility), videos, and handouts with practices uniquely designed for veterans or wounded warriors. As clinicians increasingly refer veterans to these programs, it will be important to develop strategies to engage older veterans in these services.
One important strategy to enhancing access to yoga for older veterans is to consider beliefs about yoga. Beliefs about yoga or general expectations about the outcomes of yoga may be critical to consider in expanding access to yoga in underrepresented groups. Beliefs about yoga may include beliefs about yoga improving health, yoga being difficult or producing discomfort, and yoga involving specific social norms.28 For example, confidence in one’s ability to perform yoga despite discomfort predicted class attendance and practice in a sample of 32 breast cancer survivors.29 Relatedly, positive beliefs about the impact of yoga on health were associated with improvements in mood and quality of life in a sample of 66 cancer survivors.30
The aim of this study was to examine avenues to enhance access to yoga for older veterans, including those from diverse backgrounds, with a focus on the role of beliefs. In the first study we investigate the association between beliefs about and barriers to yoga in a group of older cancer survivors, and we consider the role of demographic and clinical variables in such beliefs and how education may alter beliefs. In alignment with the whole health model of holistic health, we posit that yoga educational materials and resources may contribute to yoga beliefs and work to decrease these barriers. We apply these findings in a second study that enrolled older veterans in yoga and examining the impact of program participation on beliefs and the role of beliefs in program outcomes. In the discussion we return to consider how to increase access to yoga to older veterans based on these findings.
Methods
Study 1 participants were identified from VHA tumor registries. Eligible patients had head and neck, esophageal, gastric, or colorectal cancers and were excluded if they were in hospice care, had dementia, or had a psychotic spectrum disorder. Participants completed a face-to-face semistructured interview at 6, 12, and 18 months after their cancer diagnosis with a trained interviewer. Complete protocol methods, including nonresponder information, are described elsewhere.31
Questions about yoga were asked at the 12 month postdiagnosis interview. Participants were read the following: “Here is a list of services some patients use to recover from cancer. Please tell me if you have used any of these.” The list included yoga, physical therapy, occupational therapy, exercise, meditation, or massage therapy. Next participants were provided education about yoga via the following description: “Yoga is a practice of stress reduction and exercise with stretching, holding positions and deep breathing. For some, it may improve your sleep, energy, flexibility, anxiety, and pain. The postures are done standing, sitting, or lying down. If needed, it can be done all from a chair.” We then asked whether they would attend if yoga was offered at the VHA hospital (yes, no, maybe). Participants provided brief responses to 2 open-ended questions: (“If I came to a yoga class, I …”; and “Is there anything that might make you more likely to come to a yoga class?”) Responses were transcribed verbatim and entered into a database for qualitative analysis. Subsequently, participants completed standardized measures of health-related quality of life and beliefs about yoga as described below.
Study 2 participants were identified from VHA tumor registries and a cancer support group. Eligible patients had a diagnosis of cancer (any type except basil cell carcinoma) within the previous 3 years and were excluded if they were in hospice care, had dementia, or had a psychotic spectrum disorder. Participants completed face-to-face semistructured interviews with a trained interviewer before and after participation in an 8-week yoga group that met twice per week. Complete protocol methods are described elsewhere.16 This paper focuses on 28 of the 37 enrolled patients for whom we have complete pre- and postclass interview data. We previously reported on adaptations made to yoga in our pilot group of 14 individuals, who in this small sample did not show statistically significant changes in their quality of life from before to after the class.16 This analysis includes those 14 individuals and 14 who participated in additional classes, focusing on beliefs, which were not previously reported.
Measures
Participants reported their age, gender, ethnicity (Hispanic/Latino or not), race, and level of education. Information about the cancer diagnosis, American Joint Committee on Cancer (AJCC) cancer stage, and treatments was obtained from the medical record. The Physical Function and Anxiety Subscales from the Patient-Reported Outcomes Measurement Information System were used to measure health-related quality of life (HRQoL).32-34 Items are rated on a Likert scale from 1 (not at all) to 5 (very much).
The Beliefs About Yoga Scale (BAYS) was used to measure beliefs about the outcomes of engaging in yoga.28 The 11-item scale has 3 factors: expected health benefits (5 items), expected discomfort (3 items), and expected social norms (3 items). Items from the expected discomfort and expected social norms are reverse scored so that a higher score indicates more positive beliefs. To reduce participant burden, in study 1 we selected 1 item from each factor with high factor loadings in the original cross-validation sample.28 It would improve my overall health (Benefit, factor loading = .89); I would have to be more flexible to take a class (Discomfort, factor loading = .67); I would be embarrassed in a class (Social norms, factor loading = .75). Participants in study 2 completed the entire 11-item scale. Items were summed to create subscales and total scales.
Analysis
Descriptive statistics were used in study 1 to characterize participants’ yoga experience and interest. Changes in interest pre- and posteducation were evaluated with χ2 comparison of distribution. The association of beliefs about yoga with 3 levels of interest (yes, no, maybe) was evaluated through analysis of variance (ANOVA) comparing the mean score on the summed BAYS items among the 3 groups. The association of demographic (age, education, race) and clinical factors (AJCC stage, physical function) with BAYS was determined through multivariate linear regression.
For analytic purposes, due to small subgroup sample sizes we compared those who identified as non-Hispanic White adults to those who identified as African American/Hispanic/other persons. To further evaluate the relationship of age to yoga beliefs, we examined beliefs about yoga in 3 age groups (40-59 years [n = 24]; 60-69 years [n = 58]; 70-89 years [n = 28]) using ANOVA comparing the mean score on the summed BAYS items among the 3 groups. In study 2, changes in interest before and after the yoga program were evaluated with paired t tests and repeated ANOVA, with beliefs about yoga prior to class as a covariate. The association of demographic and clinical factors with BAYS was determined as in the first sample through multivariate linear regression, except the variable of race was not included due to small sample size (ie, only 3 individuals identified as persons of color).
Thematic analysis in which content-related codes were developed and subsequently grouped together was applied to the data of 110 participants who responded to the open-ended survey questions in study 1 to further illuminate responses to closed-ended questions.35 Transcribed responses to the open-ended questions were transferred to a spreadsheet. An initial code book with code names, definitions, and examples was developed based on an inductive method by one team member (EA).35 Initially, coding and tabulation were conducted separately for each question but it was noted that content extended across response prompts (eg, responses to question 2 “What might make you more likely to come?” were spontaneously provided when answering question 1), thus coding was collapsed across questions. Next, 2 team members (EA, KD) coded the same responses, meeting weekly to discuss discrepancies. The code book was revised following each meeting to reflect refinements in code names and definitions, adding newly generated codes as needed. The process continued until consensus and data saturation was obtained, with 90% intercoder agreement. Next, these codes were subjected to thematic analysis by 2 team members (EA, KD) combining codes into 6 overarching themes. The entire team reviewed the codes and identified 2 supra themes: positive beliefs or facilitators and negative beliefs or barriers.
Consistent with the concept of reflexivity in qualitative research, we acknowledge the influence of the research team members on the qualitative process.36 The primary coding team (EA, KD) are both researchers and employees of Veterans Affairs Boston Healthcare System who have participated in other research projects involving veterans and qualitative analyses but are not yoga instructors or yoga researchers.
Results
Study 1
The sample of 110 military veterans was mostly male (99.1%) with a mean (SD) age of 64.9 (9.4) years (range, 41-88)(Table 1). The majority (70.9%) described their race/ethnicity as White, non-Hispanic followed by Black/African American (18.2%) and Hispanic (8.2%) persons; 50.0% had no more than a high school education. The most common cancer diagnoses were colorectal (50.9%), head and neck (39.1%), and esophageal and gastric (10.0%) and ranged from AJCC stages I to IV.
When first asked, the majority of participants (78.2%) reported that they were not interested in yoga, 16.4% reported they might be interested, and 5.5% reported they had tried a yoga class since their cancer diagnosis. In contrast, 40.9% used exercise, 32.7% used meditation, 14.5% used physical or occupational therapy, and 11.8% used massage therapy since their cancer diagnosis.
After participants were provided the brief scripted education about yoga, the level of interest shifted: 46.4% not interested, 21.8% interested, and 31.8% definitely interested, demonstrating a statistically significant shift in interest following education (χ2 = 22.25, P < .001) (Figure 1). Those with the most positive beliefs about yoga were most likely to indicate interest. Using the BAYS 3-item survey, the mean (SD) for the definitely interested, might be interested, and not interested groups was 15.1 (3.2), 14.1 (3.2), and 12.3 (2.5), respectively (F = 10.63, P < .001).
A multivariable regression was run to examine possible associations between participants’ demographic characteristics, clinical characteristics, and beliefs about yoga as measured by the 3 BAYS items (Table 2). Higher expected health benefits of yoga was associated with identifying as
Six themes were identified in qualitative analysis of semistructured interviews reflecting older veterans’ beliefs about yoga, which were grouped into the following suprathemes of positive vs negative beliefs (Figure 2). Exemplar responses appear in Table 3.
Study 2 Intervention Sample
This sample of 28 veterans was mostly male (96.4%) with a mean (SD) age of 69.2 (10.9) years (range, 57-87). The majority (89.3%) described their race as White, followed by Black/African American (10.7%); no participants self-identified in other categories for race/ethnicity. Twelve veterans (42.9%) had no more than a high school education. The most common cancer diagnosis was genitourinary (35.7%) and the AJCC stage ranged from I to IV.
We employed information learned in study 1 to enhance access in study 2. We mailed letters to 278 veterans diagnosed with cancer in the previous 3 years that provided education about yoga based on study 1 findings. Of 207 veterans reached by phone, 133 (64%) stated they were not interested in coming to a yoga class; 74 (36%) were interested, but 30 felt they were unable to attend due to obstacles such as illness or travel. Ultimately 37 (18%) veterans agreed and consented to the class, and 28 (14%) completed postclass surveys.
In multivariate regression, higher expected health benefits of yoga were associated with higher physical function, lower concern about expected discomfort was also associated with higher physical function as well as higher education; similarly, lower concern about expected social norms was associated with higher physical function. Age was not associated with any of the BAYS factors.
Beliefs about yoga improved from before to after class for all 3 domains with greater expected benefit and lower concerns about discomfort or social norms:
Discussion
Yoga is an effective clinical intervention for addressing some long-term adverse effects in cancer survivors, although the body of research focuses predominantly on middle aged, female, White, college-educated breast cancer survivors. There is no evidence to suggest yoga would be less effective in other groups, but it has not been extensively studied in survivors from diverse subgroups. Beliefs about yoga are a factor that may enhance interest in yoga interventions and research, and measures aimed at addressing potential beliefs and fears may capture information that can be used to support older cancer survivors in holistic health. The aims of this study were to examine beliefs about yoga in 2 samples of older cancer survivors who received VHA care. The main findings are (1) interest in yoga was initially low and lower than that of other complementary or exercise-based interventions, but increased when participants were provided brief education about yoga; (2) interest in yoga was associated with beliefs about yoga with qualitative comments illuminating these beliefs; (3) demographic characteristics (education, race) and physical function were associated with beliefs about yoga; and (4) positive beliefs about yoga increased following a brief yoga intervention and was associated with improvements in physical function.
Willingness to consider a class appeared to shift for some older veterans when they were presented brief information about yoga that explained what is involved, how it might help, and that it could be done from a chair if needed. These findings clearly indicated that when trying to enhance participation in yoga in clinical or research programs, it will be important that recruitment materials provide such information. This finding is consistent with the qualitative findings that reflected a lack of knowledge or skepticism about benefits of yoga among some participants. Given the finding that physical function was associated with beliefs about yoga and was also a prominent theme in qualitative analyses,
Age was not associated with beliefs about yoga in either study. Importantly, in a more detailed study 1 follow-up analysis, beliefs about yoga were equivalent for aged > 70 years compared with those aged 40 to 69 years. It is not entirely clear why older adults have been underrepresented in studies of yoga in cancer survivors. However, older adults are vastly underrepresented in clinical trials for many health conditions, even though they are more likely to experience many diseases, including cancer.37 A new National Institutes of Health policy requires that individuals of all ages, including older adults, must be included in all human subjects research unless there are scientific reasons not to include them.38 It is therefore imperative to consider strategies to address underrepresentation of older adults.
Qualitative findings here suggest it will be important to consider logistical barriers including transportation and affordability as well as adaptations requested by older adults (eg, preferences for older teachers).18
Although our sample was small, we also found that adults from diverse racial and ethnic backgrounds had more positive beliefs about yoga, such that this finding should be interpreted with caution. Similar to older adults, individuals from diverse racial and ethnic groups are also underrepresented in clinical trials and may have lower access to complementary treatments. Cultural and linguistic adaptations and building community partnerships should be considered in both recruitment and intervention delivery strategies.40We learned that education about yoga may increase interest and that it is possible to recruit older veterans to yoga class. Nevertheless, in study 2, our rate of full participation was low, with only about 1 in 10 participating. Additional efforts to enhance beliefs about yoga and to addresslogistical barriers (offering telehealth yoga) are needed to best reach older veterans.
Limitations
These findings have several limitations. First, participants were homogeneous in age, gender, race/ethnicity and veteran status, which provides a window into this understudied population but limits generalizability and our ability to control across populations. Second, the sample size limited the ability to conduct subgroup and interaction analyses, such as examining potential differential effects of cancer type, treatment, and PTSD on yoga beliefs or to consider the relationship of yoga beliefs with changes in quality of life before and after the yoga intervention in study 2. Additionally, age was not associated with beliefs about yoga in these samples that of mostly older adults. We were able to compare middle-aged and older adults but could not compare beliefs about yoga to adults aged in their 20s and 30s. Last, our study excluded people with dementia and psychotic disorders. Further research is needed to examine yoga for older cancer survivors who have these conditions.
Conclusions
Education that specifically informs potential participants about yoga practice, potential modifications, and potential benefits, as well as adaptations to programs that address physical and logistical barriers may be useful in increasing access to and participation in yoga for older Veterans who are cancer survivors.
Acknowledgments/Funding
The authors have no financial or personal relationships to disclose. This work was supported by the US Department of Veterans Affairs (VA) Rehabilitation Research and Development Service. This material is the result of work supported with resources and the use of facilities at the VA Boston Healthcare System, Bedford VA Medical Center, and Michael E. DeBakey VA Medical Center in Houston, Texas. We thank the members of the Veterans Cancer Rehabilitation Study (Vetcares) Research teams in Boston and in Houston and the veterans who have participated in our research studies and allow us to contribute to their health care.
1. Mustian KM, Sprod LK, Janelsins M, et al. Multicenter, randomized controlled trial of yoga for sleep quality among cancer survivors. J Clin Oncol. 2013;31(26):3233-3241. doi:10.1200/JCO.2012.43.7707
2. Chandwani KD, Thornton B, Perkins GH, et al. Yoga improves quality of life and benefit finding in women undergoing radiotherapy for breast cancer. J Soc Integr Oncol. 2010;8(2):43-55.
3. Erratum: Primary follicular lymphoma of disguised as multiple miliary like lesions: A case report and review of literature. Indian J Pathol Microbiol. 2018;61(4):643. doi:10.4103/0377-4929.243009
4. Eyigor S, Uslu R, Apaydın S, Caramat I, Yesil H. Can yoga have any effect on shoulder and arm pain and quality of life in patients with breast cancer? A randomized, controlled, single-blind trial. Complement Ther Clin Pract. 2018;32:40-45. doi:10.1016/j.ctcp.2018.04.010
5. Loudon A, Barnett T, Piller N, Immink MA, Williams AD. Yoga management of breast cancer-related lymphoedema: a randomised controlled pilot-trial. BMC Complement Altern Med. 2014;14:214. Published 2014 Jul 1. doi:10.1186/1472-6882-14-214
6. Browning KK, Kue J, Lyons F, Overcash J. Feasibility of mind-body movement programs for cancer survivors. Oncol Nurs Forum. 2017;44(4):446-456. doi:10.1188/17.ONF.446-456
7. Rosenbaum MS, Velde J. The effects of yoga, massage, and reiki on patient well-being at a cancer resource center. Clin J Oncol Nurs. 2016;20(3):E77-E81. doi:10.1188/16.CJON.E77-E81
8. Yun H, Sun L, Mao JJ. Growth of integrative medicine at leading cancer centers between 2009 and 2016: a systematic analysis of NCI-designated comprehensive cancer center websites. J Natl Cancer Inst Monogr. 2017;2017(52):lgx004. doi:10.1093/jncimonographs/lgx004
9. Sanft T, Denlinger CS, Armenian S, et al. NCCN guidelines insights: survivorship, version 2.2019. J Natl Compr Canc Netw. 2019;17(7):784-794. doi:10.6004/jnccn.2019.0034
10. Lyman GH, Greenlee H, Bohlke K, et al. Integrative therapies during and after breast cancer treatment: ASCO endorsement of the SIO clinical practice guideline. J Clin Oncol. 2018;36(25):2647-2655. doi:10.1200/JCO.2018.79.2721
11. Culos-Reed SN, Mackenzie MJ, Sohl SJ, Jesse MT, Zahavich AN, Danhauer SC. Yoga & cancer interventions: a review of the clinical significance of patient reported outcomes for cancer survivors. Evid Based Complement Alternat Med. 2012;2012:642576. doi:10.1155/2012/642576
12. Danhauer SC, Addington EL, Cohen L, et al. Yoga for symptom management in oncology: a review of the evidence base and future directions for research. Cancer. 2019;125(12):1979-1989. doi:10.1002/cncr.31979
13. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2019. CA Cancer J Clin. 2019;69(1):7-34. doi:10.3322/caac.21551
14. US Department of Veterans Affairs. Veterans’ diseases associated with Agent Orange. Updated June 16, 2021. Accessed September 22, 2021. https://www.publichealth.va.gov/exposures/agentorange/conditions
15. Deimling GT, Arendt JA, Kypriotakis G, Bowman KF. Functioning of older, long-term cancer survivors: the role of cancer and comorbidities. J Am Geriatr Soc. 2009;57(suppl 2):S289-S292. doi:10.1111/j.1532-5415.2009.02515.x
16. King K, Gosian J, Doherty K, et al. Implementing yoga therapy adapted for older veterans who are cancer survivors. Int J Yoga Therap. 2014;24:87-96.
17. Wertman A, Wister AV, Mitchell BA. On and off the mat: yoga experiences of middle-aged and older adults. Can J Aging. 2016;35(2):190-205. doi:10.1017/S0714980816000155
18. Chen KM, Wang HH, Li CH, Chen MH. Community vs. institutional elders’ evaluations of and preferences for yoga exercises. J Clin Nurs. 2011;20(7-8):1000-1007. doi:10.1111/j.1365-2702.2010.03337.x
19. Saravanakumar P, Higgins IJ, Van Der Riet PJ, Sibbritt D. Tai chi and yoga in residential aged care: perspectives of participants: A qualitative study. J Clin Nurs. 2018;27(23-24):4390-4399. doi:10.1111/jocn.14590
20. Fan JT, Chen KM. Using silver yoga exercises to promote physical and mental health of elders with dementia in long-term care facilities. Int Psychogeriatr. 2011;23(8):1222-1230. doi:10.1017/S1041610211000287
21. Taylor TR, Barrow J, Makambi K, et al. A restorative yoga intervention for African-American breast cancer survivors: a pilot study. J Racial Ethn Health Disparities. 2018;5(1):62-72. doi:10.1007/s40615-017-0342-4
22. Moadel AB, Shah C, Wylie-Rosett J, et al. Randomized controlled trial of yoga among a multiethnic sample of breast cancer patients: effects on quality of life. J Clin Oncol. 2007;25(28):4387-4395. doi:10.1200/JCO.2006.06.6027
23. Smith SA, Whitehead MS, Sheats JQ, Chubb B, Alema-Mensah E, Ansa BE. Community engagement to address socio-ecological barriers to physical activity among African American breast cancer survivors. J Ga Public Health Assoc. 2017;6(3):393-397. doi:10.21633/jgpha.6.312
24. Cushing RE, Braun KL, Alden C-Iayt SW, Katz AR. Military-Tailored Yoga for Veterans with Post-traumatic Stress Disorder. Mil Med. 2018;183(5-6):e223-e231. doi:10.1093/milmed/usx071
25. Davis LW, Schmid AA, Daggy JK, et al. Symptoms improve after a yoga program designed for PTSD in a randomized controlled trial with veterans and civilians. Psychol Trauma. 2020;12(8):904-912. doi:10.1037/tra0000564
26. Chopin SM, Sheerin CM, Meyer BL. Yoga for warriors: An intervention for veterans with comorbid chronic pain and PTSD. Psychol Trauma. 2020;12(8):888-896. doi:10.1037/tra0000649
27. US Department of Veterans Affairs. Whole health. Updated September 13, 2021. Accessed September 22, 2021. https://www.va.gov/wholehealth
28. Sohl SJ, Schnur JB, Daly L, Suslov K, Montgomery GH. Development of the beliefs about yoga scale. Int J Yoga Therap. 2011;(21):85-91.
29. Cadmus-Bertram L, Littman AJ, Ulrich CM, et al. Predictors of adherence to a 26-week viniyoga intervention among post-treatment breast cancer survivors. J Altern Complement Med. 2013;19(9):751-758. doi:10.1089/acm.2012.0118
30. Mackenzie MJ, Carlson LE, Ekkekakis P, Paskevich DM, Culos-Reed SN. Affect and mindfulness as predictors of change in mood disturbance, stress symptoms, and quality of life in a community-based yoga program for cancer survivors. Evid Based Complement Alternat Med. 2013;2013:419496. doi:10.1155/2013/419496
31. Naik AD, Martin LA, Karel M, et al. Cancer survivor rehabilitation and recovery: protocol for the Veterans Cancer Rehabilitation Study (Vet-CaRes). BMC Health Serv Res. 2013;13:93. Published 2013 Mar 11. doi:10.1186/1472-6963-13-93
32. Northwestern University. PROMIS Health Organization and the PROMIS Cooperative Group. PROMIS Short Form v2.0 - Physical Function 6b. Accessed September 24, 2021. https://www.healthmeasures.net/index.php?option=com_instruments&view=measure&id=793&Itemid=992
33. Northwestern University. PROMIS Health Organization and the PROMIS Cooperative Group. PROMIS Short Form v1.0 - Anxiety 6a. Accessed September 24, 2021. https://www.healthmeasures.net/index.php?option=com_instruments&view=measure&id=145&Itemid=992
34. Northwestern University. PROMIS Health Organization and the PROMIS Cooperative Group. PROMIS-43 Profile v2.1. Accessed September 24, 2021. https://www.healthmeasures.net/index.php?option=com_instruments&view=measure&id=858&Itemid=992
35. Todd NJ, Jones SH, Lobban FA. “Recovery” in bipolar disorder: how can service users be supported through a self-management intervention? A qualitative focus group study. J Ment Health. 2012;21(2):114-126. doi:10.3109/09638237.2011.621471
36. Finlay L. “Outing” the researcher: the provenance, process, and practice of reflexivity. Qual Health Res. 2002;12(4):531-545. doi:10.1177/104973202129120052
37. Herrera AP, Snipes SA, King DW, Torres-Vigil I, Goldberg DS, Weinberg AD. Disparate inclusion of older adults in clinical trials: priorities and opportunities for policy and practice change. Am J Public Health. 2010;10(suppl 1):S105-S112. doi:10.2105/AJPH.2009.162982
38. National Institutes of Health. Revision: NIH policy and guidelines on the inclusion of individuals across the lifespan as participants in research involving human subjects. Published December 19, 2017. Accessed September 22, 2021. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-18-116.html
39. Townsley CA, Selby R, Siu LL. Systematic review of barriers to the recruitment of older patients with cancer onto clinical trials. J Clin Oncol. 2005;23(13):3112-3124. doi:10.1200/JCO.2005.00.141
40. Vuong I, Wright J, Nolan MB, et al. Overcoming barriers: evidence-based strategies to increase enrollment of underrepresented populations in cancer therapeutic clinical trials-a narrative review. J Cancer Educ. 2020;35(5):841-849. doi:10.1007/s13187-019-01650-y
Yoga is an effective clinical intervention for cancer survivors. Studies indicate a wide range of benefits, including improvements in physical functioning, emotional well-being and overall quality of life.1-7 Two-thirds of National Cancer Institute designated comprehensive cancer centers offer yoga on-site.8 Yoga is endorsed by the National Comprehensive Cancer Network and American Society of Clinical Oncology for managing symptoms, such as cancer-related anxiety and depression and for improving overall quality of life.9,10
Although the positive effects of yoga on cancer patients are well studied, most published research in this area reports on predominantly middle-aged women with breast cancer.11,12 Less is known about the use of yoga in other groups of cancer patients, such as older adults, veterans, and those from diverse racial or ethnic backgrounds. This gap in the literature is concerning considering that the majority of cancer survivors are aged 60 years or older, and veterans face unique risk factors for cancer associated with herbicide exposure (eg, Agent Orange) and other military-related noxious exposures.13,14 Older cancer survivors may have more difficulty recovering from treatment-related adverse effects, making it especially important to target recovery efforts to older adults.15 Yoga can be adapted for older cancer survivors with age-related comorbidities, similar to adaptations made for older adults who are not cancer survivors but require accommodations for physical limitations.16-20 Similarly, yoga programs targeted to racially diverse cancer survivors are associated with improved mood and well-being in racially diverse cancer survivors, but studies suggest community engagement and cultural adaptation may be important to address the needs of culturally diverse cancer survivors.21-23
Yoga has been increasingly studied within the Veterans Health Administration (VHA) for treatment of posttraumatic stress disorder (PTSD) and has been found effective in reducing symptoms through the use of trauma-informed and military-relevant instruction as well as a military veteran yoga teacher.24-26 This work has not targeted older veterans or cancer survivors who may be more difficult to recruit into such programs, but who would nevertheless benefit.
Clinically, the VHA whole health model is providing increased opportunities for veterans to engage in holistic care including yoga.27 Resources include in-person yoga classes (varies by facility), videos, and handouts with practices uniquely designed for veterans or wounded warriors. As clinicians increasingly refer veterans to these programs, it will be important to develop strategies to engage older veterans in these services.
One important strategy to enhancing access to yoga for older veterans is to consider beliefs about yoga. Beliefs about yoga or general expectations about the outcomes of yoga may be critical to consider in expanding access to yoga in underrepresented groups. Beliefs about yoga may include beliefs about yoga improving health, yoga being difficult or producing discomfort, and yoga involving specific social norms.28 For example, confidence in one’s ability to perform yoga despite discomfort predicted class attendance and practice in a sample of 32 breast cancer survivors.29 Relatedly, positive beliefs about the impact of yoga on health were associated with improvements in mood and quality of life in a sample of 66 cancer survivors.30
The aim of this study was to examine avenues to enhance access to yoga for older veterans, including those from diverse backgrounds, with a focus on the role of beliefs. In the first study we investigate the association between beliefs about and barriers to yoga in a group of older cancer survivors, and we consider the role of demographic and clinical variables in such beliefs and how education may alter beliefs. In alignment with the whole health model of holistic health, we posit that yoga educational materials and resources may contribute to yoga beliefs and work to decrease these barriers. We apply these findings in a second study that enrolled older veterans in yoga and examining the impact of program participation on beliefs and the role of beliefs in program outcomes. In the discussion we return to consider how to increase access to yoga to older veterans based on these findings.
Methods
Study 1 participants were identified from VHA tumor registries. Eligible patients had head and neck, esophageal, gastric, or colorectal cancers and were excluded if they were in hospice care, had dementia, or had a psychotic spectrum disorder. Participants completed a face-to-face semistructured interview at 6, 12, and 18 months after their cancer diagnosis with a trained interviewer. Complete protocol methods, including nonresponder information, are described elsewhere.31
Questions about yoga were asked at the 12 month postdiagnosis interview. Participants were read the following: “Here is a list of services some patients use to recover from cancer. Please tell me if you have used any of these.” The list included yoga, physical therapy, occupational therapy, exercise, meditation, or massage therapy. Next participants were provided education about yoga via the following description: “Yoga is a practice of stress reduction and exercise with stretching, holding positions and deep breathing. For some, it may improve your sleep, energy, flexibility, anxiety, and pain. The postures are done standing, sitting, or lying down. If needed, it can be done all from a chair.” We then asked whether they would attend if yoga was offered at the VHA hospital (yes, no, maybe). Participants provided brief responses to 2 open-ended questions: (“If I came to a yoga class, I …”; and “Is there anything that might make you more likely to come to a yoga class?”) Responses were transcribed verbatim and entered into a database for qualitative analysis. Subsequently, participants completed standardized measures of health-related quality of life and beliefs about yoga as described below.
Study 2 participants were identified from VHA tumor registries and a cancer support group. Eligible patients had a diagnosis of cancer (any type except basil cell carcinoma) within the previous 3 years and were excluded if they were in hospice care, had dementia, or had a psychotic spectrum disorder. Participants completed face-to-face semistructured interviews with a trained interviewer before and after participation in an 8-week yoga group that met twice per week. Complete protocol methods are described elsewhere.16 This paper focuses on 28 of the 37 enrolled patients for whom we have complete pre- and postclass interview data. We previously reported on adaptations made to yoga in our pilot group of 14 individuals, who in this small sample did not show statistically significant changes in their quality of life from before to after the class.16 This analysis includes those 14 individuals and 14 who participated in additional classes, focusing on beliefs, which were not previously reported.
Measures
Participants reported their age, gender, ethnicity (Hispanic/Latino or not), race, and level of education. Information about the cancer diagnosis, American Joint Committee on Cancer (AJCC) cancer stage, and treatments was obtained from the medical record. The Physical Function and Anxiety Subscales from the Patient-Reported Outcomes Measurement Information System were used to measure health-related quality of life (HRQoL).32-34 Items are rated on a Likert scale from 1 (not at all) to 5 (very much).
The Beliefs About Yoga Scale (BAYS) was used to measure beliefs about the outcomes of engaging in yoga.28 The 11-item scale has 3 factors: expected health benefits (5 items), expected discomfort (3 items), and expected social norms (3 items). Items from the expected discomfort and expected social norms are reverse scored so that a higher score indicates more positive beliefs. To reduce participant burden, in study 1 we selected 1 item from each factor with high factor loadings in the original cross-validation sample.28 It would improve my overall health (Benefit, factor loading = .89); I would have to be more flexible to take a class (Discomfort, factor loading = .67); I would be embarrassed in a class (Social norms, factor loading = .75). Participants in study 2 completed the entire 11-item scale. Items were summed to create subscales and total scales.
Analysis
Descriptive statistics were used in study 1 to characterize participants’ yoga experience and interest. Changes in interest pre- and posteducation were evaluated with χ2 comparison of distribution. The association of beliefs about yoga with 3 levels of interest (yes, no, maybe) was evaluated through analysis of variance (ANOVA) comparing the mean score on the summed BAYS items among the 3 groups. The association of demographic (age, education, race) and clinical factors (AJCC stage, physical function) with BAYS was determined through multivariate linear regression.
For analytic purposes, due to small subgroup sample sizes we compared those who identified as non-Hispanic White adults to those who identified as African American/Hispanic/other persons. To further evaluate the relationship of age to yoga beliefs, we examined beliefs about yoga in 3 age groups (40-59 years [n = 24]; 60-69 years [n = 58]; 70-89 years [n = 28]) using ANOVA comparing the mean score on the summed BAYS items among the 3 groups. In study 2, changes in interest before and after the yoga program were evaluated with paired t tests and repeated ANOVA, with beliefs about yoga prior to class as a covariate. The association of demographic and clinical factors with BAYS was determined as in the first sample through multivariate linear regression, except the variable of race was not included due to small sample size (ie, only 3 individuals identified as persons of color).
Thematic analysis in which content-related codes were developed and subsequently grouped together was applied to the data of 110 participants who responded to the open-ended survey questions in study 1 to further illuminate responses to closed-ended questions.35 Transcribed responses to the open-ended questions were transferred to a spreadsheet. An initial code book with code names, definitions, and examples was developed based on an inductive method by one team member (EA).35 Initially, coding and tabulation were conducted separately for each question but it was noted that content extended across response prompts (eg, responses to question 2 “What might make you more likely to come?” were spontaneously provided when answering question 1), thus coding was collapsed across questions. Next, 2 team members (EA, KD) coded the same responses, meeting weekly to discuss discrepancies. The code book was revised following each meeting to reflect refinements in code names and definitions, adding newly generated codes as needed. The process continued until consensus and data saturation was obtained, with 90% intercoder agreement. Next, these codes were subjected to thematic analysis by 2 team members (EA, KD) combining codes into 6 overarching themes. The entire team reviewed the codes and identified 2 supra themes: positive beliefs or facilitators and negative beliefs or barriers.
Consistent with the concept of reflexivity in qualitative research, we acknowledge the influence of the research team members on the qualitative process.36 The primary coding team (EA, KD) are both researchers and employees of Veterans Affairs Boston Healthcare System who have participated in other research projects involving veterans and qualitative analyses but are not yoga instructors or yoga researchers.
Results
Study 1
The sample of 110 military veterans was mostly male (99.1%) with a mean (SD) age of 64.9 (9.4) years (range, 41-88)(Table 1). The majority (70.9%) described their race/ethnicity as White, non-Hispanic followed by Black/African American (18.2%) and Hispanic (8.2%) persons; 50.0% had no more than a high school education. The most common cancer diagnoses were colorectal (50.9%), head and neck (39.1%), and esophageal and gastric (10.0%) and ranged from AJCC stages I to IV.
When first asked, the majority of participants (78.2%) reported that they were not interested in yoga, 16.4% reported they might be interested, and 5.5% reported they had tried a yoga class since their cancer diagnosis. In contrast, 40.9% used exercise, 32.7% used meditation, 14.5% used physical or occupational therapy, and 11.8% used massage therapy since their cancer diagnosis.
After participants were provided the brief scripted education about yoga, the level of interest shifted: 46.4% not interested, 21.8% interested, and 31.8% definitely interested, demonstrating a statistically significant shift in interest following education (χ2 = 22.25, P < .001) (Figure 1). Those with the most positive beliefs about yoga were most likely to indicate interest. Using the BAYS 3-item survey, the mean (SD) for the definitely interested, might be interested, and not interested groups was 15.1 (3.2), 14.1 (3.2), and 12.3 (2.5), respectively (F = 10.63, P < .001).
A multivariable regression was run to examine possible associations between participants’ demographic characteristics, clinical characteristics, and beliefs about yoga as measured by the 3 BAYS items (Table 2). Higher expected health benefits of yoga was associated with identifying as
Six themes were identified in qualitative analysis of semistructured interviews reflecting older veterans’ beliefs about yoga, which were grouped into the following suprathemes of positive vs negative beliefs (Figure 2). Exemplar responses appear in Table 3.
Study 2 Intervention Sample
This sample of 28 veterans was mostly male (96.4%) with a mean (SD) age of 69.2 (10.9) years (range, 57-87). The majority (89.3%) described their race as White, followed by Black/African American (10.7%); no participants self-identified in other categories for race/ethnicity. Twelve veterans (42.9%) had no more than a high school education. The most common cancer diagnosis was genitourinary (35.7%) and the AJCC stage ranged from I to IV.
We employed information learned in study 1 to enhance access in study 2. We mailed letters to 278 veterans diagnosed with cancer in the previous 3 years that provided education about yoga based on study 1 findings. Of 207 veterans reached by phone, 133 (64%) stated they were not interested in coming to a yoga class; 74 (36%) were interested, but 30 felt they were unable to attend due to obstacles such as illness or travel. Ultimately 37 (18%) veterans agreed and consented to the class, and 28 (14%) completed postclass surveys.
In multivariate regression, higher expected health benefits of yoga were associated with higher physical function, lower concern about expected discomfort was also associated with higher physical function as well as higher education; similarly, lower concern about expected social norms was associated with higher physical function. Age was not associated with any of the BAYS factors.
Beliefs about yoga improved from before to after class for all 3 domains with greater expected benefit and lower concerns about discomfort or social norms:
Discussion
Yoga is an effective clinical intervention for addressing some long-term adverse effects in cancer survivors, although the body of research focuses predominantly on middle aged, female, White, college-educated breast cancer survivors. There is no evidence to suggest yoga would be less effective in other groups, but it has not been extensively studied in survivors from diverse subgroups. Beliefs about yoga are a factor that may enhance interest in yoga interventions and research, and measures aimed at addressing potential beliefs and fears may capture information that can be used to support older cancer survivors in holistic health. The aims of this study were to examine beliefs about yoga in 2 samples of older cancer survivors who received VHA care. The main findings are (1) interest in yoga was initially low and lower than that of other complementary or exercise-based interventions, but increased when participants were provided brief education about yoga; (2) interest in yoga was associated with beliefs about yoga with qualitative comments illuminating these beliefs; (3) demographic characteristics (education, race) and physical function were associated with beliefs about yoga; and (4) positive beliefs about yoga increased following a brief yoga intervention and was associated with improvements in physical function.
Willingness to consider a class appeared to shift for some older veterans when they were presented brief information about yoga that explained what is involved, how it might help, and that it could be done from a chair if needed. These findings clearly indicated that when trying to enhance participation in yoga in clinical or research programs, it will be important that recruitment materials provide such information. This finding is consistent with the qualitative findings that reflected a lack of knowledge or skepticism about benefits of yoga among some participants. Given the finding that physical function was associated with beliefs about yoga and was also a prominent theme in qualitative analyses,
Age was not associated with beliefs about yoga in either study. Importantly, in a more detailed study 1 follow-up analysis, beliefs about yoga were equivalent for aged > 70 years compared with those aged 40 to 69 years. It is not entirely clear why older adults have been underrepresented in studies of yoga in cancer survivors. However, older adults are vastly underrepresented in clinical trials for many health conditions, even though they are more likely to experience many diseases, including cancer.37 A new National Institutes of Health policy requires that individuals of all ages, including older adults, must be included in all human subjects research unless there are scientific reasons not to include them.38 It is therefore imperative to consider strategies to address underrepresentation of older adults.
Qualitative findings here suggest it will be important to consider logistical barriers including transportation and affordability as well as adaptations requested by older adults (eg, preferences for older teachers).18
Although our sample was small, we also found that adults from diverse racial and ethnic backgrounds had more positive beliefs about yoga, such that this finding should be interpreted with caution. Similar to older adults, individuals from diverse racial and ethnic groups are also underrepresented in clinical trials and may have lower access to complementary treatments. Cultural and linguistic adaptations and building community partnerships should be considered in both recruitment and intervention delivery strategies.40We learned that education about yoga may increase interest and that it is possible to recruit older veterans to yoga class. Nevertheless, in study 2, our rate of full participation was low, with only about 1 in 10 participating. Additional efforts to enhance beliefs about yoga and to addresslogistical barriers (offering telehealth yoga) are needed to best reach older veterans.
Limitations
These findings have several limitations. First, participants were homogeneous in age, gender, race/ethnicity and veteran status, which provides a window into this understudied population but limits generalizability and our ability to control across populations. Second, the sample size limited the ability to conduct subgroup and interaction analyses, such as examining potential differential effects of cancer type, treatment, and PTSD on yoga beliefs or to consider the relationship of yoga beliefs with changes in quality of life before and after the yoga intervention in study 2. Additionally, age was not associated with beliefs about yoga in these samples that of mostly older adults. We were able to compare middle-aged and older adults but could not compare beliefs about yoga to adults aged in their 20s and 30s. Last, our study excluded people with dementia and psychotic disorders. Further research is needed to examine yoga for older cancer survivors who have these conditions.
Conclusions
Education that specifically informs potential participants about yoga practice, potential modifications, and potential benefits, as well as adaptations to programs that address physical and logistical barriers may be useful in increasing access to and participation in yoga for older Veterans who are cancer survivors.
Acknowledgments/Funding
The authors have no financial or personal relationships to disclose. This work was supported by the US Department of Veterans Affairs (VA) Rehabilitation Research and Development Service. This material is the result of work supported with resources and the use of facilities at the VA Boston Healthcare System, Bedford VA Medical Center, and Michael E. DeBakey VA Medical Center in Houston, Texas. We thank the members of the Veterans Cancer Rehabilitation Study (Vetcares) Research teams in Boston and in Houston and the veterans who have participated in our research studies and allow us to contribute to their health care.
Yoga is an effective clinical intervention for cancer survivors. Studies indicate a wide range of benefits, including improvements in physical functioning, emotional well-being and overall quality of life.1-7 Two-thirds of National Cancer Institute designated comprehensive cancer centers offer yoga on-site.8 Yoga is endorsed by the National Comprehensive Cancer Network and American Society of Clinical Oncology for managing symptoms, such as cancer-related anxiety and depression and for improving overall quality of life.9,10
Although the positive effects of yoga on cancer patients are well studied, most published research in this area reports on predominantly middle-aged women with breast cancer.11,12 Less is known about the use of yoga in other groups of cancer patients, such as older adults, veterans, and those from diverse racial or ethnic backgrounds. This gap in the literature is concerning considering that the majority of cancer survivors are aged 60 years or older, and veterans face unique risk factors for cancer associated with herbicide exposure (eg, Agent Orange) and other military-related noxious exposures.13,14 Older cancer survivors may have more difficulty recovering from treatment-related adverse effects, making it especially important to target recovery efforts to older adults.15 Yoga can be adapted for older cancer survivors with age-related comorbidities, similar to adaptations made for older adults who are not cancer survivors but require accommodations for physical limitations.16-20 Similarly, yoga programs targeted to racially diverse cancer survivors are associated with improved mood and well-being in racially diverse cancer survivors, but studies suggest community engagement and cultural adaptation may be important to address the needs of culturally diverse cancer survivors.21-23
Yoga has been increasingly studied within the Veterans Health Administration (VHA) for treatment of posttraumatic stress disorder (PTSD) and has been found effective in reducing symptoms through the use of trauma-informed and military-relevant instruction as well as a military veteran yoga teacher.24-26 This work has not targeted older veterans or cancer survivors who may be more difficult to recruit into such programs, but who would nevertheless benefit.
Clinically, the VHA whole health model is providing increased opportunities for veterans to engage in holistic care including yoga.27 Resources include in-person yoga classes (varies by facility), videos, and handouts with practices uniquely designed for veterans or wounded warriors. As clinicians increasingly refer veterans to these programs, it will be important to develop strategies to engage older veterans in these services.
One important strategy to enhancing access to yoga for older veterans is to consider beliefs about yoga. Beliefs about yoga or general expectations about the outcomes of yoga may be critical to consider in expanding access to yoga in underrepresented groups. Beliefs about yoga may include beliefs about yoga improving health, yoga being difficult or producing discomfort, and yoga involving specific social norms.28 For example, confidence in one’s ability to perform yoga despite discomfort predicted class attendance and practice in a sample of 32 breast cancer survivors.29 Relatedly, positive beliefs about the impact of yoga on health were associated with improvements in mood and quality of life in a sample of 66 cancer survivors.30
The aim of this study was to examine avenues to enhance access to yoga for older veterans, including those from diverse backgrounds, with a focus on the role of beliefs. In the first study we investigate the association between beliefs about and barriers to yoga in a group of older cancer survivors, and we consider the role of demographic and clinical variables in such beliefs and how education may alter beliefs. In alignment with the whole health model of holistic health, we posit that yoga educational materials and resources may contribute to yoga beliefs and work to decrease these barriers. We apply these findings in a second study that enrolled older veterans in yoga and examining the impact of program participation on beliefs and the role of beliefs in program outcomes. In the discussion we return to consider how to increase access to yoga to older veterans based on these findings.
Methods
Study 1 participants were identified from VHA tumor registries. Eligible patients had head and neck, esophageal, gastric, or colorectal cancers and were excluded if they were in hospice care, had dementia, or had a psychotic spectrum disorder. Participants completed a face-to-face semistructured interview at 6, 12, and 18 months after their cancer diagnosis with a trained interviewer. Complete protocol methods, including nonresponder information, are described elsewhere.31
Questions about yoga were asked at the 12 month postdiagnosis interview. Participants were read the following: “Here is a list of services some patients use to recover from cancer. Please tell me if you have used any of these.” The list included yoga, physical therapy, occupational therapy, exercise, meditation, or massage therapy. Next participants were provided education about yoga via the following description: “Yoga is a practice of stress reduction and exercise with stretching, holding positions and deep breathing. For some, it may improve your sleep, energy, flexibility, anxiety, and pain. The postures are done standing, sitting, or lying down. If needed, it can be done all from a chair.” We then asked whether they would attend if yoga was offered at the VHA hospital (yes, no, maybe). Participants provided brief responses to 2 open-ended questions: (“If I came to a yoga class, I …”; and “Is there anything that might make you more likely to come to a yoga class?”) Responses were transcribed verbatim and entered into a database for qualitative analysis. Subsequently, participants completed standardized measures of health-related quality of life and beliefs about yoga as described below.
Study 2 participants were identified from VHA tumor registries and a cancer support group. Eligible patients had a diagnosis of cancer (any type except basil cell carcinoma) within the previous 3 years and were excluded if they were in hospice care, had dementia, or had a psychotic spectrum disorder. Participants completed face-to-face semistructured interviews with a trained interviewer before and after participation in an 8-week yoga group that met twice per week. Complete protocol methods are described elsewhere.16 This paper focuses on 28 of the 37 enrolled patients for whom we have complete pre- and postclass interview data. We previously reported on adaptations made to yoga in our pilot group of 14 individuals, who in this small sample did not show statistically significant changes in their quality of life from before to after the class.16 This analysis includes those 14 individuals and 14 who participated in additional classes, focusing on beliefs, which were not previously reported.
Measures
Participants reported their age, gender, ethnicity (Hispanic/Latino or not), race, and level of education. Information about the cancer diagnosis, American Joint Committee on Cancer (AJCC) cancer stage, and treatments was obtained from the medical record. The Physical Function and Anxiety Subscales from the Patient-Reported Outcomes Measurement Information System were used to measure health-related quality of life (HRQoL).32-34 Items are rated on a Likert scale from 1 (not at all) to 5 (very much).
The Beliefs About Yoga Scale (BAYS) was used to measure beliefs about the outcomes of engaging in yoga.28 The 11-item scale has 3 factors: expected health benefits (5 items), expected discomfort (3 items), and expected social norms (3 items). Items from the expected discomfort and expected social norms are reverse scored so that a higher score indicates more positive beliefs. To reduce participant burden, in study 1 we selected 1 item from each factor with high factor loadings in the original cross-validation sample.28 It would improve my overall health (Benefit, factor loading = .89); I would have to be more flexible to take a class (Discomfort, factor loading = .67); I would be embarrassed in a class (Social norms, factor loading = .75). Participants in study 2 completed the entire 11-item scale. Items were summed to create subscales and total scales.
Analysis
Descriptive statistics were used in study 1 to characterize participants’ yoga experience and interest. Changes in interest pre- and posteducation were evaluated with χ2 comparison of distribution. The association of beliefs about yoga with 3 levels of interest (yes, no, maybe) was evaluated through analysis of variance (ANOVA) comparing the mean score on the summed BAYS items among the 3 groups. The association of demographic (age, education, race) and clinical factors (AJCC stage, physical function) with BAYS was determined through multivariate linear regression.
For analytic purposes, due to small subgroup sample sizes we compared those who identified as non-Hispanic White adults to those who identified as African American/Hispanic/other persons. To further evaluate the relationship of age to yoga beliefs, we examined beliefs about yoga in 3 age groups (40-59 years [n = 24]; 60-69 years [n = 58]; 70-89 years [n = 28]) using ANOVA comparing the mean score on the summed BAYS items among the 3 groups. In study 2, changes in interest before and after the yoga program were evaluated with paired t tests and repeated ANOVA, with beliefs about yoga prior to class as a covariate. The association of demographic and clinical factors with BAYS was determined as in the first sample through multivariate linear regression, except the variable of race was not included due to small sample size (ie, only 3 individuals identified as persons of color).
Thematic analysis in which content-related codes were developed and subsequently grouped together was applied to the data of 110 participants who responded to the open-ended survey questions in study 1 to further illuminate responses to closed-ended questions.35 Transcribed responses to the open-ended questions were transferred to a spreadsheet. An initial code book with code names, definitions, and examples was developed based on an inductive method by one team member (EA).35 Initially, coding and tabulation were conducted separately for each question but it was noted that content extended across response prompts (eg, responses to question 2 “What might make you more likely to come?” were spontaneously provided when answering question 1), thus coding was collapsed across questions. Next, 2 team members (EA, KD) coded the same responses, meeting weekly to discuss discrepancies. The code book was revised following each meeting to reflect refinements in code names and definitions, adding newly generated codes as needed. The process continued until consensus and data saturation was obtained, with 90% intercoder agreement. Next, these codes were subjected to thematic analysis by 2 team members (EA, KD) combining codes into 6 overarching themes. The entire team reviewed the codes and identified 2 supra themes: positive beliefs or facilitators and negative beliefs or barriers.
Consistent with the concept of reflexivity in qualitative research, we acknowledge the influence of the research team members on the qualitative process.36 The primary coding team (EA, KD) are both researchers and employees of Veterans Affairs Boston Healthcare System who have participated in other research projects involving veterans and qualitative analyses but are not yoga instructors or yoga researchers.
Results
Study 1
The sample of 110 military veterans was mostly male (99.1%) with a mean (SD) age of 64.9 (9.4) years (range, 41-88)(Table 1). The majority (70.9%) described their race/ethnicity as White, non-Hispanic followed by Black/African American (18.2%) and Hispanic (8.2%) persons; 50.0% had no more than a high school education. The most common cancer diagnoses were colorectal (50.9%), head and neck (39.1%), and esophageal and gastric (10.0%) and ranged from AJCC stages I to IV.
When first asked, the majority of participants (78.2%) reported that they were not interested in yoga, 16.4% reported they might be interested, and 5.5% reported they had tried a yoga class since their cancer diagnosis. In contrast, 40.9% used exercise, 32.7% used meditation, 14.5% used physical or occupational therapy, and 11.8% used massage therapy since their cancer diagnosis.
After participants were provided the brief scripted education about yoga, the level of interest shifted: 46.4% not interested, 21.8% interested, and 31.8% definitely interested, demonstrating a statistically significant shift in interest following education (χ2 = 22.25, P < .001) (Figure 1). Those with the most positive beliefs about yoga were most likely to indicate interest. Using the BAYS 3-item survey, the mean (SD) for the definitely interested, might be interested, and not interested groups was 15.1 (3.2), 14.1 (3.2), and 12.3 (2.5), respectively (F = 10.63, P < .001).
A multivariable regression was run to examine possible associations between participants’ demographic characteristics, clinical characteristics, and beliefs about yoga as measured by the 3 BAYS items (Table 2). Higher expected health benefits of yoga was associated with identifying as
Six themes were identified in qualitative analysis of semistructured interviews reflecting older veterans’ beliefs about yoga, which were grouped into the following suprathemes of positive vs negative beliefs (Figure 2). Exemplar responses appear in Table 3.
Study 2 Intervention Sample
This sample of 28 veterans was mostly male (96.4%) with a mean (SD) age of 69.2 (10.9) years (range, 57-87). The majority (89.3%) described their race as White, followed by Black/African American (10.7%); no participants self-identified in other categories for race/ethnicity. Twelve veterans (42.9%) had no more than a high school education. The most common cancer diagnosis was genitourinary (35.7%) and the AJCC stage ranged from I to IV.
We employed information learned in study 1 to enhance access in study 2. We mailed letters to 278 veterans diagnosed with cancer in the previous 3 years that provided education about yoga based on study 1 findings. Of 207 veterans reached by phone, 133 (64%) stated they were not interested in coming to a yoga class; 74 (36%) were interested, but 30 felt they were unable to attend due to obstacles such as illness or travel. Ultimately 37 (18%) veterans agreed and consented to the class, and 28 (14%) completed postclass surveys.
In multivariate regression, higher expected health benefits of yoga were associated with higher physical function, lower concern about expected discomfort was also associated with higher physical function as well as higher education; similarly, lower concern about expected social norms was associated with higher physical function. Age was not associated with any of the BAYS factors.
Beliefs about yoga improved from before to after class for all 3 domains with greater expected benefit and lower concerns about discomfort or social norms:
Discussion
Yoga is an effective clinical intervention for addressing some long-term adverse effects in cancer survivors, although the body of research focuses predominantly on middle aged, female, White, college-educated breast cancer survivors. There is no evidence to suggest yoga would be less effective in other groups, but it has not been extensively studied in survivors from diverse subgroups. Beliefs about yoga are a factor that may enhance interest in yoga interventions and research, and measures aimed at addressing potential beliefs and fears may capture information that can be used to support older cancer survivors in holistic health. The aims of this study were to examine beliefs about yoga in 2 samples of older cancer survivors who received VHA care. The main findings are (1) interest in yoga was initially low and lower than that of other complementary or exercise-based interventions, but increased when participants were provided brief education about yoga; (2) interest in yoga was associated with beliefs about yoga with qualitative comments illuminating these beliefs; (3) demographic characteristics (education, race) and physical function were associated with beliefs about yoga; and (4) positive beliefs about yoga increased following a brief yoga intervention and was associated with improvements in physical function.
Willingness to consider a class appeared to shift for some older veterans when they were presented brief information about yoga that explained what is involved, how it might help, and that it could be done from a chair if needed. These findings clearly indicated that when trying to enhance participation in yoga in clinical or research programs, it will be important that recruitment materials provide such information. This finding is consistent with the qualitative findings that reflected a lack of knowledge or skepticism about benefits of yoga among some participants. Given the finding that physical function was associated with beliefs about yoga and was also a prominent theme in qualitative analyses,
Age was not associated with beliefs about yoga in either study. Importantly, in a more detailed study 1 follow-up analysis, beliefs about yoga were equivalent for aged > 70 years compared with those aged 40 to 69 years. It is not entirely clear why older adults have been underrepresented in studies of yoga in cancer survivors. However, older adults are vastly underrepresented in clinical trials for many health conditions, even though they are more likely to experience many diseases, including cancer.37 A new National Institutes of Health policy requires that individuals of all ages, including older adults, must be included in all human subjects research unless there are scientific reasons not to include them.38 It is therefore imperative to consider strategies to address underrepresentation of older adults.
Qualitative findings here suggest it will be important to consider logistical barriers including transportation and affordability as well as adaptations requested by older adults (eg, preferences for older teachers).18
Although our sample was small, we also found that adults from diverse racial and ethnic backgrounds had more positive beliefs about yoga, such that this finding should be interpreted with caution. Similar to older adults, individuals from diverse racial and ethnic groups are also underrepresented in clinical trials and may have lower access to complementary treatments. Cultural and linguistic adaptations and building community partnerships should be considered in both recruitment and intervention delivery strategies.40We learned that education about yoga may increase interest and that it is possible to recruit older veterans to yoga class. Nevertheless, in study 2, our rate of full participation was low, with only about 1 in 10 participating. Additional efforts to enhance beliefs about yoga and to addresslogistical barriers (offering telehealth yoga) are needed to best reach older veterans.
Limitations
These findings have several limitations. First, participants were homogeneous in age, gender, race/ethnicity and veteran status, which provides a window into this understudied population but limits generalizability and our ability to control across populations. Second, the sample size limited the ability to conduct subgroup and interaction analyses, such as examining potential differential effects of cancer type, treatment, and PTSD on yoga beliefs or to consider the relationship of yoga beliefs with changes in quality of life before and after the yoga intervention in study 2. Additionally, age was not associated with beliefs about yoga in these samples that of mostly older adults. We were able to compare middle-aged and older adults but could not compare beliefs about yoga to adults aged in their 20s and 30s. Last, our study excluded people with dementia and psychotic disorders. Further research is needed to examine yoga for older cancer survivors who have these conditions.
Conclusions
Education that specifically informs potential participants about yoga practice, potential modifications, and potential benefits, as well as adaptations to programs that address physical and logistical barriers may be useful in increasing access to and participation in yoga for older Veterans who are cancer survivors.
Acknowledgments/Funding
The authors have no financial or personal relationships to disclose. This work was supported by the US Department of Veterans Affairs (VA) Rehabilitation Research and Development Service. This material is the result of work supported with resources and the use of facilities at the VA Boston Healthcare System, Bedford VA Medical Center, and Michael E. DeBakey VA Medical Center in Houston, Texas. We thank the members of the Veterans Cancer Rehabilitation Study (Vetcares) Research teams in Boston and in Houston and the veterans who have participated in our research studies and allow us to contribute to their health care.
1. Mustian KM, Sprod LK, Janelsins M, et al. Multicenter, randomized controlled trial of yoga for sleep quality among cancer survivors. J Clin Oncol. 2013;31(26):3233-3241. doi:10.1200/JCO.2012.43.7707
2. Chandwani KD, Thornton B, Perkins GH, et al. Yoga improves quality of life and benefit finding in women undergoing radiotherapy for breast cancer. J Soc Integr Oncol. 2010;8(2):43-55.
3. Erratum: Primary follicular lymphoma of disguised as multiple miliary like lesions: A case report and review of literature. Indian J Pathol Microbiol. 2018;61(4):643. doi:10.4103/0377-4929.243009
4. Eyigor S, Uslu R, Apaydın S, Caramat I, Yesil H. Can yoga have any effect on shoulder and arm pain and quality of life in patients with breast cancer? A randomized, controlled, single-blind trial. Complement Ther Clin Pract. 2018;32:40-45. doi:10.1016/j.ctcp.2018.04.010
5. Loudon A, Barnett T, Piller N, Immink MA, Williams AD. Yoga management of breast cancer-related lymphoedema: a randomised controlled pilot-trial. BMC Complement Altern Med. 2014;14:214. Published 2014 Jul 1. doi:10.1186/1472-6882-14-214
6. Browning KK, Kue J, Lyons F, Overcash J. Feasibility of mind-body movement programs for cancer survivors. Oncol Nurs Forum. 2017;44(4):446-456. doi:10.1188/17.ONF.446-456
7. Rosenbaum MS, Velde J. The effects of yoga, massage, and reiki on patient well-being at a cancer resource center. Clin J Oncol Nurs. 2016;20(3):E77-E81. doi:10.1188/16.CJON.E77-E81
8. Yun H, Sun L, Mao JJ. Growth of integrative medicine at leading cancer centers between 2009 and 2016: a systematic analysis of NCI-designated comprehensive cancer center websites. J Natl Cancer Inst Monogr. 2017;2017(52):lgx004. doi:10.1093/jncimonographs/lgx004
9. Sanft T, Denlinger CS, Armenian S, et al. NCCN guidelines insights: survivorship, version 2.2019. J Natl Compr Canc Netw. 2019;17(7):784-794. doi:10.6004/jnccn.2019.0034
10. Lyman GH, Greenlee H, Bohlke K, et al. Integrative therapies during and after breast cancer treatment: ASCO endorsement of the SIO clinical practice guideline. J Clin Oncol. 2018;36(25):2647-2655. doi:10.1200/JCO.2018.79.2721
11. Culos-Reed SN, Mackenzie MJ, Sohl SJ, Jesse MT, Zahavich AN, Danhauer SC. Yoga & cancer interventions: a review of the clinical significance of patient reported outcomes for cancer survivors. Evid Based Complement Alternat Med. 2012;2012:642576. doi:10.1155/2012/642576
12. Danhauer SC, Addington EL, Cohen L, et al. Yoga for symptom management in oncology: a review of the evidence base and future directions for research. Cancer. 2019;125(12):1979-1989. doi:10.1002/cncr.31979
13. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2019. CA Cancer J Clin. 2019;69(1):7-34. doi:10.3322/caac.21551
14. US Department of Veterans Affairs. Veterans’ diseases associated with Agent Orange. Updated June 16, 2021. Accessed September 22, 2021. https://www.publichealth.va.gov/exposures/agentorange/conditions
15. Deimling GT, Arendt JA, Kypriotakis G, Bowman KF. Functioning of older, long-term cancer survivors: the role of cancer and comorbidities. J Am Geriatr Soc. 2009;57(suppl 2):S289-S292. doi:10.1111/j.1532-5415.2009.02515.x
16. King K, Gosian J, Doherty K, et al. Implementing yoga therapy adapted for older veterans who are cancer survivors. Int J Yoga Therap. 2014;24:87-96.
17. Wertman A, Wister AV, Mitchell BA. On and off the mat: yoga experiences of middle-aged and older adults. Can J Aging. 2016;35(2):190-205. doi:10.1017/S0714980816000155
18. Chen KM, Wang HH, Li CH, Chen MH. Community vs. institutional elders’ evaluations of and preferences for yoga exercises. J Clin Nurs. 2011;20(7-8):1000-1007. doi:10.1111/j.1365-2702.2010.03337.x
19. Saravanakumar P, Higgins IJ, Van Der Riet PJ, Sibbritt D. Tai chi and yoga in residential aged care: perspectives of participants: A qualitative study. J Clin Nurs. 2018;27(23-24):4390-4399. doi:10.1111/jocn.14590
20. Fan JT, Chen KM. Using silver yoga exercises to promote physical and mental health of elders with dementia in long-term care facilities. Int Psychogeriatr. 2011;23(8):1222-1230. doi:10.1017/S1041610211000287
21. Taylor TR, Barrow J, Makambi K, et al. A restorative yoga intervention for African-American breast cancer survivors: a pilot study. J Racial Ethn Health Disparities. 2018;5(1):62-72. doi:10.1007/s40615-017-0342-4
22. Moadel AB, Shah C, Wylie-Rosett J, et al. Randomized controlled trial of yoga among a multiethnic sample of breast cancer patients: effects on quality of life. J Clin Oncol. 2007;25(28):4387-4395. doi:10.1200/JCO.2006.06.6027
23. Smith SA, Whitehead MS, Sheats JQ, Chubb B, Alema-Mensah E, Ansa BE. Community engagement to address socio-ecological barriers to physical activity among African American breast cancer survivors. J Ga Public Health Assoc. 2017;6(3):393-397. doi:10.21633/jgpha.6.312
24. Cushing RE, Braun KL, Alden C-Iayt SW, Katz AR. Military-Tailored Yoga for Veterans with Post-traumatic Stress Disorder. Mil Med. 2018;183(5-6):e223-e231. doi:10.1093/milmed/usx071
25. Davis LW, Schmid AA, Daggy JK, et al. Symptoms improve after a yoga program designed for PTSD in a randomized controlled trial with veterans and civilians. Psychol Trauma. 2020;12(8):904-912. doi:10.1037/tra0000564
26. Chopin SM, Sheerin CM, Meyer BL. Yoga for warriors: An intervention for veterans with comorbid chronic pain and PTSD. Psychol Trauma. 2020;12(8):888-896. doi:10.1037/tra0000649
27. US Department of Veterans Affairs. Whole health. Updated September 13, 2021. Accessed September 22, 2021. https://www.va.gov/wholehealth
28. Sohl SJ, Schnur JB, Daly L, Suslov K, Montgomery GH. Development of the beliefs about yoga scale. Int J Yoga Therap. 2011;(21):85-91.
29. Cadmus-Bertram L, Littman AJ, Ulrich CM, et al. Predictors of adherence to a 26-week viniyoga intervention among post-treatment breast cancer survivors. J Altern Complement Med. 2013;19(9):751-758. doi:10.1089/acm.2012.0118
30. Mackenzie MJ, Carlson LE, Ekkekakis P, Paskevich DM, Culos-Reed SN. Affect and mindfulness as predictors of change in mood disturbance, stress symptoms, and quality of life in a community-based yoga program for cancer survivors. Evid Based Complement Alternat Med. 2013;2013:419496. doi:10.1155/2013/419496
31. Naik AD, Martin LA, Karel M, et al. Cancer survivor rehabilitation and recovery: protocol for the Veterans Cancer Rehabilitation Study (Vet-CaRes). BMC Health Serv Res. 2013;13:93. Published 2013 Mar 11. doi:10.1186/1472-6963-13-93
32. Northwestern University. PROMIS Health Organization and the PROMIS Cooperative Group. PROMIS Short Form v2.0 - Physical Function 6b. Accessed September 24, 2021. https://www.healthmeasures.net/index.php?option=com_instruments&view=measure&id=793&Itemid=992
33. Northwestern University. PROMIS Health Organization and the PROMIS Cooperative Group. PROMIS Short Form v1.0 - Anxiety 6a. Accessed September 24, 2021. https://www.healthmeasures.net/index.php?option=com_instruments&view=measure&id=145&Itemid=992
34. Northwestern University. PROMIS Health Organization and the PROMIS Cooperative Group. PROMIS-43 Profile v2.1. Accessed September 24, 2021. https://www.healthmeasures.net/index.php?option=com_instruments&view=measure&id=858&Itemid=992
35. Todd NJ, Jones SH, Lobban FA. “Recovery” in bipolar disorder: how can service users be supported through a self-management intervention? A qualitative focus group study. J Ment Health. 2012;21(2):114-126. doi:10.3109/09638237.2011.621471
36. Finlay L. “Outing” the researcher: the provenance, process, and practice of reflexivity. Qual Health Res. 2002;12(4):531-545. doi:10.1177/104973202129120052
37. Herrera AP, Snipes SA, King DW, Torres-Vigil I, Goldberg DS, Weinberg AD. Disparate inclusion of older adults in clinical trials: priorities and opportunities for policy and practice change. Am J Public Health. 2010;10(suppl 1):S105-S112. doi:10.2105/AJPH.2009.162982
38. National Institutes of Health. Revision: NIH policy and guidelines on the inclusion of individuals across the lifespan as participants in research involving human subjects. Published December 19, 2017. Accessed September 22, 2021. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-18-116.html
39. Townsley CA, Selby R, Siu LL. Systematic review of barriers to the recruitment of older patients with cancer onto clinical trials. J Clin Oncol. 2005;23(13):3112-3124. doi:10.1200/JCO.2005.00.141
40. Vuong I, Wright J, Nolan MB, et al. Overcoming barriers: evidence-based strategies to increase enrollment of underrepresented populations in cancer therapeutic clinical trials-a narrative review. J Cancer Educ. 2020;35(5):841-849. doi:10.1007/s13187-019-01650-y
1. Mustian KM, Sprod LK, Janelsins M, et al. Multicenter, randomized controlled trial of yoga for sleep quality among cancer survivors. J Clin Oncol. 2013;31(26):3233-3241. doi:10.1200/JCO.2012.43.7707
2. Chandwani KD, Thornton B, Perkins GH, et al. Yoga improves quality of life and benefit finding in women undergoing radiotherapy for breast cancer. J Soc Integr Oncol. 2010;8(2):43-55.
3. Erratum: Primary follicular lymphoma of disguised as multiple miliary like lesions: A case report and review of literature. Indian J Pathol Microbiol. 2018;61(4):643. doi:10.4103/0377-4929.243009
4. Eyigor S, Uslu R, Apaydın S, Caramat I, Yesil H. Can yoga have any effect on shoulder and arm pain and quality of life in patients with breast cancer? A randomized, controlled, single-blind trial. Complement Ther Clin Pract. 2018;32:40-45. doi:10.1016/j.ctcp.2018.04.010
5. Loudon A, Barnett T, Piller N, Immink MA, Williams AD. Yoga management of breast cancer-related lymphoedema: a randomised controlled pilot-trial. BMC Complement Altern Med. 2014;14:214. Published 2014 Jul 1. doi:10.1186/1472-6882-14-214
6. Browning KK, Kue J, Lyons F, Overcash J. Feasibility of mind-body movement programs for cancer survivors. Oncol Nurs Forum. 2017;44(4):446-456. doi:10.1188/17.ONF.446-456
7. Rosenbaum MS, Velde J. The effects of yoga, massage, and reiki on patient well-being at a cancer resource center. Clin J Oncol Nurs. 2016;20(3):E77-E81. doi:10.1188/16.CJON.E77-E81
8. Yun H, Sun L, Mao JJ. Growth of integrative medicine at leading cancer centers between 2009 and 2016: a systematic analysis of NCI-designated comprehensive cancer center websites. J Natl Cancer Inst Monogr. 2017;2017(52):lgx004. doi:10.1093/jncimonographs/lgx004
9. Sanft T, Denlinger CS, Armenian S, et al. NCCN guidelines insights: survivorship, version 2.2019. J Natl Compr Canc Netw. 2019;17(7):784-794. doi:10.6004/jnccn.2019.0034
10. Lyman GH, Greenlee H, Bohlke K, et al. Integrative therapies during and after breast cancer treatment: ASCO endorsement of the SIO clinical practice guideline. J Clin Oncol. 2018;36(25):2647-2655. doi:10.1200/JCO.2018.79.2721
11. Culos-Reed SN, Mackenzie MJ, Sohl SJ, Jesse MT, Zahavich AN, Danhauer SC. Yoga & cancer interventions: a review of the clinical significance of patient reported outcomes for cancer survivors. Evid Based Complement Alternat Med. 2012;2012:642576. doi:10.1155/2012/642576
12. Danhauer SC, Addington EL, Cohen L, et al. Yoga for symptom management in oncology: a review of the evidence base and future directions for research. Cancer. 2019;125(12):1979-1989. doi:10.1002/cncr.31979
13. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2019. CA Cancer J Clin. 2019;69(1):7-34. doi:10.3322/caac.21551
14. US Department of Veterans Affairs. Veterans’ diseases associated with Agent Orange. Updated June 16, 2021. Accessed September 22, 2021. https://www.publichealth.va.gov/exposures/agentorange/conditions
15. Deimling GT, Arendt JA, Kypriotakis G, Bowman KF. Functioning of older, long-term cancer survivors: the role of cancer and comorbidities. J Am Geriatr Soc. 2009;57(suppl 2):S289-S292. doi:10.1111/j.1532-5415.2009.02515.x
16. King K, Gosian J, Doherty K, et al. Implementing yoga therapy adapted for older veterans who are cancer survivors. Int J Yoga Therap. 2014;24:87-96.
17. Wertman A, Wister AV, Mitchell BA. On and off the mat: yoga experiences of middle-aged and older adults. Can J Aging. 2016;35(2):190-205. doi:10.1017/S0714980816000155
18. Chen KM, Wang HH, Li CH, Chen MH. Community vs. institutional elders’ evaluations of and preferences for yoga exercises. J Clin Nurs. 2011;20(7-8):1000-1007. doi:10.1111/j.1365-2702.2010.03337.x
19. Saravanakumar P, Higgins IJ, Van Der Riet PJ, Sibbritt D. Tai chi and yoga in residential aged care: perspectives of participants: A qualitative study. J Clin Nurs. 2018;27(23-24):4390-4399. doi:10.1111/jocn.14590
20. Fan JT, Chen KM. Using silver yoga exercises to promote physical and mental health of elders with dementia in long-term care facilities. Int Psychogeriatr. 2011;23(8):1222-1230. doi:10.1017/S1041610211000287
21. Taylor TR, Barrow J, Makambi K, et al. A restorative yoga intervention for African-American breast cancer survivors: a pilot study. J Racial Ethn Health Disparities. 2018;5(1):62-72. doi:10.1007/s40615-017-0342-4
22. Moadel AB, Shah C, Wylie-Rosett J, et al. Randomized controlled trial of yoga among a multiethnic sample of breast cancer patients: effects on quality of life. J Clin Oncol. 2007;25(28):4387-4395. doi:10.1200/JCO.2006.06.6027
23. Smith SA, Whitehead MS, Sheats JQ, Chubb B, Alema-Mensah E, Ansa BE. Community engagement to address socio-ecological barriers to physical activity among African American breast cancer survivors. J Ga Public Health Assoc. 2017;6(3):393-397. doi:10.21633/jgpha.6.312
24. Cushing RE, Braun KL, Alden C-Iayt SW, Katz AR. Military-Tailored Yoga for Veterans with Post-traumatic Stress Disorder. Mil Med. 2018;183(5-6):e223-e231. doi:10.1093/milmed/usx071
25. Davis LW, Schmid AA, Daggy JK, et al. Symptoms improve after a yoga program designed for PTSD in a randomized controlled trial with veterans and civilians. Psychol Trauma. 2020;12(8):904-912. doi:10.1037/tra0000564
26. Chopin SM, Sheerin CM, Meyer BL. Yoga for warriors: An intervention for veterans with comorbid chronic pain and PTSD. Psychol Trauma. 2020;12(8):888-896. doi:10.1037/tra0000649
27. US Department of Veterans Affairs. Whole health. Updated September 13, 2021. Accessed September 22, 2021. https://www.va.gov/wholehealth
28. Sohl SJ, Schnur JB, Daly L, Suslov K, Montgomery GH. Development of the beliefs about yoga scale. Int J Yoga Therap. 2011;(21):85-91.
29. Cadmus-Bertram L, Littman AJ, Ulrich CM, et al. Predictors of adherence to a 26-week viniyoga intervention among post-treatment breast cancer survivors. J Altern Complement Med. 2013;19(9):751-758. doi:10.1089/acm.2012.0118
30. Mackenzie MJ, Carlson LE, Ekkekakis P, Paskevich DM, Culos-Reed SN. Affect and mindfulness as predictors of change in mood disturbance, stress symptoms, and quality of life in a community-based yoga program for cancer survivors. Evid Based Complement Alternat Med. 2013;2013:419496. doi:10.1155/2013/419496
31. Naik AD, Martin LA, Karel M, et al. Cancer survivor rehabilitation and recovery: protocol for the Veterans Cancer Rehabilitation Study (Vet-CaRes). BMC Health Serv Res. 2013;13:93. Published 2013 Mar 11. doi:10.1186/1472-6963-13-93
32. Northwestern University. PROMIS Health Organization and the PROMIS Cooperative Group. PROMIS Short Form v2.0 - Physical Function 6b. Accessed September 24, 2021. https://www.healthmeasures.net/index.php?option=com_instruments&view=measure&id=793&Itemid=992
33. Northwestern University. PROMIS Health Organization and the PROMIS Cooperative Group. PROMIS Short Form v1.0 - Anxiety 6a. Accessed September 24, 2021. https://www.healthmeasures.net/index.php?option=com_instruments&view=measure&id=145&Itemid=992
34. Northwestern University. PROMIS Health Organization and the PROMIS Cooperative Group. PROMIS-43 Profile v2.1. Accessed September 24, 2021. https://www.healthmeasures.net/index.php?option=com_instruments&view=measure&id=858&Itemid=992
35. Todd NJ, Jones SH, Lobban FA. “Recovery” in bipolar disorder: how can service users be supported through a self-management intervention? A qualitative focus group study. J Ment Health. 2012;21(2):114-126. doi:10.3109/09638237.2011.621471
36. Finlay L. “Outing” the researcher: the provenance, process, and practice of reflexivity. Qual Health Res. 2002;12(4):531-545. doi:10.1177/104973202129120052
37. Herrera AP, Snipes SA, King DW, Torres-Vigil I, Goldberg DS, Weinberg AD. Disparate inclusion of older adults in clinical trials: priorities and opportunities for policy and practice change. Am J Public Health. 2010;10(suppl 1):S105-S112. doi:10.2105/AJPH.2009.162982
38. National Institutes of Health. Revision: NIH policy and guidelines on the inclusion of individuals across the lifespan as participants in research involving human subjects. Published December 19, 2017. Accessed September 22, 2021. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-18-116.html
39. Townsley CA, Selby R, Siu LL. Systematic review of barriers to the recruitment of older patients with cancer onto clinical trials. J Clin Oncol. 2005;23(13):3112-3124. doi:10.1200/JCO.2005.00.141
40. Vuong I, Wright J, Nolan MB, et al. Overcoming barriers: evidence-based strategies to increase enrollment of underrepresented populations in cancer therapeutic clinical trials-a narrative review. J Cancer Educ. 2020;35(5):841-849. doi:10.1007/s13187-019-01650-y
Development and Implementation of a Veterans’ Cancer Survivorship Program
The aging of the U.S. population has led to an increase in the number of patients diagnosed with cancer each year. Fortunately, advances in screening, detection, and treatments have contributed to an improvement in cancer survival rates during the past few decades. More than 1.6 million new cases of cancer are expected to be diagnosed in 2014. It is estimated that there are currently 14 million cancer survivors, and the number of survivors by 2022 is expected to be 18 million.1,2
The growing number of cancer survivors is exceeding the ability of the cancer care system to meet the demand.3 Many primary care providers (PCPs) lack the confidence to provide cancer surveillance for survivors, but at the same time, patients and physicians continue to expect that PCPs will play a substantial role in general preventive health and in treating other medical problems.4 These conditions make it critical that at a minimum, survivorship care is integrated between oncology and primary care teams through a systematic, coordinated plan.5 This integration is especially important for the vulnerable population of veterans who are cancer survivors, as they have additional survivorship needs.
The purpose of this article is to assist other VA health care providers in establishing a cancer survivorship program to address the unique needs of veterans not only during active treatment, but after their initial treatment is completed. Described are the unique needs of veterans who are cancer survivors and the development and implementation of a cancer survivorship program at a large metropolitan VAMC, which is grounded in VA and national guidelines and evidence-based cancer care. Lessons learned and recommendations for other VA programs seeking to improve coordination of care for veteran cancer survivors are presented.
Cancer Survivorship
The Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition, identified the importance of providing quality survivorship care to those “living with, through, and beyond a diagnosis of cancer.”6,7 The period of survivorship extends from the time of diagnosis, through treatment, long-term survival, and end-of-life.8,9 Although there are several definitions of cancer survivor, the most widely accepted definition is one who has been diagnosed with cancer, regardless of their position on the disease trajectory.8
The complex needs of cancer survivors encompass physical, psychological, social, and spiritual concerns across the disease trajectory.3 Cancer survivors who are also veterans have additional needs and risk factors related to their service that can make survivorship care more challenging.10 Veterans tend to be older compared with the age of the general population, have more comorbid conditions, and many have combat-related posttraumatic stress disorder (PTSD), all of which can complicate the survivorship experience.11
The first challenge for veteran cancer survivors is in the term cancer survivor, which may take on a different meaning for a veteran when compared with a civilian. For some civilians and veterans, survivor is a constant reminder of having had cancer. There are some veterans who prefer not to be called survivors, because they do not feel worthy of this terminology. They believe they have not struggled enough to self-identify as a survivor and that survivorship is “something to be earned, following a physically grueling experience.”12
The meaning of the word survivor may even be culturally linked to the population of veterans who have survived a life-threatening combat experience. More research is needed to understand the veteran cancer survivorship experience. The meaning of survivorship must be explored with each veteran, as it may influence his or her adherence to a survivorship plan of care.
Veterans make up a unique subset of cancer survivors, in part because of risk factors associated with their service. Many veterans developed cancer as a result of their military exposure to toxic chemicals and radiation. To date, VA recognizes that chronic B-cell leukemias, Hodgkin disease, multiple myeloma, non-Hodgkin lymphomas, prostate cancer, respiratory cancers, and soft tissue sarcomas are all presumptive diseases related to Agent Orange exposure.13 There are other substances also presumed to increase the risk of certain cancers in veterans who have had ionizing radiation exposure.14 There is still much to learn regarding veterans who served during the Gulf War, Operation Enduring Freedom, and Operation Iraqi Freedom.15,16
In a comparison of VA data files with U.S. SEER data files from 2007, researchers identified differences in characteristics between veteran cancer survivors and civilian cancer survivors.17 In addition to increased exposure risks, the veteran cancer survivor population is older than the general cancer survivorship population and is mostly male.17 Veterans’ comorbid conditions, such as type 2 diabetes, ischemic heart disease, Parkinson disease, and peripheral neuropathy, which may be service related, complicate survivorship.17 These characteristics (age, gender, exposure risks, and comorbid conditions) influence the type of cancer diagnosed and treatment options, and they may ultimately impact survivorship needs
(Table 1).
The prevalence of mental health issues in the veteran population is significant.18 Posttraumatic stress disorder affects 7% to 8% of the general population at some point during their lifetime and as many as 16% of those returning from military deployment.19 In a predominantly
male veteran study correlating combat PTSD with cancerrelated PTSD, about half the participants (n = 170) met PTSD Criterion A, viewing their cancer as a traumatic experience.20 Posttraumatic stress disorder, depression, anxiety, and addictive disease all must be addressed in the survivorship plan of care.
Poor mental health has been linked to increased morbidity and mortality and can limit the veteran’s ability to participate in health promotion and medical care.21 Distress related to cancer is well recognized in the civilian population.22,23 Veterans are at risk for moderate-tosevere disabling distress, especially when the cancer is associated with their military service. Vietnam veterans who have a diagnosis of cancer report that they have already served their time and are now serving it again, having to wage a battle on cancer and undergo difficult treatments and associated adverse effects (AEs).24 It is important to note, however, that some veterans have developed strong coping skills, which gives them strength and resilience for the survivorship experience.25
Other factors also contribute to veterans’ unique survivorship needs. Many veterans have limited social and/or economic resources, making it difficult to receive cancer treatment and follow recommendations for a healthful lifestyle as a cancer survivor. Demographics from the VA have illustrated that many veterans have a limited support system (65% do not have a spouse), and many have low incomes.26 Although veterans comprise about 11% of the general population, they make up 26% of the homeless population.26 It is estimated that 260,000 veterans are homeless at some time during the course of a year, and of these, 45% have mental health issues and 70% have substance abuse problems.27 Basic needs such as housing, running water, heat and electricity, and nutrition must be met in order to prevent infection during treatment, maximize the benefit, and reduce the risks associated with treatment. Transportation issues can make it challenging to travel to medical centers for cancer surveillance following treatment.
Models of Care
As defined in the aforementioned IOM report, multiple models of survivorship care have surfaced over the years.6 Much that was originally seen and implemented in adult cancer survivorship was known from pediatric cancer care. Early models that surfaced included shared care models, nurse-led models, and tertiary survivorship clinics. Each model has its strengths and disadvantages.
The shared care model of survivorship involves a sharing of the responsibility for the survivor among different specialties, potentially at different facilities, and the primary care team. Typically, the PCP refers the patient to the oncologist when cancer is suspected or diagnosed. The primary care team continues to provide routine health maintenance and manages other health problems while the oncology team provides cancer care. The patient is transitioned back to the primary care team with a survivorship care plan (SCP) at 1 to 2 years after completion of cancer therapy or at the discretion of the oncology team.28 For
this model to work, the PCP must be willing to take on this responsibility, and there must be a coordinated effort for seamless communication between teams, which can be potentially challenging.
Nurse-led programs emerged in the pediatric populations. Pediatric nurse-led clinics assume care of the patient after active treatment to manage long-term AEs of cancer treatments, symptom management, care planning, and education. A comprehensive review of the literature identified that “nurse-led follow-up services are acceptable, appropriate, and effective.”6 Barriers to this model of care include a shortage of trained oncology nurses and a preference for physician follow-up by some cancer survivors who want the security of their oncologist for ongoing, long-term care.6
Survivorship follow-up clinics, a tertiary model of care, have been implemented at some larger academic centers. These clinics focus on cancer survivorship and are often separate from other routine health care visits. Typically, these clinics include multiple specialties and are often disease-specific. These types of clinics pose a different set of challenges regarding duplication of services and reimbursement issues.
As of yet, no model has been proven more effective than the others. Each institution and patient population may not lend themselves to a one-size-fits-all model. There may be different models of care needed, based on patient population. Regardless of the model selected, individualized survivorship care plans are an essential component of quality cancer survivorship care.
Addessing Survivorship Care
In 2009, 5 interdisciplinary leaders in VA cancer care (Ellen Ballard, RN; David Haggstrom, MD, MAS; Veronica Reis, PhD; Mark Detzer, PhD; and Tina Gill, MA) attended a breakout session on psychosocial oncology at the Association of VA Hematology and Oncology (AVAHO) meeting in Minneapolis, Minnesota, and most members of this team participated in the 2009-2012 VHA Cancer Care Collaboratives to improve the timeliness and quality of care for veterans who were cancer patients. Dr. Haggstrom and Ms. Ballard developed a SharePoint site for the Survivorship Special Interest Group (SIG) members through the Loma Linda VAMC in California. The SIG workgroup then built the Cancer Survivorship Toolkit, composed of
5 critical tools (Figure).
In July 2012, the VA Cancer Survivorship Toolkit content was disseminated at AVAHO and launched behind the VA firewall. It subsequently received accolades from the national program director for VHA Oncology and was listed on the American College of Surgeons Commission on Cancer (CoC) Best Practices website. The toolkit is accessible to all VA programs, and suggestions for new content can be submitted directly on the site (Figure). 
The development of a SCP began in late 2011 when SIG members collected examples of SCPs from leading organizations. The members compared this content with the IOM recommendations for SCPs and developed a template. The template was programmed for the VHA computerized patient record system (CPRS) and placed on the internal VA toolkit website. The template included the treatment summary and care plan. The treatment summary portion included the diagnosis and tumor characteristics, diagnostic tests used, dates and types of treatment, chemoprevention or maintenance treatments, supportive services required, the surveillance plan, and signs of recurrence. The care plan portion provided information on the likely course of recovery and a checklist for common long-term AEs in the areas of psychological distress, financial and practical effects, and physical effects. Also included was information about referral, health behaviors, late effects that may develop, contact information, and general resource information.
The computer applications coordinator at any VA can download the template from the toolkit onto their CPRS, and the template can then be brought into any progress note. Individual sites may also edit the template to suit specific needs. The SCP can be completed by any clinician with the appropriate clinical competencies. To date, > 50 sites have downloaded the SCP template for use.
Cancer Survivorship Clinic
At the Louis Stokes Cleveland (LSC) VAMC, a nurse-led model of a cancer survivorship clinic was established with an expert nurse practitioner (NP). A major catalyst for the development of this clinic was the receipt of a Specialty Care Education Center of Excellence, funded by the Offices of Specialty Care and Academic Affiliations. A priority of this project was the implementation of survivorship care for every veteran with a cancer diagnosis. A system redesign was implemented to deliver quality, cost-effective, patient-centered cancer care within an interprofessional, team-based practice. This clinic is imbedded within an interdisciplinary clinic setting where the NP works in close collaboration with the medical and surgical oncologists as well as providers from mental health, social work, nutrition, physical therapy, and others.
The first patients to receive survivorship care in this new model from the time of their diagnosis were veterans with breast cancer, sarcoma, melanoma, and lymphomas. Veterans are followed jointly by the NP and the medical and surgical oncologists during active treatment. The NP provides physical symptom assessment and management for patients both during and after treatment.
At the end of active treatment, patient visits are alternated between oncology physicians and the survivorship NP for 5 years. The timeline for follow-up visits is based on National Comprehensive Cancer Network guidelines for each cancer type but then individualized based on patient need.29 During this 5-year time period, patients under active surveillance whose conditions have been stable are seen by the NP. Any concerning symptoms are immediately relayed to the primary oncologist or surgical oncologist, often the same day, and patients can be seen the same day if necessary, to improve coordination and access to services.
A unique focus of the clinic is the integration of health promotion and risk reduction that coincides with the active surveillance plan. This transition of active surveillance patients to the NP-led survivorship clinic not only opens access to newly diagnosed cancer patients to be seen by the oncologist, but also allows for seamless transition and coordination to active surveillance. Within the clinic structure, patients receive patient navigation beginning with a cancer concern; patients also receive screening for psychosocial distress at the time of diagnosis and at every visit. Patient navigation and distress screening are both considered essential elements to survivorship care in the most recent CoC guidelines.30 The survivorship NP keeps the primary care team up-to-date regarding patient care across the disease trajectory by alerting them to updates electronically in the CPRS in real time.
Survivorship Care Plan
A focus of the clinic has also been on the implementation of a formal SCP to be completed 3 months after the conclusion of active treatment. The formal SCP was downloaded from the Cancer Survivorship Toolkit and is composed of a 3-part summary. The 3 parts consist of the treatment summary, the plan for rehabilitation, and the plan for the future. The first section of the SCP is completed by the medical oncologist as a summary of treatment received by the veteran. The summary of treatment section is reviewed and discussed with the veteran survivor at the visit, and the second and third sections are completed during the 3-month follow-up visit with the veteran.
Success and Areas for Improvement
The survivorship clinic has been well received by veterans. Patient satisfaction scores have been overwhelmingly positive. Veterans appreciate and feel comfortable knowing their providers from the beginning of diagnosis along the entire disease trajectory. They know that if problems arise, the survivorship NP has direct access to the medical or surgical oncologist for immediate review.
The difficult challenge for the cancer care providers is to know when is the right time to transition care back to the PCP. Transitions of care often come with high anxiety and a sense of loss for the veteran. The 5-year survival mark is not always the appropriate transition time for some veterans. Those with extensive physical and mental health issues may need continuity of care and continued support from the oncology team.
The SCP has presented challenges in terms of when to complete and who should complete the form. There has also been concern over the length of the summary, how long it will take to complete the document, and which summary template to use. Areas for improvement with the template could potentially be to automate population of the chemotherapy and radiation summaries. Some software packages are available, but they are costly. Another issue with external software is getting it accepted by VHA and incorporated into the CPRS.
Recommendations
Many cancer programs are struggling to provide highquality survivorship care. The CoC, recognizing the challenges programs are having implementing survivorship care, has extended the accreditation requirement for full implementation from 2015 to 2019.31
The following recommendations should be considered for the successful implementation of a new survivorship program:
- Collect information from multiple resources to guide the establishment of the survivorship clinic;
- Become familiar with the IOM From Cancer Patient to Cancer Survivor: Lost in Transition;6
- Understand local issues and barriers specific to your care delivery system;
- Collaborate with key stakeholders from multiple specialties to gain momentum and buy-in;
- Hold regular meetings with stakeholders as well as leadership to identify and remove barriers to the clinic success;
- Join the VA Survivorship SIG to collaborate with other sites who have already started to pilot survivorship programs and discuss barriers to and successes of programs so as to not reinvent the wheel;
- Utilize the Cancer Survivorship Toolkit;
- Download the SCP;
- Establish a close partnership with your local cancer committee; and
- Collect and report data to show effectiveness and need.
All these strategies were vital to the success of the LSCVAMC survivorship program.
Summary
The VA is uniquely positioned to be a leader in highquality, comprehensive, and veteran-centered cancer survivorship care in the years ahead. The close relationship between specialty and primary care allows for smooth continuity of care and easy transitions between oncology and primary care. The comprehensive CPRS allows easy accessibility to information for the entire health care team. The Cancer Survivorship Toolkit provides a template of the survivorship care plan for the veteran and his or her health care providers.
The LSCVAMC is one of many VA institutions implementing quality care for cancer survivors and can serve as a role model for other VA programs initiating the survivorship care process (Table 2).
Author disclosures
The authors report no actual or potential conflicts of interest with regard to this article.
Disclaimer
The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review the complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.
1. American Cancer Society. Cancer Facts & Figures 2014. Atlanta, GA: American Cancer Society; 2014.
2. Institute of Medicine. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Levit LA, Balough EP, Nass SJ, Ganz PA, eds. Washington, DC: The National Academies Press; 2013.
3. Stricker CT, O’Brien M. Implementing the commission on cancer standards for survivorship care plans. Clin J Oncol Nurs. 2014;(suppl 18):15-22.
4. Cowens-Alvarado R, Sharpe K, Pratt-Chapman M, et al. Advancing survivorship care through the National Cancer Survivorship Resource Center: Developing American Cancer Society guidelines for primary care providers. CA Cancer J Clin. 2013;63(3):147-150.
5. Cheung WY, Neville BA, Cameron DB, Cook EF, Earle CC. Comparisons of patient and physician expectations for cancer survivorship care. J Clin Oncol. 2009;27(15):2489-2495.
6. Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Transition. Hewitt M, Greenfield S, Stovall E, eds. Washington, DC: The National Academies Press; 2006.
7. Clark EJ, Stovall EL, Leigh S, Siu AL, Austin DK, Rowland JH, eds. Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability. Silver Spring, MD: National Coalition for Cancer Survivorship; 1996.
8. National Cancer Institute. Survivorship. NCI Dictionary of Cancer Terms Website. http://www.cancer.gov/dictionary?CdrID=445089. Accessed December 3, 2014.
9. Siegel R, DeSantis C, Virgo K, et al. Cancer treatment and survivorship statistics, 2012. CA Cancer J Clin. 2012;62(4):220-241.
10. Moye J, Schuster JL, Latini DM, Naik AD. The future of cancer survivorship care for veterans. Fed Pract. 2010;27(3):36-43.
11. Naik AD, Martin LA, Karel M, et al. Cancer survivor rehabilitation and recovery: Protocol for the Veterans Cancer Rehabilitation Study (Vet-CaRes). BMC Health Serv Res. 2013;13:93.
12. Beehler GP, Rodriques AE, Kay MA, Kiviniemi MT, Steinbrenner L. Lasting impact: Understanding the psychosocial implications of cancer among military veterans. J Psychosoc Oncol. 2013:31(4):430-450.
13. U.S. Department of Veterans Affairs. Veterans’ diseases associated with Agent Orange. Public Health Website. http://www.publichealth.va.gov/exposures/agentorange/conditions/index.asp. Updated December 30, 2013. Accessed December3, 2014.
14. U.S. Department of Veterans Affairs. Radiation. Public Health Website. http://www.publichealth.va.gov/exposures/radiation/index.asp. Updated December 31, 2013. Accessed December 3, 2014.
15. Cohen BE, Gima K, Bertenthal D, Kim S, Marmar CR, Seal KH. Mental health diagnoses and utilization of VA non-mental health medical services among returning Iraq and Afghanistan veterans. J Gen Intern Med. 2010;25(1):18-24.
16. U.S. Department of Veterans Affairs. Gulf War veterans’ illnesses. Public Health Website. http://www.publichealth.va.gov/exposures/gulfwar/index.asp. Updated November 7, 2014. Accessed December 3, 2014.
17. National Cancer Institute. Cancer query systems. Surveillance, Epidemiology, and End Results Program Website. http://seer.cancer.gov/canques/index.html. Accessed December 3, 2014.
18. Suicide in the military: Army-NIH funded study points to risk and protective factors [news release]. Washington, DC: National Institute of Mental Health; March 3, 2014. http://www.nimh.nih.gov/news/science-news/2014/suicide-in-the-military-army-nih-funded-study-points-to-risk-and-protective-factors.shtml. Accessed December 3, 2014.
19. Gates MA, Holowka DW, Vasterling JJ, Keane TM, Marx BP, Rosen RC. Posttraumatic stress disorder in veterans and military personnel: Epidemiology, screening, and case recognition. Psychol Serv. 2012;9(4):361-382.
20. Mulligan EA, Schuster Wachen J, Naik AD, Gosian J, Moye J. Cancer as a criterion a traumatic stressor for veterans: Prevalence and correlates. Psychol Trauma. 2014;6(suppl 1):S73-S81.
21. Musuuza JS, Sherman ME, Knudsen KJ, Sweeney HA, Tyler CV, Koroukian SM. Analyzing excess mortality from cancer among individuals with mental illness. Cancer. 2013;119(13):2469-2476.
22. Zabora J, Macmurray L. The history of psychosocial screening among cancer patients. J Psychosoc Oncol. 2013:30(6):625-635.
23. Holland JC, Andersen B, Breitbart WS, et al. Distress management: Clinical practice guidelines in oncology. J Natl Compr Canc Netw. 2010:8(4):448-485.
24. Grassman DL. The Hero Within. St. Petersburg, FL: Vandamere Press; 2012.
25. Jahn AL, Herman L, Schuster J, Naik A, Moye J. Distress and resilience after cancer
in veterans. Res Hum Dev. 2012;9(3):229-247.
26. National Association of Social Workers. Social workers speak on veterans issues June 2009. National Association of Social Workers Website. http://www.naswdc.org/pressroom/2009/Social%20Work%20Veterans%20Fact%20Sheet.pdf. Accessed December 3, 2014.
27. Homeless. U.S. Department of Veterans Affairs Website. http://www.va.gov/homeless. Accessed December 3, 2014.
28. Oeffinger KC, McCabe MS. Models for delivering survivorship care. J Clin Oncol. 2006;24(32):5117-5124.
29. NCCN Guidelines. National Comprehensive Cancer Network Website. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#site. Accessed December 3, 2014.
30. American College of Surgeons, Commission on Cancer. Cancer program standards 2012, version 1.2.1: Ensuring patient-centered care. https://www.facs.org/~/media/file/quality%20programs/cancer/coc/programstandards2012.ashx. Published January 21, 2014. Accessed December 3, 2014.
31. Accreditation committee clarifications for standard 3.3 survivorship care plan. American College of Surgeons Website. https://www.facs.org/publications/newsletters/coc-source/special-source/standard33. Published September 9, 2014. Accessed December 3, 2014.
The aging of the U.S. population has led to an increase in the number of patients diagnosed with cancer each year. Fortunately, advances in screening, detection, and treatments have contributed to an improvement in cancer survival rates during the past few decades. More than 1.6 million new cases of cancer are expected to be diagnosed in 2014. It is estimated that there are currently 14 million cancer survivors, and the number of survivors by 2022 is expected to be 18 million.1,2
The growing number of cancer survivors is exceeding the ability of the cancer care system to meet the demand.3 Many primary care providers (PCPs) lack the confidence to provide cancer surveillance for survivors, but at the same time, patients and physicians continue to expect that PCPs will play a substantial role in general preventive health and in treating other medical problems.4 These conditions make it critical that at a minimum, survivorship care is integrated between oncology and primary care teams through a systematic, coordinated plan.5 This integration is especially important for the vulnerable population of veterans who are cancer survivors, as they have additional survivorship needs.
The purpose of this article is to assist other VA health care providers in establishing a cancer survivorship program to address the unique needs of veterans not only during active treatment, but after their initial treatment is completed. Described are the unique needs of veterans who are cancer survivors and the development and implementation of a cancer survivorship program at a large metropolitan VAMC, which is grounded in VA and national guidelines and evidence-based cancer care. Lessons learned and recommendations for other VA programs seeking to improve coordination of care for veteran cancer survivors are presented.
Cancer Survivorship
The Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition, identified the importance of providing quality survivorship care to those “living with, through, and beyond a diagnosis of cancer.”6,7 The period of survivorship extends from the time of diagnosis, through treatment, long-term survival, and end-of-life.8,9 Although there are several definitions of cancer survivor, the most widely accepted definition is one who has been diagnosed with cancer, regardless of their position on the disease trajectory.8
The complex needs of cancer survivors encompass physical, psychological, social, and spiritual concerns across the disease trajectory.3 Cancer survivors who are also veterans have additional needs and risk factors related to their service that can make survivorship care more challenging.10 Veterans tend to be older compared with the age of the general population, have more comorbid conditions, and many have combat-related posttraumatic stress disorder (PTSD), all of which can complicate the survivorship experience.11
The first challenge for veteran cancer survivors is in the term cancer survivor, which may take on a different meaning for a veteran when compared with a civilian. For some civilians and veterans, survivor is a constant reminder of having had cancer. There are some veterans who prefer not to be called survivors, because they do not feel worthy of this terminology. They believe they have not struggled enough to self-identify as a survivor and that survivorship is “something to be earned, following a physically grueling experience.”12
The meaning of the word survivor may even be culturally linked to the population of veterans who have survived a life-threatening combat experience. More research is needed to understand the veteran cancer survivorship experience. The meaning of survivorship must be explored with each veteran, as it may influence his or her adherence to a survivorship plan of care.
Veterans make up a unique subset of cancer survivors, in part because of risk factors associated with their service. Many veterans developed cancer as a result of their military exposure to toxic chemicals and radiation. To date, VA recognizes that chronic B-cell leukemias, Hodgkin disease, multiple myeloma, non-Hodgkin lymphomas, prostate cancer, respiratory cancers, and soft tissue sarcomas are all presumptive diseases related to Agent Orange exposure.13 There are other substances also presumed to increase the risk of certain cancers in veterans who have had ionizing radiation exposure.14 There is still much to learn regarding veterans who served during the Gulf War, Operation Enduring Freedom, and Operation Iraqi Freedom.15,16
In a comparison of VA data files with U.S. SEER data files from 2007, researchers identified differences in characteristics between veteran cancer survivors and civilian cancer survivors.17 In addition to increased exposure risks, the veteran cancer survivor population is older than the general cancer survivorship population and is mostly male.17 Veterans’ comorbid conditions, such as type 2 diabetes, ischemic heart disease, Parkinson disease, and peripheral neuropathy, which may be service related, complicate survivorship.17 These characteristics (age, gender, exposure risks, and comorbid conditions) influence the type of cancer diagnosed and treatment options, and they may ultimately impact survivorship needs
(Table 1).
The prevalence of mental health issues in the veteran population is significant.18 Posttraumatic stress disorder affects 7% to 8% of the general population at some point during their lifetime and as many as 16% of those returning from military deployment.19 In a predominantly
male veteran study correlating combat PTSD with cancerrelated PTSD, about half the participants (n = 170) met PTSD Criterion A, viewing their cancer as a traumatic experience.20 Posttraumatic stress disorder, depression, anxiety, and addictive disease all must be addressed in the survivorship plan of care.
Poor mental health has been linked to increased morbidity and mortality and can limit the veteran’s ability to participate in health promotion and medical care.21 Distress related to cancer is well recognized in the civilian population.22,23 Veterans are at risk for moderate-tosevere disabling distress, especially when the cancer is associated with their military service. Vietnam veterans who have a diagnosis of cancer report that they have already served their time and are now serving it again, having to wage a battle on cancer and undergo difficult treatments and associated adverse effects (AEs).24 It is important to note, however, that some veterans have developed strong coping skills, which gives them strength and resilience for the survivorship experience.25
Other factors also contribute to veterans’ unique survivorship needs. Many veterans have limited social and/or economic resources, making it difficult to receive cancer treatment and follow recommendations for a healthful lifestyle as a cancer survivor. Demographics from the VA have illustrated that many veterans have a limited support system (65% do not have a spouse), and many have low incomes.26 Although veterans comprise about 11% of the general population, they make up 26% of the homeless population.26 It is estimated that 260,000 veterans are homeless at some time during the course of a year, and of these, 45% have mental health issues and 70% have substance abuse problems.27 Basic needs such as housing, running water, heat and electricity, and nutrition must be met in order to prevent infection during treatment, maximize the benefit, and reduce the risks associated with treatment. Transportation issues can make it challenging to travel to medical centers for cancer surveillance following treatment.
Models of Care
As defined in the aforementioned IOM report, multiple models of survivorship care have surfaced over the years.6 Much that was originally seen and implemented in adult cancer survivorship was known from pediatric cancer care. Early models that surfaced included shared care models, nurse-led models, and tertiary survivorship clinics. Each model has its strengths and disadvantages.
The shared care model of survivorship involves a sharing of the responsibility for the survivor among different specialties, potentially at different facilities, and the primary care team. Typically, the PCP refers the patient to the oncologist when cancer is suspected or diagnosed. The primary care team continues to provide routine health maintenance and manages other health problems while the oncology team provides cancer care. The patient is transitioned back to the primary care team with a survivorship care plan (SCP) at 1 to 2 years after completion of cancer therapy or at the discretion of the oncology team.28 For
this model to work, the PCP must be willing to take on this responsibility, and there must be a coordinated effort for seamless communication between teams, which can be potentially challenging.
Nurse-led programs emerged in the pediatric populations. Pediatric nurse-led clinics assume care of the patient after active treatment to manage long-term AEs of cancer treatments, symptom management, care planning, and education. A comprehensive review of the literature identified that “nurse-led follow-up services are acceptable, appropriate, and effective.”6 Barriers to this model of care include a shortage of trained oncology nurses and a preference for physician follow-up by some cancer survivors who want the security of their oncologist for ongoing, long-term care.6
Survivorship follow-up clinics, a tertiary model of care, have been implemented at some larger academic centers. These clinics focus on cancer survivorship and are often separate from other routine health care visits. Typically, these clinics include multiple specialties and are often disease-specific. These types of clinics pose a different set of challenges regarding duplication of services and reimbursement issues.
As of yet, no model has been proven more effective than the others. Each institution and patient population may not lend themselves to a one-size-fits-all model. There may be different models of care needed, based on patient population. Regardless of the model selected, individualized survivorship care plans are an essential component of quality cancer survivorship care.
Addessing Survivorship Care
In 2009, 5 interdisciplinary leaders in VA cancer care (Ellen Ballard, RN; David Haggstrom, MD, MAS; Veronica Reis, PhD; Mark Detzer, PhD; and Tina Gill, MA) attended a breakout session on psychosocial oncology at the Association of VA Hematology and Oncology (AVAHO) meeting in Minneapolis, Minnesota, and most members of this team participated in the 2009-2012 VHA Cancer Care Collaboratives to improve the timeliness and quality of care for veterans who were cancer patients. Dr. Haggstrom and Ms. Ballard developed a SharePoint site for the Survivorship Special Interest Group (SIG) members through the Loma Linda VAMC in California. The SIG workgroup then built the Cancer Survivorship Toolkit, composed of
5 critical tools (Figure).
In July 2012, the VA Cancer Survivorship Toolkit content was disseminated at AVAHO and launched behind the VA firewall. It subsequently received accolades from the national program director for VHA Oncology and was listed on the American College of Surgeons Commission on Cancer (CoC) Best Practices website. The toolkit is accessible to all VA programs, and suggestions for new content can be submitted directly on the site (Figure).
The development of a SCP began in late 2011 when SIG members collected examples of SCPs from leading organizations. The members compared this content with the IOM recommendations for SCPs and developed a template. The template was programmed for the VHA computerized patient record system (CPRS) and placed on the internal VA toolkit website. The template included the treatment summary and care plan. The treatment summary portion included the diagnosis and tumor characteristics, diagnostic tests used, dates and types of treatment, chemoprevention or maintenance treatments, supportive services required, the surveillance plan, and signs of recurrence. The care plan portion provided information on the likely course of recovery and a checklist for common long-term AEs in the areas of psychological distress, financial and practical effects, and physical effects. Also included was information about referral, health behaviors, late effects that may develop, contact information, and general resource information.
The computer applications coordinator at any VA can download the template from the toolkit onto their CPRS, and the template can then be brought into any progress note. Individual sites may also edit the template to suit specific needs. The SCP can be completed by any clinician with the appropriate clinical competencies. To date, > 50 sites have downloaded the SCP template for use.
Cancer Survivorship Clinic
At the Louis Stokes Cleveland (LSC) VAMC, a nurse-led model of a cancer survivorship clinic was established with an expert nurse practitioner (NP). A major catalyst for the development of this clinic was the receipt of a Specialty Care Education Center of Excellence, funded by the Offices of Specialty Care and Academic Affiliations. A priority of this project was the implementation of survivorship care for every veteran with a cancer diagnosis. A system redesign was implemented to deliver quality, cost-effective, patient-centered cancer care within an interprofessional, team-based practice. This clinic is imbedded within an interdisciplinary clinic setting where the NP works in close collaboration with the medical and surgical oncologists as well as providers from mental health, social work, nutrition, physical therapy, and others.
The first patients to receive survivorship care in this new model from the time of their diagnosis were veterans with breast cancer, sarcoma, melanoma, and lymphomas. Veterans are followed jointly by the NP and the medical and surgical oncologists during active treatment. The NP provides physical symptom assessment and management for patients both during and after treatment.
At the end of active treatment, patient visits are alternated between oncology physicians and the survivorship NP for 5 years. The timeline for follow-up visits is based on National Comprehensive Cancer Network guidelines for each cancer type but then individualized based on patient need.29 During this 5-year time period, patients under active surveillance whose conditions have been stable are seen by the NP. Any concerning symptoms are immediately relayed to the primary oncologist or surgical oncologist, often the same day, and patients can be seen the same day if necessary, to improve coordination and access to services.
A unique focus of the clinic is the integration of health promotion and risk reduction that coincides with the active surveillance plan. This transition of active surveillance patients to the NP-led survivorship clinic not only opens access to newly diagnosed cancer patients to be seen by the oncologist, but also allows for seamless transition and coordination to active surveillance. Within the clinic structure, patients receive patient navigation beginning with a cancer concern; patients also receive screening for psychosocial distress at the time of diagnosis and at every visit. Patient navigation and distress screening are both considered essential elements to survivorship care in the most recent CoC guidelines.30 The survivorship NP keeps the primary care team up-to-date regarding patient care across the disease trajectory by alerting them to updates electronically in the CPRS in real time.
Survivorship Care Plan
A focus of the clinic has also been on the implementation of a formal SCP to be completed 3 months after the conclusion of active treatment. The formal SCP was downloaded from the Cancer Survivorship Toolkit and is composed of a 3-part summary. The 3 parts consist of the treatment summary, the plan for rehabilitation, and the plan for the future. The first section of the SCP is completed by the medical oncologist as a summary of treatment received by the veteran. The summary of treatment section is reviewed and discussed with the veteran survivor at the visit, and the second and third sections are completed during the 3-month follow-up visit with the veteran.
Success and Areas for Improvement
The survivorship clinic has been well received by veterans. Patient satisfaction scores have been overwhelmingly positive. Veterans appreciate and feel comfortable knowing their providers from the beginning of diagnosis along the entire disease trajectory. They know that if problems arise, the survivorship NP has direct access to the medical or surgical oncologist for immediate review.
The difficult challenge for the cancer care providers is to know when is the right time to transition care back to the PCP. Transitions of care often come with high anxiety and a sense of loss for the veteran. The 5-year survival mark is not always the appropriate transition time for some veterans. Those with extensive physical and mental health issues may need continuity of care and continued support from the oncology team.
The SCP has presented challenges in terms of when to complete and who should complete the form. There has also been concern over the length of the summary, how long it will take to complete the document, and which summary template to use. Areas for improvement with the template could potentially be to automate population of the chemotherapy and radiation summaries. Some software packages are available, but they are costly. Another issue with external software is getting it accepted by VHA and incorporated into the CPRS.
Recommendations
Many cancer programs are struggling to provide highquality survivorship care. The CoC, recognizing the challenges programs are having implementing survivorship care, has extended the accreditation requirement for full implementation from 2015 to 2019.31
The following recommendations should be considered for the successful implementation of a new survivorship program:
- Collect information from multiple resources to guide the establishment of the survivorship clinic;
- Become familiar with the IOM From Cancer Patient to Cancer Survivor: Lost in Transition;6
- Understand local issues and barriers specific to your care delivery system;
- Collaborate with key stakeholders from multiple specialties to gain momentum and buy-in;
- Hold regular meetings with stakeholders as well as leadership to identify and remove barriers to the clinic success;
- Join the VA Survivorship SIG to collaborate with other sites who have already started to pilot survivorship programs and discuss barriers to and successes of programs so as to not reinvent the wheel;
- Utilize the Cancer Survivorship Toolkit;
- Download the SCP;
- Establish a close partnership with your local cancer committee; and
- Collect and report data to show effectiveness and need.
All these strategies were vital to the success of the LSCVAMC survivorship program.
Summary
The VA is uniquely positioned to be a leader in highquality, comprehensive, and veteran-centered cancer survivorship care in the years ahead. The close relationship between specialty and primary care allows for smooth continuity of care and easy transitions between oncology and primary care. The comprehensive CPRS allows easy accessibility to information for the entire health care team. The Cancer Survivorship Toolkit provides a template of the survivorship care plan for the veteran and his or her health care providers.
The LSCVAMC is one of many VA institutions implementing quality care for cancer survivors and can serve as a role model for other VA programs initiating the survivorship care process (Table 2).
Author disclosures
The authors report no actual or potential conflicts of interest with regard to this article.
Disclaimer
The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review the complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.
The aging of the U.S. population has led to an increase in the number of patients diagnosed with cancer each year. Fortunately, advances in screening, detection, and treatments have contributed to an improvement in cancer survival rates during the past few decades. More than 1.6 million new cases of cancer are expected to be diagnosed in 2014. It is estimated that there are currently 14 million cancer survivors, and the number of survivors by 2022 is expected to be 18 million.1,2
The growing number of cancer survivors is exceeding the ability of the cancer care system to meet the demand.3 Many primary care providers (PCPs) lack the confidence to provide cancer surveillance for survivors, but at the same time, patients and physicians continue to expect that PCPs will play a substantial role in general preventive health and in treating other medical problems.4 These conditions make it critical that at a minimum, survivorship care is integrated between oncology and primary care teams through a systematic, coordinated plan.5 This integration is especially important for the vulnerable population of veterans who are cancer survivors, as they have additional survivorship needs.
The purpose of this article is to assist other VA health care providers in establishing a cancer survivorship program to address the unique needs of veterans not only during active treatment, but after their initial treatment is completed. Described are the unique needs of veterans who are cancer survivors and the development and implementation of a cancer survivorship program at a large metropolitan VAMC, which is grounded in VA and national guidelines and evidence-based cancer care. Lessons learned and recommendations for other VA programs seeking to improve coordination of care for veteran cancer survivors are presented.
Cancer Survivorship
The Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition, identified the importance of providing quality survivorship care to those “living with, through, and beyond a diagnosis of cancer.”6,7 The period of survivorship extends from the time of diagnosis, through treatment, long-term survival, and end-of-life.8,9 Although there are several definitions of cancer survivor, the most widely accepted definition is one who has been diagnosed with cancer, regardless of their position on the disease trajectory.8
The complex needs of cancer survivors encompass physical, psychological, social, and spiritual concerns across the disease trajectory.3 Cancer survivors who are also veterans have additional needs and risk factors related to their service that can make survivorship care more challenging.10 Veterans tend to be older compared with the age of the general population, have more comorbid conditions, and many have combat-related posttraumatic stress disorder (PTSD), all of which can complicate the survivorship experience.11
The first challenge for veteran cancer survivors is in the term cancer survivor, which may take on a different meaning for a veteran when compared with a civilian. For some civilians and veterans, survivor is a constant reminder of having had cancer. There are some veterans who prefer not to be called survivors, because they do not feel worthy of this terminology. They believe they have not struggled enough to self-identify as a survivor and that survivorship is “something to be earned, following a physically grueling experience.”12
The meaning of the word survivor may even be culturally linked to the population of veterans who have survived a life-threatening combat experience. More research is needed to understand the veteran cancer survivorship experience. The meaning of survivorship must be explored with each veteran, as it may influence his or her adherence to a survivorship plan of care.
Veterans make up a unique subset of cancer survivors, in part because of risk factors associated with their service. Many veterans developed cancer as a result of their military exposure to toxic chemicals and radiation. To date, VA recognizes that chronic B-cell leukemias, Hodgkin disease, multiple myeloma, non-Hodgkin lymphomas, prostate cancer, respiratory cancers, and soft tissue sarcomas are all presumptive diseases related to Agent Orange exposure.13 There are other substances also presumed to increase the risk of certain cancers in veterans who have had ionizing radiation exposure.14 There is still much to learn regarding veterans who served during the Gulf War, Operation Enduring Freedom, and Operation Iraqi Freedom.15,16
In a comparison of VA data files with U.S. SEER data files from 2007, researchers identified differences in characteristics between veteran cancer survivors and civilian cancer survivors.17 In addition to increased exposure risks, the veteran cancer survivor population is older than the general cancer survivorship population and is mostly male.17 Veterans’ comorbid conditions, such as type 2 diabetes, ischemic heart disease, Parkinson disease, and peripheral neuropathy, which may be service related, complicate survivorship.17 These characteristics (age, gender, exposure risks, and comorbid conditions) influence the type of cancer diagnosed and treatment options, and they may ultimately impact survivorship needs
(Table 1).
The prevalence of mental health issues in the veteran population is significant.18 Posttraumatic stress disorder affects 7% to 8% of the general population at some point during their lifetime and as many as 16% of those returning from military deployment.19 In a predominantly
male veteran study correlating combat PTSD with cancerrelated PTSD, about half the participants (n = 170) met PTSD Criterion A, viewing their cancer as a traumatic experience.20 Posttraumatic stress disorder, depression, anxiety, and addictive disease all must be addressed in the survivorship plan of care.
Poor mental health has been linked to increased morbidity and mortality and can limit the veteran’s ability to participate in health promotion and medical care.21 Distress related to cancer is well recognized in the civilian population.22,23 Veterans are at risk for moderate-tosevere disabling distress, especially when the cancer is associated with their military service. Vietnam veterans who have a diagnosis of cancer report that they have already served their time and are now serving it again, having to wage a battle on cancer and undergo difficult treatments and associated adverse effects (AEs).24 It is important to note, however, that some veterans have developed strong coping skills, which gives them strength and resilience for the survivorship experience.25
Other factors also contribute to veterans’ unique survivorship needs. Many veterans have limited social and/or economic resources, making it difficult to receive cancer treatment and follow recommendations for a healthful lifestyle as a cancer survivor. Demographics from the VA have illustrated that many veterans have a limited support system (65% do not have a spouse), and many have low incomes.26 Although veterans comprise about 11% of the general population, they make up 26% of the homeless population.26 It is estimated that 260,000 veterans are homeless at some time during the course of a year, and of these, 45% have mental health issues and 70% have substance abuse problems.27 Basic needs such as housing, running water, heat and electricity, and nutrition must be met in order to prevent infection during treatment, maximize the benefit, and reduce the risks associated with treatment. Transportation issues can make it challenging to travel to medical centers for cancer surveillance following treatment.
Models of Care
As defined in the aforementioned IOM report, multiple models of survivorship care have surfaced over the years.6 Much that was originally seen and implemented in adult cancer survivorship was known from pediatric cancer care. Early models that surfaced included shared care models, nurse-led models, and tertiary survivorship clinics. Each model has its strengths and disadvantages.
The shared care model of survivorship involves a sharing of the responsibility for the survivor among different specialties, potentially at different facilities, and the primary care team. Typically, the PCP refers the patient to the oncologist when cancer is suspected or diagnosed. The primary care team continues to provide routine health maintenance and manages other health problems while the oncology team provides cancer care. The patient is transitioned back to the primary care team with a survivorship care plan (SCP) at 1 to 2 years after completion of cancer therapy or at the discretion of the oncology team.28 For
this model to work, the PCP must be willing to take on this responsibility, and there must be a coordinated effort for seamless communication between teams, which can be potentially challenging.
Nurse-led programs emerged in the pediatric populations. Pediatric nurse-led clinics assume care of the patient after active treatment to manage long-term AEs of cancer treatments, symptom management, care planning, and education. A comprehensive review of the literature identified that “nurse-led follow-up services are acceptable, appropriate, and effective.”6 Barriers to this model of care include a shortage of trained oncology nurses and a preference for physician follow-up by some cancer survivors who want the security of their oncologist for ongoing, long-term care.6
Survivorship follow-up clinics, a tertiary model of care, have been implemented at some larger academic centers. These clinics focus on cancer survivorship and are often separate from other routine health care visits. Typically, these clinics include multiple specialties and are often disease-specific. These types of clinics pose a different set of challenges regarding duplication of services and reimbursement issues.
As of yet, no model has been proven more effective than the others. Each institution and patient population may not lend themselves to a one-size-fits-all model. There may be different models of care needed, based on patient population. Regardless of the model selected, individualized survivorship care plans are an essential component of quality cancer survivorship care.
Addessing Survivorship Care
In 2009, 5 interdisciplinary leaders in VA cancer care (Ellen Ballard, RN; David Haggstrom, MD, MAS; Veronica Reis, PhD; Mark Detzer, PhD; and Tina Gill, MA) attended a breakout session on psychosocial oncology at the Association of VA Hematology and Oncology (AVAHO) meeting in Minneapolis, Minnesota, and most members of this team participated in the 2009-2012 VHA Cancer Care Collaboratives to improve the timeliness and quality of care for veterans who were cancer patients. Dr. Haggstrom and Ms. Ballard developed a SharePoint site for the Survivorship Special Interest Group (SIG) members through the Loma Linda VAMC in California. The SIG workgroup then built the Cancer Survivorship Toolkit, composed of
5 critical tools (Figure).
In July 2012, the VA Cancer Survivorship Toolkit content was disseminated at AVAHO and launched behind the VA firewall. It subsequently received accolades from the national program director for VHA Oncology and was listed on the American College of Surgeons Commission on Cancer (CoC) Best Practices website. The toolkit is accessible to all VA programs, and suggestions for new content can be submitted directly on the site (Figure).
The development of a SCP began in late 2011 when SIG members collected examples of SCPs from leading organizations. The members compared this content with the IOM recommendations for SCPs and developed a template. The template was programmed for the VHA computerized patient record system (CPRS) and placed on the internal VA toolkit website. The template included the treatment summary and care plan. The treatment summary portion included the diagnosis and tumor characteristics, diagnostic tests used, dates and types of treatment, chemoprevention or maintenance treatments, supportive services required, the surveillance plan, and signs of recurrence. The care plan portion provided information on the likely course of recovery and a checklist for common long-term AEs in the areas of psychological distress, financial and practical effects, and physical effects. Also included was information about referral, health behaviors, late effects that may develop, contact information, and general resource information.
The computer applications coordinator at any VA can download the template from the toolkit onto their CPRS, and the template can then be brought into any progress note. Individual sites may also edit the template to suit specific needs. The SCP can be completed by any clinician with the appropriate clinical competencies. To date, > 50 sites have downloaded the SCP template for use.
Cancer Survivorship Clinic
At the Louis Stokes Cleveland (LSC) VAMC, a nurse-led model of a cancer survivorship clinic was established with an expert nurse practitioner (NP). A major catalyst for the development of this clinic was the receipt of a Specialty Care Education Center of Excellence, funded by the Offices of Specialty Care and Academic Affiliations. A priority of this project was the implementation of survivorship care for every veteran with a cancer diagnosis. A system redesign was implemented to deliver quality, cost-effective, patient-centered cancer care within an interprofessional, team-based practice. This clinic is imbedded within an interdisciplinary clinic setting where the NP works in close collaboration with the medical and surgical oncologists as well as providers from mental health, social work, nutrition, physical therapy, and others.
The first patients to receive survivorship care in this new model from the time of their diagnosis were veterans with breast cancer, sarcoma, melanoma, and lymphomas. Veterans are followed jointly by the NP and the medical and surgical oncologists during active treatment. The NP provides physical symptom assessment and management for patients both during and after treatment.
At the end of active treatment, patient visits are alternated between oncology physicians and the survivorship NP for 5 years. The timeline for follow-up visits is based on National Comprehensive Cancer Network guidelines for each cancer type but then individualized based on patient need.29 During this 5-year time period, patients under active surveillance whose conditions have been stable are seen by the NP. Any concerning symptoms are immediately relayed to the primary oncologist or surgical oncologist, often the same day, and patients can be seen the same day if necessary, to improve coordination and access to services.
A unique focus of the clinic is the integration of health promotion and risk reduction that coincides with the active surveillance plan. This transition of active surveillance patients to the NP-led survivorship clinic not only opens access to newly diagnosed cancer patients to be seen by the oncologist, but also allows for seamless transition and coordination to active surveillance. Within the clinic structure, patients receive patient navigation beginning with a cancer concern; patients also receive screening for psychosocial distress at the time of diagnosis and at every visit. Patient navigation and distress screening are both considered essential elements to survivorship care in the most recent CoC guidelines.30 The survivorship NP keeps the primary care team up-to-date regarding patient care across the disease trajectory by alerting them to updates electronically in the CPRS in real time.
Survivorship Care Plan
A focus of the clinic has also been on the implementation of a formal SCP to be completed 3 months after the conclusion of active treatment. The formal SCP was downloaded from the Cancer Survivorship Toolkit and is composed of a 3-part summary. The 3 parts consist of the treatment summary, the plan for rehabilitation, and the plan for the future. The first section of the SCP is completed by the medical oncologist as a summary of treatment received by the veteran. The summary of treatment section is reviewed and discussed with the veteran survivor at the visit, and the second and third sections are completed during the 3-month follow-up visit with the veteran.
Success and Areas for Improvement
The survivorship clinic has been well received by veterans. Patient satisfaction scores have been overwhelmingly positive. Veterans appreciate and feel comfortable knowing their providers from the beginning of diagnosis along the entire disease trajectory. They know that if problems arise, the survivorship NP has direct access to the medical or surgical oncologist for immediate review.
The difficult challenge for the cancer care providers is to know when is the right time to transition care back to the PCP. Transitions of care often come with high anxiety and a sense of loss for the veteran. The 5-year survival mark is not always the appropriate transition time for some veterans. Those with extensive physical and mental health issues may need continuity of care and continued support from the oncology team.
The SCP has presented challenges in terms of when to complete and who should complete the form. There has also been concern over the length of the summary, how long it will take to complete the document, and which summary template to use. Areas for improvement with the template could potentially be to automate population of the chemotherapy and radiation summaries. Some software packages are available, but they are costly. Another issue with external software is getting it accepted by VHA and incorporated into the CPRS.
Recommendations
Many cancer programs are struggling to provide highquality survivorship care. The CoC, recognizing the challenges programs are having implementing survivorship care, has extended the accreditation requirement for full implementation from 2015 to 2019.31
The following recommendations should be considered for the successful implementation of a new survivorship program:
- Collect information from multiple resources to guide the establishment of the survivorship clinic;
- Become familiar with the IOM From Cancer Patient to Cancer Survivor: Lost in Transition;6
- Understand local issues and barriers specific to your care delivery system;
- Collaborate with key stakeholders from multiple specialties to gain momentum and buy-in;
- Hold regular meetings with stakeholders as well as leadership to identify and remove barriers to the clinic success;
- Join the VA Survivorship SIG to collaborate with other sites who have already started to pilot survivorship programs and discuss barriers to and successes of programs so as to not reinvent the wheel;
- Utilize the Cancer Survivorship Toolkit;
- Download the SCP;
- Establish a close partnership with your local cancer committee; and
- Collect and report data to show effectiveness and need.
All these strategies were vital to the success of the LSCVAMC survivorship program.
Summary
The VA is uniquely positioned to be a leader in highquality, comprehensive, and veteran-centered cancer survivorship care in the years ahead. The close relationship between specialty and primary care allows for smooth continuity of care and easy transitions between oncology and primary care. The comprehensive CPRS allows easy accessibility to information for the entire health care team. The Cancer Survivorship Toolkit provides a template of the survivorship care plan for the veteran and his or her health care providers.
The LSCVAMC is one of many VA institutions implementing quality care for cancer survivors and can serve as a role model for other VA programs initiating the survivorship care process (Table 2).
Author disclosures
The authors report no actual or potential conflicts of interest with regard to this article.
Disclaimer
The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review the complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.
1. American Cancer Society. Cancer Facts & Figures 2014. Atlanta, GA: American Cancer Society; 2014.
2. Institute of Medicine. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Levit LA, Balough EP, Nass SJ, Ganz PA, eds. Washington, DC: The National Academies Press; 2013.
3. Stricker CT, O’Brien M. Implementing the commission on cancer standards for survivorship care plans. Clin J Oncol Nurs. 2014;(suppl 18):15-22.
4. Cowens-Alvarado R, Sharpe K, Pratt-Chapman M, et al. Advancing survivorship care through the National Cancer Survivorship Resource Center: Developing American Cancer Society guidelines for primary care providers. CA Cancer J Clin. 2013;63(3):147-150.
5. Cheung WY, Neville BA, Cameron DB, Cook EF, Earle CC. Comparisons of patient and physician expectations for cancer survivorship care. J Clin Oncol. 2009;27(15):2489-2495.
6. Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Transition. Hewitt M, Greenfield S, Stovall E, eds. Washington, DC: The National Academies Press; 2006.
7. Clark EJ, Stovall EL, Leigh S, Siu AL, Austin DK, Rowland JH, eds. Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability. Silver Spring, MD: National Coalition for Cancer Survivorship; 1996.
8. National Cancer Institute. Survivorship. NCI Dictionary of Cancer Terms Website. http://www.cancer.gov/dictionary?CdrID=445089. Accessed December 3, 2014.
9. Siegel R, DeSantis C, Virgo K, et al. Cancer treatment and survivorship statistics, 2012. CA Cancer J Clin. 2012;62(4):220-241.
10. Moye J, Schuster JL, Latini DM, Naik AD. The future of cancer survivorship care for veterans. Fed Pract. 2010;27(3):36-43.
11. Naik AD, Martin LA, Karel M, et al. Cancer survivor rehabilitation and recovery: Protocol for the Veterans Cancer Rehabilitation Study (Vet-CaRes). BMC Health Serv Res. 2013;13:93.
12. Beehler GP, Rodriques AE, Kay MA, Kiviniemi MT, Steinbrenner L. Lasting impact: Understanding the psychosocial implications of cancer among military veterans. J Psychosoc Oncol. 2013:31(4):430-450.
13. U.S. Department of Veterans Affairs. Veterans’ diseases associated with Agent Orange. Public Health Website. http://www.publichealth.va.gov/exposures/agentorange/conditions/index.asp. Updated December 30, 2013. Accessed December3, 2014.
14. U.S. Department of Veterans Affairs. Radiation. Public Health Website. http://www.publichealth.va.gov/exposures/radiation/index.asp. Updated December 31, 2013. Accessed December 3, 2014.
15. Cohen BE, Gima K, Bertenthal D, Kim S, Marmar CR, Seal KH. Mental health diagnoses and utilization of VA non-mental health medical services among returning Iraq and Afghanistan veterans. J Gen Intern Med. 2010;25(1):18-24.
16. U.S. Department of Veterans Affairs. Gulf War veterans’ illnesses. Public Health Website. http://www.publichealth.va.gov/exposures/gulfwar/index.asp. Updated November 7, 2014. Accessed December 3, 2014.
17. National Cancer Institute. Cancer query systems. Surveillance, Epidemiology, and End Results Program Website. http://seer.cancer.gov/canques/index.html. Accessed December 3, 2014.
18. Suicide in the military: Army-NIH funded study points to risk and protective factors [news release]. Washington, DC: National Institute of Mental Health; March 3, 2014. http://www.nimh.nih.gov/news/science-news/2014/suicide-in-the-military-army-nih-funded-study-points-to-risk-and-protective-factors.shtml. Accessed December 3, 2014.
19. Gates MA, Holowka DW, Vasterling JJ, Keane TM, Marx BP, Rosen RC. Posttraumatic stress disorder in veterans and military personnel: Epidemiology, screening, and case recognition. Psychol Serv. 2012;9(4):361-382.
20. Mulligan EA, Schuster Wachen J, Naik AD, Gosian J, Moye J. Cancer as a criterion a traumatic stressor for veterans: Prevalence and correlates. Psychol Trauma. 2014;6(suppl 1):S73-S81.
21. Musuuza JS, Sherman ME, Knudsen KJ, Sweeney HA, Tyler CV, Koroukian SM. Analyzing excess mortality from cancer among individuals with mental illness. Cancer. 2013;119(13):2469-2476.
22. Zabora J, Macmurray L. The history of psychosocial screening among cancer patients. J Psychosoc Oncol. 2013:30(6):625-635.
23. Holland JC, Andersen B, Breitbart WS, et al. Distress management: Clinical practice guidelines in oncology. J Natl Compr Canc Netw. 2010:8(4):448-485.
24. Grassman DL. The Hero Within. St. Petersburg, FL: Vandamere Press; 2012.
25. Jahn AL, Herman L, Schuster J, Naik A, Moye J. Distress and resilience after cancer
in veterans. Res Hum Dev. 2012;9(3):229-247.
26. National Association of Social Workers. Social workers speak on veterans issues June 2009. National Association of Social Workers Website. http://www.naswdc.org/pressroom/2009/Social%20Work%20Veterans%20Fact%20Sheet.pdf. Accessed December 3, 2014.
27. Homeless. U.S. Department of Veterans Affairs Website. http://www.va.gov/homeless. Accessed December 3, 2014.
28. Oeffinger KC, McCabe MS. Models for delivering survivorship care. J Clin Oncol. 2006;24(32):5117-5124.
29. NCCN Guidelines. National Comprehensive Cancer Network Website. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#site. Accessed December 3, 2014.
30. American College of Surgeons, Commission on Cancer. Cancer program standards 2012, version 1.2.1: Ensuring patient-centered care. https://www.facs.org/~/media/file/quality%20programs/cancer/coc/programstandards2012.ashx. Published January 21, 2014. Accessed December 3, 2014.
31. Accreditation committee clarifications for standard 3.3 survivorship care plan. American College of Surgeons Website. https://www.facs.org/publications/newsletters/coc-source/special-source/standard33. Published September 9, 2014. Accessed December 3, 2014.
1. American Cancer Society. Cancer Facts & Figures 2014. Atlanta, GA: American Cancer Society; 2014.
2. Institute of Medicine. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Levit LA, Balough EP, Nass SJ, Ganz PA, eds. Washington, DC: The National Academies Press; 2013.
3. Stricker CT, O’Brien M. Implementing the commission on cancer standards for survivorship care plans. Clin J Oncol Nurs. 2014;(suppl 18):15-22.
4. Cowens-Alvarado R, Sharpe K, Pratt-Chapman M, et al. Advancing survivorship care through the National Cancer Survivorship Resource Center: Developing American Cancer Society guidelines for primary care providers. CA Cancer J Clin. 2013;63(3):147-150.
5. Cheung WY, Neville BA, Cameron DB, Cook EF, Earle CC. Comparisons of patient and physician expectations for cancer survivorship care. J Clin Oncol. 2009;27(15):2489-2495.
6. Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Transition. Hewitt M, Greenfield S, Stovall E, eds. Washington, DC: The National Academies Press; 2006.
7. Clark EJ, Stovall EL, Leigh S, Siu AL, Austin DK, Rowland JH, eds. Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability. Silver Spring, MD: National Coalition for Cancer Survivorship; 1996.
8. National Cancer Institute. Survivorship. NCI Dictionary of Cancer Terms Website. http://www.cancer.gov/dictionary?CdrID=445089. Accessed December 3, 2014.
9. Siegel R, DeSantis C, Virgo K, et al. Cancer treatment and survivorship statistics, 2012. CA Cancer J Clin. 2012;62(4):220-241.
10. Moye J, Schuster JL, Latini DM, Naik AD. The future of cancer survivorship care for veterans. Fed Pract. 2010;27(3):36-43.
11. Naik AD, Martin LA, Karel M, et al. Cancer survivor rehabilitation and recovery: Protocol for the Veterans Cancer Rehabilitation Study (Vet-CaRes). BMC Health Serv Res. 2013;13:93.
12. Beehler GP, Rodriques AE, Kay MA, Kiviniemi MT, Steinbrenner L. Lasting impact: Understanding the psychosocial implications of cancer among military veterans. J Psychosoc Oncol. 2013:31(4):430-450.
13. U.S. Department of Veterans Affairs. Veterans’ diseases associated with Agent Orange. Public Health Website. http://www.publichealth.va.gov/exposures/agentorange/conditions/index.asp. Updated December 30, 2013. Accessed December3, 2014.
14. U.S. Department of Veterans Affairs. Radiation. Public Health Website. http://www.publichealth.va.gov/exposures/radiation/index.asp. Updated December 31, 2013. Accessed December 3, 2014.
15. Cohen BE, Gima K, Bertenthal D, Kim S, Marmar CR, Seal KH. Mental health diagnoses and utilization of VA non-mental health medical services among returning Iraq and Afghanistan veterans. J Gen Intern Med. 2010;25(1):18-24.
16. U.S. Department of Veterans Affairs. Gulf War veterans’ illnesses. Public Health Website. http://www.publichealth.va.gov/exposures/gulfwar/index.asp. Updated November 7, 2014. Accessed December 3, 2014.
17. National Cancer Institute. Cancer query systems. Surveillance, Epidemiology, and End Results Program Website. http://seer.cancer.gov/canques/index.html. Accessed December 3, 2014.
18. Suicide in the military: Army-NIH funded study points to risk and protective factors [news release]. Washington, DC: National Institute of Mental Health; March 3, 2014. http://www.nimh.nih.gov/news/science-news/2014/suicide-in-the-military-army-nih-funded-study-points-to-risk-and-protective-factors.shtml. Accessed December 3, 2014.
19. Gates MA, Holowka DW, Vasterling JJ, Keane TM, Marx BP, Rosen RC. Posttraumatic stress disorder in veterans and military personnel: Epidemiology, screening, and case recognition. Psychol Serv. 2012;9(4):361-382.
20. Mulligan EA, Schuster Wachen J, Naik AD, Gosian J, Moye J. Cancer as a criterion a traumatic stressor for veterans: Prevalence and correlates. Psychol Trauma. 2014;6(suppl 1):S73-S81.
21. Musuuza JS, Sherman ME, Knudsen KJ, Sweeney HA, Tyler CV, Koroukian SM. Analyzing excess mortality from cancer among individuals with mental illness. Cancer. 2013;119(13):2469-2476.
22. Zabora J, Macmurray L. The history of psychosocial screening among cancer patients. J Psychosoc Oncol. 2013:30(6):625-635.
23. Holland JC, Andersen B, Breitbart WS, et al. Distress management: Clinical practice guidelines in oncology. J Natl Compr Canc Netw. 2010:8(4):448-485.
24. Grassman DL. The Hero Within. St. Petersburg, FL: Vandamere Press; 2012.
25. Jahn AL, Herman L, Schuster J, Naik A, Moye J. Distress and resilience after cancer
in veterans. Res Hum Dev. 2012;9(3):229-247.
26. National Association of Social Workers. Social workers speak on veterans issues June 2009. National Association of Social Workers Website. http://www.naswdc.org/pressroom/2009/Social%20Work%20Veterans%20Fact%20Sheet.pdf. Accessed December 3, 2014.
27. Homeless. U.S. Department of Veterans Affairs Website. http://www.va.gov/homeless. Accessed December 3, 2014.
28. Oeffinger KC, McCabe MS. Models for delivering survivorship care. J Clin Oncol. 2006;24(32):5117-5124.
29. NCCN Guidelines. National Comprehensive Cancer Network Website. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#site. Accessed December 3, 2014.
30. American College of Surgeons, Commission on Cancer. Cancer program standards 2012, version 1.2.1: Ensuring patient-centered care. https://www.facs.org/~/media/file/quality%20programs/cancer/coc/programstandards2012.ashx. Published January 21, 2014. Accessed December 3, 2014.
31. Accreditation committee clarifications for standard 3.3 survivorship care plan. American College of Surgeons Website. https://www.facs.org/publications/newsletters/coc-source/special-source/standard33. Published September 9, 2014. Accessed December 3, 2014.