The Journal of Community and Supportive Oncology

After treatment, cancer patients transition to a survivorship phase, often with little information or support. Cancer survivors are at increased risk of recurrence, secondary cancers, comorbid conditions, and late treatment effects.^1,2 However, many remain unaware of these risks and the options for managing them³ and face numerous unmet medical, psychosocial, and informational needs that can be addressed through survivorship care programs.⁴ Anxiety may increase as they lose their treatment team’s support while attempting to reestablish their lives.² Patients need to know the long-term risks of cancer treatments, probabilities of recurrence and second cancers, effectiveness of surveillance and interventions for managing late effects and psychosocial concerns, and benefits of healthy lifestyles.²

Due to sociocultural and economic factors, Spanish-speaking Latina breast cancer survivors (SSBCS) suffer worse posttreatment health-related quality of life and more pain, fatigue, depressive symptoms, body image issues, and distress than their white counterparts.^5-7 However, they are less likely to receive necessary cancer treatment, symptom management, and surveillance. For example, compared with whites, Latina breast cancer survivors receive less guideline-adherent treatment⁸ and follow-up care, including survivorship information.^3,9 SSBCS, in particular have less access to survivorship information.¹⁰ Consequently, SSBCS are more likely to report unmet symptom management needs.¹¹

Several breast cancer survivorship program trials have included Latinas,^12,13 but their effectiveness has been demonstrated only for depressive symptoms or health worry. A comprehensive assessment of the posttreatment needs of SSBCS would provide a foundation for designing tailored survivorship interventions for this vulnerable group. This study aimed to identify the symptom management, psychosocial, and informational needs of SSBCS during the transition to survivorship from the perspectives of SSBCS and their cancer support providers and cancer physicians.

Methods

We sampled respondents within a 5-county area in Northern California to obtain multiple perspectives of the survivorship care needs of SSBCS using structured and in-depth methods: a telephone survey of SSBCS; semistructured interviews with SSBCS; semistructured interviews with cancer support providers serving SSBCS; and semistructured interviews with physicians providing cancer care for SSBCS. The study protocol was approved by the University of California San Francisco Committee on Human Research.

Sample and procedures

Structured telephone survey with SSBCS. The sample was drawn evenly from San Francisco General Hospital-University of California San Francisco primary care practices and SSBCS from a previous study who agreed to be re-contacted.¹⁴ The inclusion criteria were: completed active treatment (except adjuvant hormonal therapy) for nonmetastatic breast cancer within 10 years; living in one of the five counties; primarily Spanish-speaking; and self-identified as Latina. The exclusion criteria were: previous cancer except nonmelanoma skin cancer; terminal illness; or metastatic breast cancer. Study staff mailed potential participants a bilingual letter and information sheet, and bilingual opt-out postcard (6th grade reading level assessed by Flesch-Kincaid grade level statistic). Female bilingual-bicultural research associates conducted interviews of 20-30 minutes in Spanish after obtaining verbal consent. Participants were mailed $20. Surveys were conducted during March-November 2014.

Semistructured in-person interviews with SSBCS. Four community-based organizations (CBOs) in the targeted area providing cancer support services to Latinos agreed to recruit SSBCS for interviews. Inclusion criteria were identical to the survey. Patient navigators or support providers from CBOs contacted women by phone or in-person to invite them to an interview to assess their cancer survivorship needs. Women could choose a focus group or individual interview. With permission, names and contact information were given to study interviewers who called, explained the study, screened for eligibility, and scheduled an interview.

Recruitment was stratified by age (under or over age 50). We sampled women until saturation was achieved (no new themes emerged). Focus groups (90 minutes) were conducted at the CBOs. Individual interviews (45 minutes) were conducted in participants’ homes. Written informed consent was obtained. Participants were paid $50. Interviews were conducted during August-November, 2014, audiotaped, and transcribed.

Semistructured in-person interviews with cancer support providers and physicians. Investigators invited five cancer support providers (three patient navigators from three county hospitals, and two CBO directors of cancer psychosocial support services) and four physicians (three oncologists and one breast cancer surgeon from three county hospitals) to an in-person interview to identify SSBCS’ survivorship care needs. All agreed to participate. No further candidates were approached because saturation was achieved. We obtained written informed consent and 30-minute interviews were conducted in participants’ offices during August-October, 2014. Interviews were audiotaped and transcribed. Participants were paid $50.

Ethical approval. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.

Informed consent. Informed consent was obtained from all individual participants included in the study.

Measures

Structured telephone survey. Based on cancer survivor needs assessments,¹⁵ we assessed: physical and emotional symptoms; problems with sleep and memory/concentration; concerns about mortality, family, social isolation, intimacy, appearance; and healthy lifestyles. Items were adapted and translated into Spanish if needed, using forward/backward translation with team reconciliation. These questions used the introduction, “Now I am going to ask you if you have had any problems because of your cancer. In the past month, how much have you been bothered by …” with responses rated on a scale of 1-5 (1, Not at all; 5, A lot). For example, we asked, “In the past month, how much have you been bothered by fatigue?”

Regarding healthy lifestyles, we used the introduction, “Here are some changes women sometimes want to make after cancer. Would you like help with …?” For example, we asked, “Would you like help with getting more exercise?” We asked if they wanted help getting more exercise, eating healthier, managing stress, and doing meditation or yoga (Yes/No).

Semistructured interview guide for SSBCS. Participants were asked about their emotional and physical concerns when treatment ended, current cancer needs, symptoms or late effects, and issues related to relationships, family, employment, insurance, financial hardships, barriers to follow-up care, health behaviors, and survivorship program content. Sample questions are, “Have you had any symptoms or side effects related to your cancer or treatment?” and “What kinds of information do you feel you need now about your cancer or treatment?” A brief questionnaire assessed demographics.

Semistructured interview guide for cancer support providers and physicians. Support providers and physicians were asked about informational, psychosocial, and symptom management needs of SSBCS and recommended self-management content and formats. Sample questions are, “What kinds of information and support do you wish was available to help Spanish-speaking women take care of their health after treatment ends?” and “What do you think are the most pressing emotional needs of Spanish-speaking women after breast cancer treatment ends?” A brief questionnaire assessed demographics.

Analysis

Frequencies are reported for survey items. For questions about symptoms/concerns, we report the frequency of responding that they were bothered Somewhat/Quite a bit/A lot. For healthy lifestyles, we present the frequency answering Yes.

Verbatim semistructured interview transcripts were verified against audiotapes. Using QSR NVIVO software, transcripts were coded independently by two bilingual-bicultural investigators using a constant comparative method to generate coding categories for cancer survivorship needs.¹⁶ Coders started with themes specified by the interview guides, expanded them to represent the data, and discussed and reconciled coding discrepancies. Coding was compared by type of interview participant (survivor, support provider, or physician). Triangulation of survey and semistructured interviews occurred through team discussions to verify codes, themes, and implications for interventions.

Results

Telephone survey of SSBCS

Of the telephone survey sampling frame (N = 231), 118 individuals (51%) completed the interview, 37 (16%) were ineligible, 31 (13%) could not be reached, 22 (10%) had incorrect contact information, 19 (8%) refused to participate, and 4 (2%) were deceased. Mean age of the participants was 54.9 years (SD, 12.3); all were foreign-born, with more than half of Mexican origin; and most had less than a high-school education (Table 1). All had completed active treatment, and most (68%) were within 2 years of diagnosis.

For symptom management needs (Table 2), the most prevalent (bothersome) symptoms (reported by more than 30%, in rank order) were joint pain, sleep problems, fatigue, hot flashes, numbness/tingling of extremities, and memory. Next most prevalent (reported by 20%-30%) were vaginal dryness, dry/itchy skin, dry nose/mouth, inability to concentrate, constipation, changes in urination, and shortness of breath.

Regarding lifestyle, most of the participants said they wanted help with eating a healthier diet (74%), getting more exercise (69%), managing stress (63%), and doing yoga or meditation (55%).

Semistructured interviews

Twenty-five SSBCS completed semistructured interviews, 10 in individual interviews and 15 in one of two focus groups (one of 9 women older than 50 years; one of 6 women younger than 50). The telephone survey respondents were similar to semistructured interview respondents on all sociodemographic characteristics, but differed slightly on some clinical characteristics (Table 1). The telephone survey women had been more recently diagnosed (P < .01), were less likely to have ductal carcinoma in situ (P < .001), and more likely to have had reconstructive surgery
(P < .05).

Five cancer support providers and 4 physicians were interviewed. All support providers were Spanish-speaking Latinas with at least some college education. Cancer physicians were board certified. Two were men; two were white and two Asian; one was a breast surgeon and three were hematologists/oncologists; three spoke Spanish poorly/not at all and one spoke it fairly well.

Seven themes emerged from interviews: unmet physical symptom management needs; social support often ends when treatment ends; challenges resuming roles; sense of abandonment by health care system when treatment ends; need for formal transition from active treatment to follow-up care; fear of recurrence especially when obtaining follow-up care; and desire for information on late effects of initial treatments and side effects of hormonal treatments. We summarize results according to these themes.

Unmet physical symptom management needs. The main physical symptoms reported by survivors and physicians in interviews were arthralgia, menopausal symptoms, and neuropathy. Fatigue was reported only by survivors. Many survivors and several support providers expressed that symptoms were poorly managed and often ignored. One stated,

I have a lot of pain where I had surgery, it burns. I worry a lot about my arm because I have sacs of fluid. My doctor only says, ‘They will dissolve over the years.’ So, I don’t feel any support. (FocGrp1#6)

Survivors reported side effects of hormonal therapies, and felt that physicians downplayed these to prevent them from discontinuing medications.

Social support from family and friends often ends when treatment ends. Many survivors described a loss of support from family and friends who expected them to get back to “normal” once treatment ended. One said,

My sisters have told me to my face that there’s nothing wrong with me. So now when people ask me, I say, ‘I’m fine, thank God, I have nothing,’ even though I’m dying of pain and have all these pills to take. (Survivor#1025)

A support provider related,

The client was telling me that as she was getting closer to finishing her treatment, her husband was upset because he felt like all she was doing was focusing on the cancer. I think caregivers, family, spouses, and children out of their own sort of selfishness want this person to be well. (SuppProv#104)

A few survivors said that family bonds were strengthened after cancer and several reported lacking support because their families were in their home countries.

Challenges resuming roles, especially returning to work. Survivors, support providers, and physicians described challenges and few resources as women transition back to their normal roles. Survivors questioned their ability to return to work due to physically demanding occupations. One stated,

I would like information on how to take care of myself, how working can affect this side if I don’t take care of it. I clean houses and I need both hands. (Survivor#3012)

Survivors described how changes in memory affected daily chores and work performance. Support providers and physicians described the need for resources to aid with return to work and household responsibilities. One physician noted,

There are usually questions about how to go ahead and live their lives from that point forward. It’s a sort of reverse shock: going back to life as they know it. (Physician#004)

Support providers and physicians mentioned that women needed help with resuming intimate partner relations.

Sense of abandonment by health care system once active treatment ends. Survivors, support providers, and physicians reported a loss of support and sense of abandonment by the patients’ oncology team at the end of active treatment. One survivor stated,

Once they tell you to stop the pills, ‘You’re cured, there’s nothing wrong with you,’ the truth is that one feels, ‘Now what do I do? I have no one to help me.’ I felt very abandoned. (FocGrp1#5)

A provider said,

The support system falls apart once women complete treatment. They lose their entire support system at the medical level. They no longer have nurses checking in about symptoms and addressing anything that’s come up. They won’t have access to doctors unless they’re doing their screening. (SuppProv#101)

An oncologist, noting that this loss of support occurs when women face pressures of transitioning back to work or family obligations, commented,

So here’s a woman whose marriage is in turmoil, whose husband may even have left her during this, and now her clinic is leaving her and she’s on her own … that must be scary as hell because there’s nobody out there to support her. (Physician#002)

Need for formal transition from active treatment to follow-up care. Two themes emerged about transitioning from active treatment: transferring care from oncologists to primary care physicians (PCP); and issues of follow-up care (with oncologists or PCPs). Survivors felt lost in transitioning from specialty to primary care, or expressed apprehension seeing a PCP rather than a cancer specialist. One stated,

I have my doctor but she is not a specialist. She does what I tell her to and orders a mammogram every year. But, I don’t go to the oncologist anymore, and so I worry. With the specialists, I feel protected. (FocGrp1#5)

Physicians acknowledged the lack of a formal transition to primary care such as a survivorship care program.

Follow-up care issues were common. Physicians stressed that women needed to know how often to return for follow-up once active treatment ends and about recommended examinations and tests, especially when receiving hormonal therapy. Physicians indicated the need for patient education materials specific to patients’ treatments, for example, elevated risk of heart disease with certain chemotherapy agents. An oncologist expressed concern that PCPs are not prepared adequately about late effects and hormonal treatment side effects, and suggested providing summary notes for PCPs detailing these.

Survivors identified several barriers to follow-up care: lacking information on which symptoms merited a call to physicians; financial burden/limited health insurance; lacking appointment reminders; fear of examinations; and limited English proficiency. A survivor stated,

If you have insurance, you can make your appointment, see the doctor, and have your mammogram. I stopped taking my pills because I didn’t have insurance. I tried to get them again but they told me they would cost me a thousand dollars. (FocGrp1#5)

One oncologist suggested scheduling a follow-up appointment before patients leave treatment and calling patients who miss appointments.

Facilitators of regular follow-up care identified by survivors were physicians informing them about symptom monitoring and reporting, having a clinic contact person/navigator, being given a follow-up appointment, being assertive about one’s care, and physicians’ reinforcement of adherence to hormonal treatment and follow-up. According to support providers, a key facilitator was having a clinic contact person/navigator. Once treatment ended, support providers often served as the liaison between the patient and the physician, making them the first point of contact for symptom reporting.

Fear of recurrence especially when obtaining follow-up care. Fear of recurrence dominated survivor interviews. This fear was heightened at the time of follow-up examinations or when they experienced unusual pain. A survivor commented,

Every time I’m due for my mammogram, I can’t sleep, worrying. I lose sleep until I get the letter with my results. Then I feel at peace again. (FocGrp1#9)

Support providers discussed the need to provide reassurance to SSBCS to help them cope with fears of recurrence. Physicians expressed challenges in allaying fears of recurrence among SSBCS, requiring a lot of time when recommending follow-up mammograms.

Desire for information on late effects of treatments and side effects of hormonal therapies. All survivors expressed receiving insufficient information on potential symptoms and side effects. One stated,

Doctors only have five minutes. There has never been someone who gave me guidance like, ‘From now on you have to do this or you might get these symptoms now or in the future. (Survivor#6019)

They indicated uncertainty about what symptoms were “normal” and when symptoms merited a call to the physician. Several survivors reported being unaware that fatigue, arthralgia and neuropathy were side effects of breast cancer treatments until they reported these to physicians.

Physicians stressed the importance of women knowing about the elevated risk of future cancers, symptoms of recurrence, and seeking follow-up care if they experience symptoms that are out of the ordinary. Support providers felt that it was important to provide SSBCS with information on signs of recurrence and when to report these. However, providers expressed concern that giving women too much information might elevate their anxiety. A physician suggested,

It’s probably better to have a symptom list that’s short and relevant for the most common and catastrophic things, same thing with side effects … short to avoid overwhelming the patient. (Physician#001)

Hormonal treatments were of special concern. Survivors expressed a need for information on hormonal treatments and support providers stressed that this information is needed in simple Spanish. Several survivors indicated they stopped taking hormonal treatments due to side effects. One woman experienced severe headaches and heart palpitations, stopped taking the hormonal medication, felt better, and did not inform her physician until her next appointment. A support provider stated,

What I hear from a lot of women is that if side effects are too uncomfortable, they just stop it (hormonal treatment) without saying anything to the doctor. So more information about why they have to take it and that there is a good chance of recurrence is really important. (SuppProv#101)

Likewise, physicians indicated that SSBCS’ lack of information on hormonal treatments often resulted in nonadherence, emphasizing the need to reinforce adherence to prevent recurrence.

Conceptual framework of interventions

Based on triangulation of survey and interview results, we compiled a conceptual framework that includes needs identified, suggested components of a survivorship care intervention to address these needs, potential mediators by which such interventions could improve outcomes, and relevant outcomes (Figure). Survivorship care needs fell into four categories: symptom management, psychosocial, sense of abandonment by health care team, and healthy lifestyles. Survivorship care programs would provide skills training in symptom and stress management, and communicating with providers, family, friends, and coworkers. Mediators include increased self-efficacy, knowledge and perceived social support, ultimately leading to reduced distress (anxiety and depressive symptoms) and stress, and improved health-related quality of life.

Conclusions

Our study aimed to identify the most critical needs of SSBCS in the posttreatment survivorship phase to facilitate the design of survivorship interventions for this vulnerable group. SSBCS, cancer support providers, and cancer physicians reported substantial symptom management, psychosocial, and informational needs among this population. Results from surveys and open-ended interviews were remarkably consistent. Survivors, physicians, and support providers viewed transition out of active treatment as a time of increased psychosocial need and heightened vulnerability.

Our findings are consistent with needs assessments conducted in other breast cancer survivors. Similar to a study of rural white women with breast cancer, fear of recurrence was among the most common psychosocial concerns.¹⁷ Results of two studies that included white, African American and Latina breast cancer survivors were consistent with ours in finding that pain and fatigue were among the most persistent symptoms; in both studies, Latinas were more likely to report pain and a higher number of symptoms.^7,18 The prevalence of sleep problems in our sample was identical to that reported in a sample of African American breast cancer survivors.¹⁹ Our findings of a high need for symptom management information and support, social support from family and friends, and self-management resources were similar to studies of other vulnerable breast cancer survivors.^18,20

Our results suggest that it is critical for health care professionals to provide assistance with managing side effects and information to alleviate fears, and reinforce behaviors of symptom monitoring and reporting, and adherence to follow-up care and hormonal therapies. Yet this information is not being conveyed effectively and is complicated by the need to balance women’s need for information with minimizing anxiety when providing such information.

A limitation of our study is that most of our sample was Mexican origin and may not reflect experiences of Spanish-speaking Latinas of other national origin groups or outside of Northern California. Another limitation is the lack of an English-speaking comparison group, which would have permitted the identification of similarities and differences across language groups. Finally, we did not interview radiation oncologists who may have had opinions that are not represented here.

Survivorship care programs offer great promise for meeting patients’ informational and symptom management needs and improving well-being and communication with clinicians.²¹ Due to limited access to survivorship care information, financial hardships, and pressures from their families to resume their social roles, concerted efforts are needed to develop appropriate survivorship programs for SSBCS.²² Unique language, cultural and socioeconomic factors of Spanish-speaking Latinas require tailoring of cancer survivorship programs to best meet their needs.²³ These programs need to provide psychosocial stress and symptom management assistance, simple information on recommended follow-up care, and healthy lifestyle and role reintegration strategies that account for their unique sociocultural contexts.

After treatment, cancer patients transition to a survivorship phase, often with little information or support. Cancer survivors are at increased risk of recurrence, secondary cancers, comorbid conditions, and late treatment effects.^1,2 However, many remain unaware of these risks and the options for managing them³ and face numerous unmet medical, psychosocial, and informational needs that can be addressed through survivorship care programs.⁴ Anxiety may increase as they lose their treatment team’s support while attempting to reestablish their lives.² Patients need to know the long-term risks of cancer treatments, probabilities of recurrence and second cancers, effectiveness of surveillance and interventions for managing late effects and psychosocial concerns, and benefits of healthy lifestyles.²

Due to sociocultural and economic factors, Spanish-speaking Latina breast cancer survivors (SSBCS) suffer worse posttreatment health-related quality of life and more pain, fatigue, depressive symptoms, body image issues, and distress than their white counterparts.^5-7 However, they are less likely to receive necessary cancer treatment, symptom management, and surveillance. For example, compared with whites, Latina breast cancer survivors receive less guideline-adherent treatment⁸ and follow-up care, including survivorship information.^3,9 SSBCS, in particular have less access to survivorship information.¹⁰ Consequently, SSBCS are more likely to report unmet symptom management needs.¹¹

Several breast cancer survivorship program trials have included Latinas,^12,13 but their effectiveness has been demonstrated only for depressive symptoms or health worry. A comprehensive assessment of the posttreatment needs of SSBCS would provide a foundation for designing tailored survivorship interventions for this vulnerable group. This study aimed to identify the symptom management, psychosocial, and informational needs of SSBCS during the transition to survivorship from the perspectives of SSBCS and their cancer support providers and cancer physicians.

Methods

We sampled respondents within a 5-county area in Northern California to obtain multiple perspectives of the survivorship care needs of SSBCS using structured and in-depth methods: a telephone survey of SSBCS; semistructured interviews with SSBCS; semistructured interviews with cancer support providers serving SSBCS; and semistructured interviews with physicians providing cancer care for SSBCS. The study protocol was approved by the University of California San Francisco Committee on Human Research.

Sample and procedures

Structured telephone survey with SSBCS. The sample was drawn evenly from San Francisco General Hospital-University of California San Francisco primary care practices and SSBCS from a previous study who agreed to be re-contacted.¹⁴ The inclusion criteria were: completed active treatment (except adjuvant hormonal therapy) for nonmetastatic breast cancer within 10 years; living in one of the five counties; primarily Spanish-speaking; and self-identified as Latina. The exclusion criteria were: previous cancer except nonmelanoma skin cancer; terminal illness; or metastatic breast cancer. Study staff mailed potential participants a bilingual letter and information sheet, and bilingual opt-out postcard (6th grade reading level assessed by Flesch-Kincaid grade level statistic). Female bilingual-bicultural research associates conducted interviews of 20-30 minutes in Spanish after obtaining verbal consent. Participants were mailed $20. Surveys were conducted during March-November 2014.

Semistructured in-person interviews with SSBCS. Four community-based organizations (CBOs) in the targeted area providing cancer support services to Latinos agreed to recruit SSBCS for interviews. Inclusion criteria were identical to the survey. Patient navigators or support providers from CBOs contacted women by phone or in-person to invite them to an interview to assess their cancer survivorship needs. Women could choose a focus group or individual interview. With permission, names and contact information were given to study interviewers who called, explained the study, screened for eligibility, and scheduled an interview.

Recruitment was stratified by age (under or over age 50). We sampled women until saturation was achieved (no new themes emerged). Focus groups (90 minutes) were conducted at the CBOs. Individual interviews (45 minutes) were conducted in participants’ homes. Written informed consent was obtained. Participants were paid $50. Interviews were conducted during August-November, 2014, audiotaped, and transcribed.

Semistructured in-person interviews with cancer support providers and physicians. Investigators invited five cancer support providers (three patient navigators from three county hospitals, and two CBO directors of cancer psychosocial support services) and four physicians (three oncologists and one breast cancer surgeon from three county hospitals) to an in-person interview to identify SSBCS’ survivorship care needs. All agreed to participate. No further candidates were approached because saturation was achieved. We obtained written informed consent and 30-minute interviews were conducted in participants’ offices during August-October, 2014. Interviews were audiotaped and transcribed. Participants were paid $50.

Ethical approval. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.

Informed consent. Informed consent was obtained from all individual participants included in the study.

Measures

Structured telephone survey. Based on cancer survivor needs assessments,¹⁵ we assessed: physical and emotional symptoms; problems with sleep and memory/concentration; concerns about mortality, family, social isolation, intimacy, appearance; and healthy lifestyles. Items were adapted and translated into Spanish if needed, using forward/backward translation with team reconciliation. These questions used the introduction, “Now I am going to ask you if you have had any problems because of your cancer. In the past month, how much have you been bothered by …” with responses rated on a scale of 1-5 (1, Not at all; 5, A lot). For example, we asked, “In the past month, how much have you been bothered by fatigue?”

Regarding healthy lifestyles, we used the introduction, “Here are some changes women sometimes want to make after cancer. Would you like help with …?” For example, we asked, “Would you like help with getting more exercise?” We asked if they wanted help getting more exercise, eating healthier, managing stress, and doing meditation or yoga (Yes/No).

Semistructured interview guide for SSBCS. Participants were asked about their emotional and physical concerns when treatment ended, current cancer needs, symptoms or late effects, and issues related to relationships, family, employment, insurance, financial hardships, barriers to follow-up care, health behaviors, and survivorship program content. Sample questions are, “Have you had any symptoms or side effects related to your cancer or treatment?” and “What kinds of information do you feel you need now about your cancer or treatment?” A brief questionnaire assessed demographics.

Semistructured interview guide for cancer support providers and physicians. Support providers and physicians were asked about informational, psychosocial, and symptom management needs of SSBCS and recommended self-management content and formats. Sample questions are, “What kinds of information and support do you wish was available to help Spanish-speaking women take care of their health after treatment ends?” and “What do you think are the most pressing emotional needs of Spanish-speaking women after breast cancer treatment ends?” A brief questionnaire assessed demographics.

Analysis

Frequencies are reported for survey items. For questions about symptoms/concerns, we report the frequency of responding that they were bothered Somewhat/Quite a bit/A lot. For healthy lifestyles, we present the frequency answering Yes.

Verbatim semistructured interview transcripts were verified against audiotapes. Using QSR NVIVO software, transcripts were coded independently by two bilingual-bicultural investigators using a constant comparative method to generate coding categories for cancer survivorship needs.¹⁶ Coders started with themes specified by the interview guides, expanded them to represent the data, and discussed and reconciled coding discrepancies. Coding was compared by type of interview participant (survivor, support provider, or physician). Triangulation of survey and semistructured interviews occurred through team discussions to verify codes, themes, and implications for interventions.

Results

Telephone survey of SSBCS

Of the telephone survey sampling frame (N = 231), 118 individuals (51%) completed the interview, 37 (16%) were ineligible, 31 (13%) could not be reached, 22 (10%) had incorrect contact information, 19 (8%) refused to participate, and 4 (2%) were deceased. Mean age of the participants was 54.9 years (SD, 12.3); all were foreign-born, with more than half of Mexican origin; and most had less than a high-school education (Table 1). All had completed active treatment, and most (68%) were within 2 years of diagnosis.

For symptom management needs (Table 2), the most prevalent (bothersome) symptoms (reported by more than 30%, in rank order) were joint pain, sleep problems, fatigue, hot flashes, numbness/tingling of extremities, and memory. Next most prevalent (reported by 20%-30%) were vaginal dryness, dry/itchy skin, dry nose/mouth, inability to concentrate, constipation, changes in urination, and shortness of breath.

Regarding lifestyle, most of the participants said they wanted help with eating a healthier diet (74%), getting more exercise (69%), managing stress (63%), and doing yoga or meditation (55%).

Semistructured interviews

Twenty-five SSBCS completed semistructured interviews, 10 in individual interviews and 15 in one of two focus groups (one of 9 women older than 50 years; one of 6 women younger than 50). The telephone survey respondents were similar to semistructured interview respondents on all sociodemographic characteristics, but differed slightly on some clinical characteristics (Table 1). The telephone survey women had been more recently diagnosed (P < .01), were less likely to have ductal carcinoma in situ (P < .001), and more likely to have had reconstructive surgery
(P < .05).

Five cancer support providers and 4 physicians were interviewed. All support providers were Spanish-speaking Latinas with at least some college education. Cancer physicians were board certified. Two were men; two were white and two Asian; one was a breast surgeon and three were hematologists/oncologists; three spoke Spanish poorly/not at all and one spoke it fairly well.

Seven themes emerged from interviews: unmet physical symptom management needs; social support often ends when treatment ends; challenges resuming roles; sense of abandonment by health care system when treatment ends; need for formal transition from active treatment to follow-up care; fear of recurrence especially when obtaining follow-up care; and desire for information on late effects of initial treatments and side effects of hormonal treatments. We summarize results according to these themes.

Unmet physical symptom management needs. The main physical symptoms reported by survivors and physicians in interviews were arthralgia, menopausal symptoms, and neuropathy. Fatigue was reported only by survivors. Many survivors and several support providers expressed that symptoms were poorly managed and often ignored. One stated,

I have a lot of pain where I had surgery, it burns. I worry a lot about my arm because I have sacs of fluid. My doctor only says, ‘They will dissolve over the years.’ So, I don’t feel any support. (FocGrp1#6)

Survivors reported side effects of hormonal therapies, and felt that physicians downplayed these to prevent them from discontinuing medications.

Social support from family and friends often ends when treatment ends. Many survivors described a loss of support from family and friends who expected them to get back to “normal” once treatment ended. One said,

My sisters have told me to my face that there’s nothing wrong with me. So now when people ask me, I say, ‘I’m fine, thank God, I have nothing,’ even though I’m dying of pain and have all these pills to take. (Survivor#1025)

A support provider related,

The client was telling me that as she was getting closer to finishing her treatment, her husband was upset because he felt like all she was doing was focusing on the cancer. I think caregivers, family, spouses, and children out of their own sort of selfishness want this person to be well. (SuppProv#104)

A few survivors said that family bonds were strengthened after cancer and several reported lacking support because their families were in their home countries.

Challenges resuming roles, especially returning to work. Survivors, support providers, and physicians described challenges and few resources as women transition back to their normal roles. Survivors questioned their ability to return to work due to physically demanding occupations. One stated,

I would like information on how to take care of myself, how working can affect this side if I don’t take care of it. I clean houses and I need both hands. (Survivor#3012)

Survivors described how changes in memory affected daily chores and work performance. Support providers and physicians described the need for resources to aid with return to work and household responsibilities. One physician noted,

There are usually questions about how to go ahead and live their lives from that point forward. It’s a sort of reverse shock: going back to life as they know it. (Physician#004)

Support providers and physicians mentioned that women needed help with resuming intimate partner relations.

Sense of abandonment by health care system once active treatment ends. Survivors, support providers, and physicians reported a loss of support and sense of abandonment by the patients’ oncology team at the end of active treatment. One survivor stated,

Once they tell you to stop the pills, ‘You’re cured, there’s nothing wrong with you,’ the truth is that one feels, ‘Now what do I do? I have no one to help me.’ I felt very abandoned. (FocGrp1#5)

A provider said,

The support system falls apart once women complete treatment. They lose their entire support system at the medical level. They no longer have nurses checking in about symptoms and addressing anything that’s come up. They won’t have access to doctors unless they’re doing their screening. (SuppProv#101)

An oncologist, noting that this loss of support occurs when women face pressures of transitioning back to work or family obligations, commented,

So here’s a woman whose marriage is in turmoil, whose husband may even have left her during this, and now her clinic is leaving her and she’s on her own … that must be scary as hell because there’s nobody out there to support her. (Physician#002)

Need for formal transition from active treatment to follow-up care. Two themes emerged about transitioning from active treatment: transferring care from oncologists to primary care physicians (PCP); and issues of follow-up care (with oncologists or PCPs). Survivors felt lost in transitioning from specialty to primary care, or expressed apprehension seeing a PCP rather than a cancer specialist. One stated,

I have my doctor but she is not a specialist. She does what I tell her to and orders a mammogram every year. But, I don’t go to the oncologist anymore, and so I worry. With the specialists, I feel protected. (FocGrp1#5)

Physicians acknowledged the lack of a formal transition to primary care such as a survivorship care program.

Follow-up care issues were common. Physicians stressed that women needed to know how often to return for follow-up once active treatment ends and about recommended examinations and tests, especially when receiving hormonal therapy. Physicians indicated the need for patient education materials specific to patients’ treatments, for example, elevated risk of heart disease with certain chemotherapy agents. An oncologist expressed concern that PCPs are not prepared adequately about late effects and hormonal treatment side effects, and suggested providing summary notes for PCPs detailing these.

Survivors identified several barriers to follow-up care: lacking information on which symptoms merited a call to physicians; financial burden/limited health insurance; lacking appointment reminders; fear of examinations; and limited English proficiency. A survivor stated,

If you have insurance, you can make your appointment, see the doctor, and have your mammogram. I stopped taking my pills because I didn’t have insurance. I tried to get them again but they told me they would cost me a thousand dollars. (FocGrp1#5)

One oncologist suggested scheduling a follow-up appointment before patients leave treatment and calling patients who miss appointments.

Facilitators of regular follow-up care identified by survivors were physicians informing them about symptom monitoring and reporting, having a clinic contact person/navigator, being given a follow-up appointment, being assertive about one’s care, and physicians’ reinforcement of adherence to hormonal treatment and follow-up. According to support providers, a key facilitator was having a clinic contact person/navigator. Once treatment ended, support providers often served as the liaison between the patient and the physician, making them the first point of contact for symptom reporting.

Fear of recurrence especially when obtaining follow-up care. Fear of recurrence dominated survivor interviews. This fear was heightened at the time of follow-up examinations or when they experienced unusual pain. A survivor commented,

Every time I’m due for my mammogram, I can’t sleep, worrying. I lose sleep until I get the letter with my results. Then I feel at peace again. (FocGrp1#9)

Support providers discussed the need to provide reassurance to SSBCS to help them cope with fears of recurrence. Physicians expressed challenges in allaying fears of recurrence among SSBCS, requiring a lot of time when recommending follow-up mammograms.

Desire for information on late effects of treatments and side effects of hormonal therapies. All survivors expressed receiving insufficient information on potential symptoms and side effects. One stated,

Doctors only have five minutes. There has never been someone who gave me guidance like, ‘From now on you have to do this or you might get these symptoms now or in the future. (Survivor#6019)

They indicated uncertainty about what symptoms were “normal” and when symptoms merited a call to the physician. Several survivors reported being unaware that fatigue, arthralgia and neuropathy were side effects of breast cancer treatments until they reported these to physicians.

Physicians stressed the importance of women knowing about the elevated risk of future cancers, symptoms of recurrence, and seeking follow-up care if they experience symptoms that are out of the ordinary. Support providers felt that it was important to provide SSBCS with information on signs of recurrence and when to report these. However, providers expressed concern that giving women too much information might elevate their anxiety. A physician suggested,

It’s probably better to have a symptom list that’s short and relevant for the most common and catastrophic things, same thing with side effects … short to avoid overwhelming the patient. (Physician#001)

Hormonal treatments were of special concern. Survivors expressed a need for information on hormonal treatments and support providers stressed that this information is needed in simple Spanish. Several survivors indicated they stopped taking hormonal treatments due to side effects. One woman experienced severe headaches and heart palpitations, stopped taking the hormonal medication, felt better, and did not inform her physician until her next appointment. A support provider stated,

What I hear from a lot of women is that if side effects are too uncomfortable, they just stop it (hormonal treatment) without saying anything to the doctor. So more information about why they have to take it and that there is a good chance of recurrence is really important. (SuppProv#101)

Likewise, physicians indicated that SSBCS’ lack of information on hormonal treatments often resulted in nonadherence, emphasizing the need to reinforce adherence to prevent recurrence.

Conceptual framework of interventions

Based on triangulation of survey and interview results, we compiled a conceptual framework that includes needs identified, suggested components of a survivorship care intervention to address these needs, potential mediators by which such interventions could improve outcomes, and relevant outcomes (Figure). Survivorship care needs fell into four categories: symptom management, psychosocial, sense of abandonment by health care team, and healthy lifestyles. Survivorship care programs would provide skills training in symptom and stress management, and communicating with providers, family, friends, and coworkers. Mediators include increased self-efficacy, knowledge and perceived social support, ultimately leading to reduced distress (anxiety and depressive symptoms) and stress, and improved health-related quality of life.

Conclusions

Our study aimed to identify the most critical needs of SSBCS in the posttreatment survivorship phase to facilitate the design of survivorship interventions for this vulnerable group. SSBCS, cancer support providers, and cancer physicians reported substantial symptom management, psychosocial, and informational needs among this population. Results from surveys and open-ended interviews were remarkably consistent. Survivors, physicians, and support providers viewed transition out of active treatment as a time of increased psychosocial need and heightened vulnerability.

Our findings are consistent with needs assessments conducted in other breast cancer survivors. Similar to a study of rural white women with breast cancer, fear of recurrence was among the most common psychosocial concerns.¹⁷ Results of two studies that included white, African American and Latina breast cancer survivors were consistent with ours in finding that pain and fatigue were among the most persistent symptoms; in both studies, Latinas were more likely to report pain and a higher number of symptoms.^7,18 The prevalence of sleep problems in our sample was identical to that reported in a sample of African American breast cancer survivors.¹⁹ Our findings of a high need for symptom management information and support, social support from family and friends, and self-management resources were similar to studies of other vulnerable breast cancer survivors.^18,20

Our results suggest that it is critical for health care professionals to provide assistance with managing side effects and information to alleviate fears, and reinforce behaviors of symptom monitoring and reporting, and adherence to follow-up care and hormonal therapies. Yet this information is not being conveyed effectively and is complicated by the need to balance women’s need for information with minimizing anxiety when providing such information.

A limitation of our study is that most of our sample was Mexican origin and may not reflect experiences of Spanish-speaking Latinas of other national origin groups or outside of Northern California. Another limitation is the lack of an English-speaking comparison group, which would have permitted the identification of similarities and differences across language groups. Finally, we did not interview radiation oncologists who may have had opinions that are not represented here.

Survivorship care programs offer great promise for meeting patients’ informational and symptom management needs and improving well-being and communication with clinicians.²¹ Due to limited access to survivorship care information, financial hardships, and pressures from their families to resume their social roles, concerted efforts are needed to develop appropriate survivorship programs for SSBCS.²² Unique language, cultural and socioeconomic factors of Spanish-speaking Latinas require tailoring of cancer survivorship programs to best meet their needs.²³ These programs need to provide psychosocial stress and symptom management assistance, simple information on recommended follow-up care, and healthy lifestyle and role reintegration strategies that account for their unique sociocultural contexts.

After treatment, cancer patients transition to a survivorship phase, often with little information or support. Cancer survivors are at increased risk of recurrence, secondary cancers, comorbid conditions, and late treatment effects.^1,2 However, many remain unaware of these risks and the options for managing them³ and face numerous unmet medical, psychosocial, and informational needs that can be addressed through survivorship care programs.⁴ Anxiety may increase as they lose their treatment team’s support while attempting to reestablish their lives.² Patients need to know the long-term risks of cancer treatments, probabilities of recurrence and second cancers, effectiveness of surveillance and interventions for managing late effects and psychosocial concerns, and benefits of healthy lifestyles.²

Due to sociocultural and economic factors, Spanish-speaking Latina breast cancer survivors (SSBCS) suffer worse posttreatment health-related quality of life and more pain, fatigue, depressive symptoms, body image issues, and distress than their white counterparts.^5-7 However, they are less likely to receive necessary cancer treatment, symptom management, and surveillance. For example, compared with whites, Latina breast cancer survivors receive less guideline-adherent treatment⁸ and follow-up care, including survivorship information.^3,9 SSBCS, in particular have less access to survivorship information.¹⁰ Consequently, SSBCS are more likely to report unmet symptom management needs.¹¹

Several breast cancer survivorship program trials have included Latinas,^12,13 but their effectiveness has been demonstrated only for depressive symptoms or health worry. A comprehensive assessment of the posttreatment needs of SSBCS would provide a foundation for designing tailored survivorship interventions for this vulnerable group. This study aimed to identify the symptom management, psychosocial, and informational needs of SSBCS during the transition to survivorship from the perspectives of SSBCS and their cancer support providers and cancer physicians.

Methods

We sampled respondents within a 5-county area in Northern California to obtain multiple perspectives of the survivorship care needs of SSBCS using structured and in-depth methods: a telephone survey of SSBCS; semistructured interviews with SSBCS; semistructured interviews with cancer support providers serving SSBCS; and semistructured interviews with physicians providing cancer care for SSBCS. The study protocol was approved by the University of California San Francisco Committee on Human Research.

Sample and procedures

Structured telephone survey with SSBCS. The sample was drawn evenly from San Francisco General Hospital-University of California San Francisco primary care practices and SSBCS from a previous study who agreed to be re-contacted.¹⁴ The inclusion criteria were: completed active treatment (except adjuvant hormonal therapy) for nonmetastatic breast cancer within 10 years; living in one of the five counties; primarily Spanish-speaking; and self-identified as Latina. The exclusion criteria were: previous cancer except nonmelanoma skin cancer; terminal illness; or metastatic breast cancer. Study staff mailed potential participants a bilingual letter and information sheet, and bilingual opt-out postcard (6th grade reading level assessed by Flesch-Kincaid grade level statistic). Female bilingual-bicultural research associates conducted interviews of 20-30 minutes in Spanish after obtaining verbal consent. Participants were mailed $20. Surveys were conducted during March-November 2014.

Semistructured in-person interviews with SSBCS. Four community-based organizations (CBOs) in the targeted area providing cancer support services to Latinos agreed to recruit SSBCS for interviews. Inclusion criteria were identical to the survey. Patient navigators or support providers from CBOs contacted women by phone or in-person to invite them to an interview to assess their cancer survivorship needs. Women could choose a focus group or individual interview. With permission, names and contact information were given to study interviewers who called, explained the study, screened for eligibility, and scheduled an interview.

Recruitment was stratified by age (under or over age 50). We sampled women until saturation was achieved (no new themes emerged). Focus groups (90 minutes) were conducted at the CBOs. Individual interviews (45 minutes) were conducted in participants’ homes. Written informed consent was obtained. Participants were paid $50. Interviews were conducted during August-November, 2014, audiotaped, and transcribed.

Semistructured in-person interviews with cancer support providers and physicians. Investigators invited five cancer support providers (three patient navigators from three county hospitals, and two CBO directors of cancer psychosocial support services) and four physicians (three oncologists and one breast cancer surgeon from three county hospitals) to an in-person interview to identify SSBCS’ survivorship care needs. All agreed to participate. No further candidates were approached because saturation was achieved. We obtained written informed consent and 30-minute interviews were conducted in participants’ offices during August-October, 2014. Interviews were audiotaped and transcribed. Participants were paid $50.

Ethical approval. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.

Informed consent. Informed consent was obtained from all individual participants included in the study.

Measures

Structured telephone survey. Based on cancer survivor needs assessments,¹⁵ we assessed: physical and emotional symptoms; problems with sleep and memory/concentration; concerns about mortality, family, social isolation, intimacy, appearance; and healthy lifestyles. Items were adapted and translated into Spanish if needed, using forward/backward translation with team reconciliation. These questions used the introduction, “Now I am going to ask you if you have had any problems because of your cancer. In the past month, how much have you been bothered by …” with responses rated on a scale of 1-5 (1, Not at all; 5, A lot). For example, we asked, “In the past month, how much have you been bothered by fatigue?”

Regarding healthy lifestyles, we used the introduction, “Here are some changes women sometimes want to make after cancer. Would you like help with …?” For example, we asked, “Would you like help with getting more exercise?” We asked if they wanted help getting more exercise, eating healthier, managing stress, and doing meditation or yoga (Yes/No).

Semistructured interview guide for SSBCS. Participants were asked about their emotional and physical concerns when treatment ended, current cancer needs, symptoms or late effects, and issues related to relationships, family, employment, insurance, financial hardships, barriers to follow-up care, health behaviors, and survivorship program content. Sample questions are, “Have you had any symptoms or side effects related to your cancer or treatment?” and “What kinds of information do you feel you need now about your cancer or treatment?” A brief questionnaire assessed demographics.

Semistructured interview guide for cancer support providers and physicians. Support providers and physicians were asked about informational, psychosocial, and symptom management needs of SSBCS and recommended self-management content and formats. Sample questions are, “What kinds of information and support do you wish was available to help Spanish-speaking women take care of their health after treatment ends?” and “What do you think are the most pressing emotional needs of Spanish-speaking women after breast cancer treatment ends?” A brief questionnaire assessed demographics.

Analysis

Frequencies are reported for survey items. For questions about symptoms/concerns, we report the frequency of responding that they were bothered Somewhat/Quite a bit/A lot. For healthy lifestyles, we present the frequency answering Yes.

Verbatim semistructured interview transcripts were verified against audiotapes. Using QSR NVIVO software, transcripts were coded independently by two bilingual-bicultural investigators using a constant comparative method to generate coding categories for cancer survivorship needs.¹⁶ Coders started with themes specified by the interview guides, expanded them to represent the data, and discussed and reconciled coding discrepancies. Coding was compared by type of interview participant (survivor, support provider, or physician). Triangulation of survey and semistructured interviews occurred through team discussions to verify codes, themes, and implications for interventions.

Results

Telephone survey of SSBCS

Of the telephone survey sampling frame (N = 231), 118 individuals (51%) completed the interview, 37 (16%) were ineligible, 31 (13%) could not be reached, 22 (10%) had incorrect contact information, 19 (8%) refused to participate, and 4 (2%) were deceased. Mean age of the participants was 54.9 years (SD, 12.3); all were foreign-born, with more than half of Mexican origin; and most had less than a high-school education (Table 1). All had completed active treatment, and most (68%) were within 2 years of diagnosis.

For symptom management needs (Table 2), the most prevalent (bothersome) symptoms (reported by more than 30%, in rank order) were joint pain, sleep problems, fatigue, hot flashes, numbness/tingling of extremities, and memory. Next most prevalent (reported by 20%-30%) were vaginal dryness, dry/itchy skin, dry nose/mouth, inability to concentrate, constipation, changes in urination, and shortness of breath.

Regarding lifestyle, most of the participants said they wanted help with eating a healthier diet (74%), getting more exercise (69%), managing stress (63%), and doing yoga or meditation (55%).

Semistructured interviews

Twenty-five SSBCS completed semistructured interviews, 10 in individual interviews and 15 in one of two focus groups (one of 9 women older than 50 years; one of 6 women younger than 50). The telephone survey respondents were similar to semistructured interview respondents on all sociodemographic characteristics, but differed slightly on some clinical characteristics (Table 1). The telephone survey women had been more recently diagnosed (P < .01), were less likely to have ductal carcinoma in situ (P < .001), and more likely to have had reconstructive surgery
(P < .05).

Five cancer support providers and 4 physicians were interviewed. All support providers were Spanish-speaking Latinas with at least some college education. Cancer physicians were board certified. Two were men; two were white and two Asian; one was a breast surgeon and three were hematologists/oncologists; three spoke Spanish poorly/not at all and one spoke it fairly well.

Seven themes emerged from interviews: unmet physical symptom management needs; social support often ends when treatment ends; challenges resuming roles; sense of abandonment by health care system when treatment ends; need for formal transition from active treatment to follow-up care; fear of recurrence especially when obtaining follow-up care; and desire for information on late effects of initial treatments and side effects of hormonal treatments. We summarize results according to these themes.

Unmet physical symptom management needs. The main physical symptoms reported by survivors and physicians in interviews were arthralgia, menopausal symptoms, and neuropathy. Fatigue was reported only by survivors. Many survivors and several support providers expressed that symptoms were poorly managed and often ignored. One stated,

I have a lot of pain where I had surgery, it burns. I worry a lot about my arm because I have sacs of fluid. My doctor only says, ‘They will dissolve over the years.’ So, I don’t feel any support. (FocGrp1#6)

Survivors reported side effects of hormonal therapies, and felt that physicians downplayed these to prevent them from discontinuing medications.

Social support from family and friends often ends when treatment ends. Many survivors described a loss of support from family and friends who expected them to get back to “normal” once treatment ended. One said,

My sisters have told me to my face that there’s nothing wrong with me. So now when people ask me, I say, ‘I’m fine, thank God, I have nothing,’ even though I’m dying of pain and have all these pills to take. (Survivor#1025)

A support provider related,

The client was telling me that as she was getting closer to finishing her treatment, her husband was upset because he felt like all she was doing was focusing on the cancer. I think caregivers, family, spouses, and children out of their own sort of selfishness want this person to be well. (SuppProv#104)

A few survivors said that family bonds were strengthened after cancer and several reported lacking support because their families were in their home countries.

Challenges resuming roles, especially returning to work. Survivors, support providers, and physicians described challenges and few resources as women transition back to their normal roles. Survivors questioned their ability to return to work due to physically demanding occupations. One stated,

I would like information on how to take care of myself, how working can affect this side if I don’t take care of it. I clean houses and I need both hands. (Survivor#3012)

Survivors described how changes in memory affected daily chores and work performance. Support providers and physicians described the need for resources to aid with return to work and household responsibilities. One physician noted,

There are usually questions about how to go ahead and live their lives from that point forward. It’s a sort of reverse shock: going back to life as they know it. (Physician#004)

Support providers and physicians mentioned that women needed help with resuming intimate partner relations.

Sense of abandonment by health care system once active treatment ends. Survivors, support providers, and physicians reported a loss of support and sense of abandonment by the patients’ oncology team at the end of active treatment. One survivor stated,

Once they tell you to stop the pills, ‘You’re cured, there’s nothing wrong with you,’ the truth is that one feels, ‘Now what do I do? I have no one to help me.’ I felt very abandoned. (FocGrp1#5)

A provider said,

The support system falls apart once women complete treatment. They lose their entire support system at the medical level. They no longer have nurses checking in about symptoms and addressing anything that’s come up. They won’t have access to doctors unless they’re doing their screening. (SuppProv#101)

An oncologist, noting that this loss of support occurs when women face pressures of transitioning back to work or family obligations, commented,

So here’s a woman whose marriage is in turmoil, whose husband may even have left her during this, and now her clinic is leaving her and she’s on her own … that must be scary as hell because there’s nobody out there to support her. (Physician#002)

Need for formal transition from active treatment to follow-up care. Two themes emerged about transitioning from active treatment: transferring care from oncologists to primary care physicians (PCP); and issues of follow-up care (with oncologists or PCPs). Survivors felt lost in transitioning from specialty to primary care, or expressed apprehension seeing a PCP rather than a cancer specialist. One stated,

I have my doctor but she is not a specialist. She does what I tell her to and orders a mammogram every year. But, I don’t go to the oncologist anymore, and so I worry. With the specialists, I feel protected. (FocGrp1#5)

Physicians acknowledged the lack of a formal transition to primary care such as a survivorship care program.

Follow-up care issues were common. Physicians stressed that women needed to know how often to return for follow-up once active treatment ends and about recommended examinations and tests, especially when receiving hormonal therapy. Physicians indicated the need for patient education materials specific to patients’ treatments, for example, elevated risk of heart disease with certain chemotherapy agents. An oncologist expressed concern that PCPs are not prepared adequately about late effects and hormonal treatment side effects, and suggested providing summary notes for PCPs detailing these.

Survivors identified several barriers to follow-up care: lacking information on which symptoms merited a call to physicians; financial burden/limited health insurance; lacking appointment reminders; fear of examinations; and limited English proficiency. A survivor stated,

If you have insurance, you can make your appointment, see the doctor, and have your mammogram. I stopped taking my pills because I didn’t have insurance. I tried to get them again but they told me they would cost me a thousand dollars. (FocGrp1#5)

One oncologist suggested scheduling a follow-up appointment before patients leave treatment and calling patients who miss appointments.

Facilitators of regular follow-up care identified by survivors were physicians informing them about symptom monitoring and reporting, having a clinic contact person/navigator, being given a follow-up appointment, being assertive about one’s care, and physicians’ reinforcement of adherence to hormonal treatment and follow-up. According to support providers, a key facilitator was having a clinic contact person/navigator. Once treatment ended, support providers often served as the liaison between the patient and the physician, making them the first point of contact for symptom reporting.

Fear of recurrence especially when obtaining follow-up care. Fear of recurrence dominated survivor interviews. This fear was heightened at the time of follow-up examinations or when they experienced unusual pain. A survivor commented,

Every time I’m due for my mammogram, I can’t sleep, worrying. I lose sleep until I get the letter with my results. Then I feel at peace again. (FocGrp1#9)

Support providers discussed the need to provide reassurance to SSBCS to help them cope with fears of recurrence. Physicians expressed challenges in allaying fears of recurrence among SSBCS, requiring a lot of time when recommending follow-up mammograms.

Desire for information on late effects of treatments and side effects of hormonal therapies. All survivors expressed receiving insufficient information on potential symptoms and side effects. One stated,

Doctors only have five minutes. There has never been someone who gave me guidance like, ‘From now on you have to do this or you might get these symptoms now or in the future. (Survivor#6019)

They indicated uncertainty about what symptoms were “normal” and when symptoms merited a call to the physician. Several survivors reported being unaware that fatigue, arthralgia and neuropathy were side effects of breast cancer treatments until they reported these to physicians.

Physicians stressed the importance of women knowing about the elevated risk of future cancers, symptoms of recurrence, and seeking follow-up care if they experience symptoms that are out of the ordinary. Support providers felt that it was important to provide SSBCS with information on signs of recurrence and when to report these. However, providers expressed concern that giving women too much information might elevate their anxiety. A physician suggested,

It’s probably better to have a symptom list that’s short and relevant for the most common and catastrophic things, same thing with side effects … short to avoid overwhelming the patient. (Physician#001)

Hormonal treatments were of special concern. Survivors expressed a need for information on hormonal treatments and support providers stressed that this information is needed in simple Spanish. Several survivors indicated they stopped taking hormonal treatments due to side effects. One woman experienced severe headaches and heart palpitations, stopped taking the hormonal medication, felt better, and did not inform her physician until her next appointment. A support provider stated,

What I hear from a lot of women is that if side effects are too uncomfortable, they just stop it (hormonal treatment) without saying anything to the doctor. So more information about why they have to take it and that there is a good chance of recurrence is really important. (SuppProv#101)

Likewise, physicians indicated that SSBCS’ lack of information on hormonal treatments often resulted in nonadherence, emphasizing the need to reinforce adherence to prevent recurrence.

Conceptual framework of interventions

Based on triangulation of survey and interview results, we compiled a conceptual framework that includes needs identified, suggested components of a survivorship care intervention to address these needs, potential mediators by which such interventions could improve outcomes, and relevant outcomes (Figure). Survivorship care needs fell into four categories: symptom management, psychosocial, sense of abandonment by health care team, and healthy lifestyles. Survivorship care programs would provide skills training in symptom and stress management, and communicating with providers, family, friends, and coworkers. Mediators include increased self-efficacy, knowledge and perceived social support, ultimately leading to reduced distress (anxiety and depressive symptoms) and stress, and improved health-related quality of life.

Conclusions

Our study aimed to identify the most critical needs of SSBCS in the posttreatment survivorship phase to facilitate the design of survivorship interventions for this vulnerable group. SSBCS, cancer support providers, and cancer physicians reported substantial symptom management, psychosocial, and informational needs among this population. Results from surveys and open-ended interviews were remarkably consistent. Survivors, physicians, and support providers viewed transition out of active treatment as a time of increased psychosocial need and heightened vulnerability.

Our findings are consistent with needs assessments conducted in other breast cancer survivors. Similar to a study of rural white women with breast cancer, fear of recurrence was among the most common psychosocial concerns.¹⁷ Results of two studies that included white, African American and Latina breast cancer survivors were consistent with ours in finding that pain and fatigue were among the most persistent symptoms; in both studies, Latinas were more likely to report pain and a higher number of symptoms.^7,18 The prevalence of sleep problems in our sample was identical to that reported in a sample of African American breast cancer survivors.¹⁹ Our findings of a high need for symptom management information and support, social support from family and friends, and self-management resources were similar to studies of other vulnerable breast cancer survivors.^18,20

Our results suggest that it is critical for health care professionals to provide assistance with managing side effects and information to alleviate fears, and reinforce behaviors of symptom monitoring and reporting, and adherence to follow-up care and hormonal therapies. Yet this information is not being conveyed effectively and is complicated by the need to balance women’s need for information with minimizing anxiety when providing such information.

A limitation of our study is that most of our sample was Mexican origin and may not reflect experiences of Spanish-speaking Latinas of other national origin groups or outside of Northern California. Another limitation is the lack of an English-speaking comparison group, which would have permitted the identification of similarities and differences across language groups. Finally, we did not interview radiation oncologists who may have had opinions that are not represented here.

Survivorship care programs offer great promise for meeting patients’ informational and symptom management needs and improving well-being and communication with clinicians.²¹ Due to limited access to survivorship care information, financial hardships, and pressures from their families to resume their social roles, concerted efforts are needed to develop appropriate survivorship programs for SSBCS.²² Unique language, cultural and socioeconomic factors of Spanish-speaking Latinas require tailoring of cancer survivorship programs to best meet their needs.²³ These programs need to provide psychosocial stress and symptom management assistance, simple information on recommended follow-up care, and healthy lifestyle and role reintegration strategies that account for their unique sociocultural contexts.

For the January-February issue of the Journal of Community and Supportive Oncology, the Editor in Chief, Dr David Henry, highlights a thought-provoking article by JCSO Editor, Dr Thomas Strouse, on end-of-life options and legal pathways to physician-assisted dying. He also features a guide by Dr Adam Bagg on the diagnosis and classification of lymphomas, and an in-depth examination of blood-based biopsies by Jane de Lartigue. Three Original Reports hone in on patient care and support and quality of care: a report on the Florida CaPCaS study documents the experiences and needs of black men at the point of prostate cancer diagnosis; another, among Spanish-speaking Latinas with breast cancer, addresses the posttreatment survivorship care needs of that population; and a third looks at strategies to improve the quality of care among head and neck cancer patients. Among the Journal’s regular offerings, the Community Translations section features the approvals of atezolizumab as a therapy for bladder cancer (the first in more than 30 years) and lenvatinib for renal cell carcinoma, and there are two Case Report, one on a patient with breast cancer who experienced severe hyponatremia with seizures associated with single-, low-dose cyclophosphamide, and another about paraneoplastic leukemoid reaction as a poor prognostic marker in a patient with urothelial bladder carcinoma.

Listen to the podcast below.

For the January-February issue of the Journal of Community and Supportive Oncology, the Editor in Chief, Dr David Henry, highlights a thought-provoking article by JCSO Editor, Dr Thomas Strouse, on end-of-life options and legal pathways to physician-assisted dying. He also features a guide by Dr Adam Bagg on the diagnosis and classification of lymphomas, and an in-depth examination of blood-based biopsies by Jane de Lartigue. Three Original Reports hone in on patient care and support and quality of care: a report on the Florida CaPCaS study documents the experiences and needs of black men at the point of prostate cancer diagnosis; another, among Spanish-speaking Latinas with breast cancer, addresses the posttreatment survivorship care needs of that population; and a third looks at strategies to improve the quality of care among head and neck cancer patients. Among the Journal’s regular offerings, the Community Translations section features the approvals of atezolizumab as a therapy for bladder cancer (the first in more than 30 years) and lenvatinib for renal cell carcinoma, and there are two Case Report, one on a patient with breast cancer who experienced severe hyponatremia with seizures associated with single-, low-dose cyclophosphamide, and another about paraneoplastic leukemoid reaction as a poor prognostic marker in a patient with urothelial bladder carcinoma.

Listen to the podcast below.

For the January-February issue of the Journal of Community and Supportive Oncology, the Editor in Chief, Dr David Henry, highlights a thought-provoking article by JCSO Editor, Dr Thomas Strouse, on end-of-life options and legal pathways to physician-assisted dying. He also features a guide by Dr Adam Bagg on the diagnosis and classification of lymphomas, and an in-depth examination of blood-based biopsies by Jane de Lartigue. Three Original Reports hone in on patient care and support and quality of care: a report on the Florida CaPCaS study documents the experiences and needs of black men at the point of prostate cancer diagnosis; another, among Spanish-speaking Latinas with breast cancer, addresses the posttreatment survivorship care needs of that population; and a third looks at strategies to improve the quality of care among head and neck cancer patients. Among the Journal’s regular offerings, the Community Translations section features the approvals of atezolizumab as a therapy for bladder cancer (the first in more than 30 years) and lenvatinib for renal cell carcinoma, and there are two Case Report, one on a patient with breast cancer who experienced severe hyponatremia with seizures associated with single-, low-dose cyclophosphamide, and another about paraneoplastic leukemoid reaction as a poor prognostic marker in a patient with urothelial bladder carcinoma.

Listen to the podcast below.

Recently, researchers have been challenged to design methods that ensure that key constituents are partners in research, and not simply participants. Here we describe some innovative approaches we used to engage stakeholders. The approaches are drawn from a patient-centered outcomes research project, focusing on the graphic display of patient-reported outcomes (PROs) data. PROs represent patients’ perspectives on the impact of health, disease, and treatment, without interpretation by a clinician or anyone else. PROs include, among other things, patients’ assessments of their symptoms, their level of physical and psychosocial functioning, and health-related quality-of-life.¹

As a first example of the key role of stakeholders in this project, input from cancer patients and clinicians, drawn from previous research, motivated us to ask whether there might be a “better way” to display PRO data when used to inform clinical practice. Specifically, even though cancer patients and clinicians endorse the importance of PRO data to promote patient-centered care, both groups report challenges using PROs in practice because of difficulty understanding what the PRO scores mean (eg, what is a good score or a bad score?; for individual patients, which scores should clinicians be concerned about?; for clinical trial PROs, what differences in PRO scores between treatments are clinically important?). The challenges in interpreting PRO data result in part from a large number of PRO measures (eg, one database includes more than 1,000 instruments)² and no standards across PRO measures regarding how they are scored and scaled, or in how the data are presented.³ For example, on some PRO measures, higher scores represent better outcomes; on some PRO measures, lower scores represent better outcomes; and on some PRO measures, whether higher or lower scores represent better outcomes depends on the domain being measured. Further, some measures are scaled 0-100, with the extremes representing the best/worst scores possible, whereas others are normed to, for example, a population average of 50. Because of this variation, a score of 70 can have a completely different meaning depending on the PRO measure (or domain within a measure). As noted above, previous research has documented that this variation limits patients’ and clinicians’ understanding of the PRO scores, creating an important barrier to their use in practice.^4-5

To address this stakeholder-driven research question, we undertook a three-part study to identify approaches for PRO data display that can be easily interpreted, regardless of scoring or scaling conventions, with the overall goal of improving patient and clinician understanding and use of PROs in oncology clinical practice. Part 1 of the study identified attributes of graphic displays of PRO data that are helpful and confusing.⁶ Part 2 involved developing improved PRO data presentation approaches.⁷ Part 3 evaluated the accuracy-of-interpretation and clarity of the developed approaches.^8-10 The methods and findings of the three-part study are reported elsewhere;^6-10 here, we describe the various approaches employed to engage stakeholders throughout the project.

As described above, the first reflection of stakeholder input was in the research question we asked. We then sought to identify the key stakeholder groups and ensure that they participated in each stage of the project. The relevant stakeholder groups we identified were: patients and their caregivers; health care providers (eg, oncologists, oncology nurses) who need to understand PRO data for their own consideration and for discussion with patients; and PRO researchers who develop, validate, and apply PRO measures.

Having identified these three key stakeholder groups, we sought to obtain broad representation of their perspectives. For example, we ensured that our investigative team included a cancer survivor, a cancer care provider, and PRO researchers. To supplement the stakeholder input from the investigative team, we formed a nine-member Stakeholder Advisory Board, with multiple representatives from each key constituency. We also aimed to be as broad as possible in the populations sampled for data collection. For example, we extended beyond the Johns Hopkins cancer center to include the Johns Hopkins Clinical Research Network, a consortium of academic and community health systems across the mid-Atlantic United States. Beyond the in-person data collection across the region, our study also included an internet survey of cancer patients/survivors, cancer care providers, and PRO researchers from across the United States and internationally. Taken together, these approaches improve the diversity of our sample and, thereby, the generalizability of our findings.

In addition to obtaining broad perspectives across stakeholder groups, we created genuine partnerships with the stakeholders to inform every aspect of the project. As described above, the study itself was motivated by feedback from cancer patients and clinicians regarding the challenges they experienced when trying to interpret PRO scores, and we therefore ensured that each stakeholder group contributed to the study’s design. Stakeholders also played a critical role in the conduct of the study. For example, in the first part of the study, we conducted one-on-one interviews with 50 cancer patients and 20 cancer clinicians to obtain their insights regarding attributes of current approaches for presenting PRO data that are helpful and confusing.⁶ At the completion of each interview, we asked participants whether they would be interested in partnering with the researchers in developing improved presentation formats in the next phase of the project. These volunteers were organized into work groups that reviewed the findings from the initial round of interviews with the investigative team, provided suggestions regarding candidate formats that could be used to improve presentation approaches, and helped pilot the internet survey.⁷ In this way, research participants had the opportunity to evolve into research partners, providing critically important input throughout the process.

The implementation and dissemination of findings is another area in which stakeholder partnership is particularly valuable. For example, several of our stakeholder partners have an advocacy background, which can be quite useful for conveying the project’s results in a compelling way. Other stakeholders, such as journal editors, are in a position to act directly to implement the study findings by, for example, adding best practices for presenting PRO data to their journal’s author instructions. Notably, some of the skills stakeholders bring come in addition to their role as stakeholders. For example, one of our patient stakeholders has a background in marketing, and this marketing expertise (completely separate from his patient experience) has helped the research team think about how to present data to broad audiences in a meaningful way.

In summary, this project has implemented stakeholder-driven approaches to address an important barrier to patient-centered cancer care. Several key lessons in stakeholder engagement have emerged from this experience. It is important to identify the key constituencies early on in the process. Involving stakeholders from the start enables them to play important roles in every aspect of the study, starting with study design conception. There are also innovative ways to integrate stakeholders in study conduct, such as our work groups of research participants who volunteered to partner with the research team to develop improved data presentation approaches. Implementation and dissemination is another area where stakeholders, based on their background and connections, can play a critical role. Throughout the process, it is valuable to challenge the project to obtain perspectives from as broad a range of stakeholders as possible. Finally, stakeholders have expertise beyond their stakeholder roles, and these skills can be quite valuable to the overall research agenda. In this project, our partnership with stakeholders has helped improve the presentation of PRO data to patients and providers, thereby improving the patient-centeredness of cancer care.

Acknowledgments

The PRO Data Presentation Stakeholder Advisory Board includes Neil K Aaronson, PhD (Netherlands Cancer Institute, Amsterdam); Patricia A Ganz, MD (University of California-Los Angeles and Jonsson Comprehensive Cancer Center, Los Angeles, CA); Ravin Garg, MD (Anne Arundel Medical Center, Annapolis, MD); Michael Fisch, MD (MD Anderson Cancer Center, Houston, TX); Vanessa Hoffman, MPH (Bladder Cancer Advocacy Network, Washington, DC); Bryce B Reeve, PhD (University of North Carolina at Chapel Hill and Lineberger Comprehensive Cancer Center, Chapel Hill, NC); Eden Stotsky-Himelfarb (Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD); Ellen Stovall (National Coalition for Cancer Survivorship, Washington, DC [posthumous]); Matthew Zachary (Stupid Cancer, New York, NY).

The authors thank The Johns Hopkins Clinical Research Network site investigators and staff and, in particular, the patients and clinicians who participated in this project.

Supported by a Patient-Centered Outcomes Research Institute (PCORI) Award (R-1410-24904). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of PCORI, its board of governors or methodology committee. Drs Snyder and Smith are members of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (P30 CA 006973). The funders had no role in the study design; data collection, analysis, or interpretation; writing; or decision to submit.

Recently, researchers have been challenged to design methods that ensure that key constituents are partners in research, and not simply participants. Here we describe some innovative approaches we used to engage stakeholders. The approaches are drawn from a patient-centered outcomes research project, focusing on the graphic display of patient-reported outcomes (PROs) data. PROs represent patients’ perspectives on the impact of health, disease, and treatment, without interpretation by a clinician or anyone else. PROs include, among other things, patients’ assessments of their symptoms, their level of physical and psychosocial functioning, and health-related quality-of-life.¹

As a first example of the key role of stakeholders in this project, input from cancer patients and clinicians, drawn from previous research, motivated us to ask whether there might be a “better way” to display PRO data when used to inform clinical practice. Specifically, even though cancer patients and clinicians endorse the importance of PRO data to promote patient-centered care, both groups report challenges using PROs in practice because of difficulty understanding what the PRO scores mean (eg, what is a good score or a bad score?; for individual patients, which scores should clinicians be concerned about?; for clinical trial PROs, what differences in PRO scores between treatments are clinically important?). The challenges in interpreting PRO data result in part from a large number of PRO measures (eg, one database includes more than 1,000 instruments)² and no standards across PRO measures regarding how they are scored and scaled, or in how the data are presented.³ For example, on some PRO measures, higher scores represent better outcomes; on some PRO measures, lower scores represent better outcomes; and on some PRO measures, whether higher or lower scores represent better outcomes depends on the domain being measured. Further, some measures are scaled 0-100, with the extremes representing the best/worst scores possible, whereas others are normed to, for example, a population average of 50. Because of this variation, a score of 70 can have a completely different meaning depending on the PRO measure (or domain within a measure). As noted above, previous research has documented that this variation limits patients’ and clinicians’ understanding of the PRO scores, creating an important barrier to their use in practice.^4-5

To address this stakeholder-driven research question, we undertook a three-part study to identify approaches for PRO data display that can be easily interpreted, regardless of scoring or scaling conventions, with the overall goal of improving patient and clinician understanding and use of PROs in oncology clinical practice. Part 1 of the study identified attributes of graphic displays of PRO data that are helpful and confusing.⁶ Part 2 involved developing improved PRO data presentation approaches.⁷ Part 3 evaluated the accuracy-of-interpretation and clarity of the developed approaches.^8-10 The methods and findings of the three-part study are reported elsewhere;^6-10 here, we describe the various approaches employed to engage stakeholders throughout the project.

As described above, the first reflection of stakeholder input was in the research question we asked. We then sought to identify the key stakeholder groups and ensure that they participated in each stage of the project. The relevant stakeholder groups we identified were: patients and their caregivers; health care providers (eg, oncologists, oncology nurses) who need to understand PRO data for their own consideration and for discussion with patients; and PRO researchers who develop, validate, and apply PRO measures.

Having identified these three key stakeholder groups, we sought to obtain broad representation of their perspectives. For example, we ensured that our investigative team included a cancer survivor, a cancer care provider, and PRO researchers. To supplement the stakeholder input from the investigative team, we formed a nine-member Stakeholder Advisory Board, with multiple representatives from each key constituency. We also aimed to be as broad as possible in the populations sampled for data collection. For example, we extended beyond the Johns Hopkins cancer center to include the Johns Hopkins Clinical Research Network, a consortium of academic and community health systems across the mid-Atlantic United States. Beyond the in-person data collection across the region, our study also included an internet survey of cancer patients/survivors, cancer care providers, and PRO researchers from across the United States and internationally. Taken together, these approaches improve the diversity of our sample and, thereby, the generalizability of our findings.

In addition to obtaining broad perspectives across stakeholder groups, we created genuine partnerships with the stakeholders to inform every aspect of the project. As described above, the study itself was motivated by feedback from cancer patients and clinicians regarding the challenges they experienced when trying to interpret PRO scores, and we therefore ensured that each stakeholder group contributed to the study’s design. Stakeholders also played a critical role in the conduct of the study. For example, in the first part of the study, we conducted one-on-one interviews with 50 cancer patients and 20 cancer clinicians to obtain their insights regarding attributes of current approaches for presenting PRO data that are helpful and confusing.⁶ At the completion of each interview, we asked participants whether they would be interested in partnering with the researchers in developing improved presentation formats in the next phase of the project. These volunteers were organized into work groups that reviewed the findings from the initial round of interviews with the investigative team, provided suggestions regarding candidate formats that could be used to improve presentation approaches, and helped pilot the internet survey.⁷ In this way, research participants had the opportunity to evolve into research partners, providing critically important input throughout the process.

The implementation and dissemination of findings is another area in which stakeholder partnership is particularly valuable. For example, several of our stakeholder partners have an advocacy background, which can be quite useful for conveying the project’s results in a compelling way. Other stakeholders, such as journal editors, are in a position to act directly to implement the study findings by, for example, adding best practices for presenting PRO data to their journal’s author instructions. Notably, some of the skills stakeholders bring come in addition to their role as stakeholders. For example, one of our patient stakeholders has a background in marketing, and this marketing expertise (completely separate from his patient experience) has helped the research team think about how to present data to broad audiences in a meaningful way.

In summary, this project has implemented stakeholder-driven approaches to address an important barrier to patient-centered cancer care. Several key lessons in stakeholder engagement have emerged from this experience. It is important to identify the key constituencies early on in the process. Involving stakeholders from the start enables them to play important roles in every aspect of the study, starting with study design conception. There are also innovative ways to integrate stakeholders in study conduct, such as our work groups of research participants who volunteered to partner with the research team to develop improved data presentation approaches. Implementation and dissemination is another area where stakeholders, based on their background and connections, can play a critical role. Throughout the process, it is valuable to challenge the project to obtain perspectives from as broad a range of stakeholders as possible. Finally, stakeholders have expertise beyond their stakeholder roles, and these skills can be quite valuable to the overall research agenda. In this project, our partnership with stakeholders has helped improve the presentation of PRO data to patients and providers, thereby improving the patient-centeredness of cancer care.

Acknowledgments

The PRO Data Presentation Stakeholder Advisory Board includes Neil K Aaronson, PhD (Netherlands Cancer Institute, Amsterdam); Patricia A Ganz, MD (University of California-Los Angeles and Jonsson Comprehensive Cancer Center, Los Angeles, CA); Ravin Garg, MD (Anne Arundel Medical Center, Annapolis, MD); Michael Fisch, MD (MD Anderson Cancer Center, Houston, TX); Vanessa Hoffman, MPH (Bladder Cancer Advocacy Network, Washington, DC); Bryce B Reeve, PhD (University of North Carolina at Chapel Hill and Lineberger Comprehensive Cancer Center, Chapel Hill, NC); Eden Stotsky-Himelfarb (Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD); Ellen Stovall (National Coalition for Cancer Survivorship, Washington, DC [posthumous]); Matthew Zachary (Stupid Cancer, New York, NY).

The authors thank The Johns Hopkins Clinical Research Network site investigators and staff and, in particular, the patients and clinicians who participated in this project.

Supported by a Patient-Centered Outcomes Research Institute (PCORI) Award (R-1410-24904). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of PCORI, its board of governors or methodology committee. Drs Snyder and Smith are members of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (P30 CA 006973). The funders had no role in the study design; data collection, analysis, or interpretation; writing; or decision to submit.

Recently, researchers have been challenged to design methods that ensure that key constituents are partners in research, and not simply participants. Here we describe some innovative approaches we used to engage stakeholders. The approaches are drawn from a patient-centered outcomes research project, focusing on the graphic display of patient-reported outcomes (PROs) data. PROs represent patients’ perspectives on the impact of health, disease, and treatment, without interpretation by a clinician or anyone else. PROs include, among other things, patients’ assessments of their symptoms, their level of physical and psychosocial functioning, and health-related quality-of-life.¹

As a first example of the key role of stakeholders in this project, input from cancer patients and clinicians, drawn from previous research, motivated us to ask whether there might be a “better way” to display PRO data when used to inform clinical practice. Specifically, even though cancer patients and clinicians endorse the importance of PRO data to promote patient-centered care, both groups report challenges using PROs in practice because of difficulty understanding what the PRO scores mean (eg, what is a good score or a bad score?; for individual patients, which scores should clinicians be concerned about?; for clinical trial PROs, what differences in PRO scores between treatments are clinically important?). The challenges in interpreting PRO data result in part from a large number of PRO measures (eg, one database includes more than 1,000 instruments)² and no standards across PRO measures regarding how they are scored and scaled, or in how the data are presented.³ For example, on some PRO measures, higher scores represent better outcomes; on some PRO measures, lower scores represent better outcomes; and on some PRO measures, whether higher or lower scores represent better outcomes depends on the domain being measured. Further, some measures are scaled 0-100, with the extremes representing the best/worst scores possible, whereas others are normed to, for example, a population average of 50. Because of this variation, a score of 70 can have a completely different meaning depending on the PRO measure (or domain within a measure). As noted above, previous research has documented that this variation limits patients’ and clinicians’ understanding of the PRO scores, creating an important barrier to their use in practice.^4-5

To address this stakeholder-driven research question, we undertook a three-part study to identify approaches for PRO data display that can be easily interpreted, regardless of scoring or scaling conventions, with the overall goal of improving patient and clinician understanding and use of PROs in oncology clinical practice. Part 1 of the study identified attributes of graphic displays of PRO data that are helpful and confusing.⁶ Part 2 involved developing improved PRO data presentation approaches.⁷ Part 3 evaluated the accuracy-of-interpretation and clarity of the developed approaches.^8-10 The methods and findings of the three-part study are reported elsewhere;^6-10 here, we describe the various approaches employed to engage stakeholders throughout the project.

As described above, the first reflection of stakeholder input was in the research question we asked. We then sought to identify the key stakeholder groups and ensure that they participated in each stage of the project. The relevant stakeholder groups we identified were: patients and their caregivers; health care providers (eg, oncologists, oncology nurses) who need to understand PRO data for their own consideration and for discussion with patients; and PRO researchers who develop, validate, and apply PRO measures.

Having identified these three key stakeholder groups, we sought to obtain broad representation of their perspectives. For example, we ensured that our investigative team included a cancer survivor, a cancer care provider, and PRO researchers. To supplement the stakeholder input from the investigative team, we formed a nine-member Stakeholder Advisory Board, with multiple representatives from each key constituency. We also aimed to be as broad as possible in the populations sampled for data collection. For example, we extended beyond the Johns Hopkins cancer center to include the Johns Hopkins Clinical Research Network, a consortium of academic and community health systems across the mid-Atlantic United States. Beyond the in-person data collection across the region, our study also included an internet survey of cancer patients/survivors, cancer care providers, and PRO researchers from across the United States and internationally. Taken together, these approaches improve the diversity of our sample and, thereby, the generalizability of our findings.

In addition to obtaining broad perspectives across stakeholder groups, we created genuine partnerships with the stakeholders to inform every aspect of the project. As described above, the study itself was motivated by feedback from cancer patients and clinicians regarding the challenges they experienced when trying to interpret PRO scores, and we therefore ensured that each stakeholder group contributed to the study’s design. Stakeholders also played a critical role in the conduct of the study. For example, in the first part of the study, we conducted one-on-one interviews with 50 cancer patients and 20 cancer clinicians to obtain their insights regarding attributes of current approaches for presenting PRO data that are helpful and confusing.⁶ At the completion of each interview, we asked participants whether they would be interested in partnering with the researchers in developing improved presentation formats in the next phase of the project. These volunteers were organized into work groups that reviewed the findings from the initial round of interviews with the investigative team, provided suggestions regarding candidate formats that could be used to improve presentation approaches, and helped pilot the internet survey.⁷ In this way, research participants had the opportunity to evolve into research partners, providing critically important input throughout the process.

The implementation and dissemination of findings is another area in which stakeholder partnership is particularly valuable. For example, several of our stakeholder partners have an advocacy background, which can be quite useful for conveying the project’s results in a compelling way. Other stakeholders, such as journal editors, are in a position to act directly to implement the study findings by, for example, adding best practices for presenting PRO data to their journal’s author instructions. Notably, some of the skills stakeholders bring come in addition to their role as stakeholders. For example, one of our patient stakeholders has a background in marketing, and this marketing expertise (completely separate from his patient experience) has helped the research team think about how to present data to broad audiences in a meaningful way.

In summary, this project has implemented stakeholder-driven approaches to address an important barrier to patient-centered cancer care. Several key lessons in stakeholder engagement have emerged from this experience. It is important to identify the key constituencies early on in the process. Involving stakeholders from the start enables them to play important roles in every aspect of the study, starting with study design conception. There are also innovative ways to integrate stakeholders in study conduct, such as our work groups of research participants who volunteered to partner with the research team to develop improved data presentation approaches. Implementation and dissemination is another area where stakeholders, based on their background and connections, can play a critical role. Throughout the process, it is valuable to challenge the project to obtain perspectives from as broad a range of stakeholders as possible. Finally, stakeholders have expertise beyond their stakeholder roles, and these skills can be quite valuable to the overall research agenda. In this project, our partnership with stakeholders has helped improve the presentation of PRO data to patients and providers, thereby improving the patient-centeredness of cancer care.

Acknowledgments

The PRO Data Presentation Stakeholder Advisory Board includes Neil K Aaronson, PhD (Netherlands Cancer Institute, Amsterdam); Patricia A Ganz, MD (University of California-Los Angeles and Jonsson Comprehensive Cancer Center, Los Angeles, CA); Ravin Garg, MD (Anne Arundel Medical Center, Annapolis, MD); Michael Fisch, MD (MD Anderson Cancer Center, Houston, TX); Vanessa Hoffman, MPH (Bladder Cancer Advocacy Network, Washington, DC); Bryce B Reeve, PhD (University of North Carolina at Chapel Hill and Lineberger Comprehensive Cancer Center, Chapel Hill, NC); Eden Stotsky-Himelfarb (Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD); Ellen Stovall (National Coalition for Cancer Survivorship, Washington, DC [posthumous]); Matthew Zachary (Stupid Cancer, New York, NY).

The authors thank The Johns Hopkins Clinical Research Network site investigators and staff and, in particular, the patients and clinicians who participated in this project.

Supported by a Patient-Centered Outcomes Research Institute (PCORI) Award (R-1410-24904). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of PCORI, its board of governors or methodology committee. Drs Snyder and Smith are members of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (P30 CA 006973). The funders had no role in the study design; data collection, analysis, or interpretation; writing; or decision to submit.

The first immune checkpoint inhibitor was approved for the treatment of head and neck cancer approved in August 2016. Pembrolizumab, which targets the programmed cell death 1 (PD-1) protein, is designed to reinstate the anti-tumor immune response to kill cancer cells and was approved for the treatment of recurrent or metastatic disease that progressed during or after platinum-containing chemotherapy.

Click on the PDF icon at the top of this introduction to read the full article.

The first immune checkpoint inhibitor was approved for the treatment of head and neck cancer approved in August 2016. Pembrolizumab, which targets the programmed cell death 1 (PD-1) protein, is designed to reinstate the anti-tumor immune response to kill cancer cells and was approved for the treatment of recurrent or metastatic disease that progressed during or after platinum-containing chemotherapy.

Click on the PDF icon at the top of this introduction to read the full article.

The first immune checkpoint inhibitor was approved for the treatment of head and neck cancer approved in August 2016. Pembrolizumab, which targets the programmed cell death 1 (PD-1) protein, is designed to reinstate the anti-tumor immune response to kill cancer cells and was approved for the treatment of recurrent or metastatic disease that progressed during or after platinum-containing chemotherapy.

Click on the PDF icon at the top of this introduction to read the full article.

Although there are numerous hard-to-treat tumor types, pancreatic cancer, which most commonly presents as pancreatic ductal adenocarcinoma (PDA) is particularly notorious and arguably the most challenging and deadly of all cancers. It is currently ranked as the fourth most common cause of cancer-related mortality, and looks set to move up to the number 2 slot within the next 15 years.¹ Here, we discuss the evolution of much-needed novel treatment strategies.

Click on the PDF icon at the top of this introduction to read the full article.

Although there are numerous hard-to-treat tumor types, pancreatic cancer, which most commonly presents as pancreatic ductal adenocarcinoma (PDA) is particularly notorious and arguably the most challenging and deadly of all cancers. It is currently ranked as the fourth most common cause of cancer-related mortality, and looks set to move up to the number 2 slot within the next 15 years.¹ Here, we discuss the evolution of much-needed novel treatment strategies.

Click on the PDF icon at the top of this introduction to read the full article.

Although there are numerous hard-to-treat tumor types, pancreatic cancer, which most commonly presents as pancreatic ductal adenocarcinoma (PDA) is particularly notorious and arguably the most challenging and deadly of all cancers. It is currently ranked as the fourth most common cause of cancer-related mortality, and looks set to move up to the number 2 slot within the next 15 years.¹ Here, we discuss the evolution of much-needed novel treatment strategies.

Click on the PDF icon at the top of this introduction to read the full article.

Castleman disease or angiofollicular lymph node hyperplasia is an uncommon cause of an incidental abdominal mass found on imaging. The etiology of Castleman disease is relatively unknown, however, it is thought to be primarily associated with an oversecretion of interleukin-6. The oversecretion of this pro-inflammatory cytokine leads to lymph node hyperplasia. Castleman disease can be classified into 2 categories: unicentric or multicentric. Most cases of unicentric Castleman disease are asymptomatic and are found on routine imaging. It is found predominately in middle-aged persons of equal sex and is managed primarily by surgical resection. We present here a case of a peripancreatic mass diagnosed by surgical excision as Castleman disease, hyaline vascular type.

Click on the PDF icon at the top of this introduction to read the full article.

Castleman disease or angiofollicular lymph node hyperplasia is an uncommon cause of an incidental abdominal mass found on imaging. The etiology of Castleman disease is relatively unknown, however, it is thought to be primarily associated with an oversecretion of interleukin-6. The oversecretion of this pro-inflammatory cytokine leads to lymph node hyperplasia. Castleman disease can be classified into 2 categories: unicentric or multicentric. Most cases of unicentric Castleman disease are asymptomatic and are found on routine imaging. It is found predominately in middle-aged persons of equal sex and is managed primarily by surgical resection. We present here a case of a peripancreatic mass diagnosed by surgical excision as Castleman disease, hyaline vascular type.

Click on the PDF icon at the top of this introduction to read the full article.

Castleman disease or angiofollicular lymph node hyperplasia is an uncommon cause of an incidental abdominal mass found on imaging. The etiology of Castleman disease is relatively unknown, however, it is thought to be primarily associated with an oversecretion of interleukin-6. The oversecretion of this pro-inflammatory cytokine leads to lymph node hyperplasia. Castleman disease can be classified into 2 categories: unicentric or multicentric. Most cases of unicentric Castleman disease are asymptomatic and are found on routine imaging. It is found predominately in middle-aged persons of equal sex and is managed primarily by surgical resection. We present here a case of a peripancreatic mass diagnosed by surgical excision as Castleman disease, hyaline vascular type.

Click on the PDF icon at the top of this introduction to read the full article.

Paraneoplastic Isaacs syndrome is a rare disorder with distinct clinical and electromyographic characteristics. It is a consequence of neoplastic process that is not directly caused by the tumor itself, but usually mediated by immune response primarily against the tumor and neural tissues are damaged owing to bystander effect. Paraneoplastic neurologic disorders may precede cancer diagnosis. Here we report the case of 75-year-old woman who presented with numbness, tingling sensation, and weakness of lower extremities, and was diagnosed with Isaacs syndrome and subsequently small-cell lung cancer. Plasmapheresis and treatment of small-cell lung cancer produced signficant symptoms improvement. We also conduct a complete review of the published case reports and case series of Isaacs syndrome of paraneoplastic etiology, which usually has good response to carbamazepine and to specfic treatment of underlying neoplasm. 

Click on the PDF icon at the top of this introduction to read the full article.

Paraneoplastic Isaacs syndrome is a rare disorder with distinct clinical and electromyographic characteristics. It is a consequence of neoplastic process that is not directly caused by the tumor itself, but usually mediated by immune response primarily against the tumor and neural tissues are damaged owing to bystander effect. Paraneoplastic neurologic disorders may precede cancer diagnosis. Here we report the case of 75-year-old woman who presented with numbness, tingling sensation, and weakness of lower extremities, and was diagnosed with Isaacs syndrome and subsequently small-cell lung cancer. Plasmapheresis and treatment of small-cell lung cancer produced signficant symptoms improvement. We also conduct a complete review of the published case reports and case series of Isaacs syndrome of paraneoplastic etiology, which usually has good response to carbamazepine and to specfic treatment of underlying neoplasm. 

Click on the PDF icon at the top of this introduction to read the full article.

Paraneoplastic Isaacs syndrome is a rare disorder with distinct clinical and electromyographic characteristics. It is a consequence of neoplastic process that is not directly caused by the tumor itself, but usually mediated by immune response primarily against the tumor and neural tissues are damaged owing to bystander effect. Paraneoplastic neurologic disorders may precede cancer diagnosis. Here we report the case of 75-year-old woman who presented with numbness, tingling sensation, and weakness of lower extremities, and was diagnosed with Isaacs syndrome and subsequently small-cell lung cancer. Plasmapheresis and treatment of small-cell lung cancer produced signficant symptoms improvement. We also conduct a complete review of the published case reports and case series of Isaacs syndrome of paraneoplastic etiology, which usually has good response to carbamazepine and to specfic treatment of underlying neoplasm. 

Click on the PDF icon at the top of this introduction to read the full article.

Background There is a dearth of literature on patient quality of life (QoL) after treatment for malignant pleural mesothelioma (MPM).

Objectives To review the literature on QoL after surgery for MPM and assess differences in quality of life between patients who have extrapleural pneumonectomy (EPP) and those who have pleurectomy and decortication (P-D).

Methods We retrieved and reviewed original research studies on quality of life after mesothelioma surgery. They had been published from January 1990 through June 2016, and included 15 articles and 12 datasets for a total of 523 patients.

Results QoL data was available for 102 EPP patients and 296 P-D patients. Two studies directly compared QoL outcomes between the 2 techniques. Symptoms, lung function parameters, and physical and social functioning were still compromised 6 months after surgery. However, P-D patients fared better than did EPP patients across QoL measures.

Limitations The amount of available literature is small, and the studies are heterogeneous.

Conclusions QoL is better for a longer period of time in patients who undergo P-D, compared with those who have EPP. Given the need for multimodality therapy for MPM and the aggressive nature of the disease, QoL outcomes should be strongly considered when choosing type of surgery for mesothelioma. 

Click on the PDF icon at the top of this introduction to read the full article.

Background There is a dearth of literature on patient quality of life (QoL) after treatment for malignant pleural mesothelioma (MPM).

Objectives To review the literature on QoL after surgery for MPM and assess differences in quality of life between patients who have extrapleural pneumonectomy (EPP) and those who have pleurectomy and decortication (P-D).

Methods We retrieved and reviewed original research studies on quality of life after mesothelioma surgery. They had been published from January 1990 through June 2016, and included 15 articles and 12 datasets for a total of 523 patients.

Results QoL data was available for 102 EPP patients and 296 P-D patients. Two studies directly compared QoL outcomes between the 2 techniques. Symptoms, lung function parameters, and physical and social functioning were still compromised 6 months after surgery. However, P-D patients fared better than did EPP patients across QoL measures.

Limitations The amount of available literature is small, and the studies are heterogeneous.

Conclusions QoL is better for a longer period of time in patients who undergo P-D, compared with those who have EPP. Given the need for multimodality therapy for MPM and the aggressive nature of the disease, QoL outcomes should be strongly considered when choosing type of surgery for mesothelioma. 

Click on the PDF icon at the top of this introduction to read the full article.

Background There is a dearth of literature on patient quality of life (QoL) after treatment for malignant pleural mesothelioma (MPM).

Objectives To review the literature on QoL after surgery for MPM and assess differences in quality of life between patients who have extrapleural pneumonectomy (EPP) and those who have pleurectomy and decortication (P-D).

Methods We retrieved and reviewed original research studies on quality of life after mesothelioma surgery. They had been published from January 1990 through June 2016, and included 15 articles and 12 datasets for a total of 523 patients.

Results QoL data was available for 102 EPP patients and 296 P-D patients. Two studies directly compared QoL outcomes between the 2 techniques. Symptoms, lung function parameters, and physical and social functioning were still compromised 6 months after surgery. However, P-D patients fared better than did EPP patients across QoL measures.

Limitations The amount of available literature is small, and the studies are heterogeneous.

Conclusions QoL is better for a longer period of time in patients who undergo P-D, compared with those who have EPP. Given the need for multimodality therapy for MPM and the aggressive nature of the disease, QoL outcomes should be strongly considered when choosing type of surgery for mesothelioma. 

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Background The importance of social support for cancer patients has been established in previous studies. However, much of the existing research has identified associations between general measures of social support and various health indicators. Nevertheless, some research has begun to suggest the utility of more nuanced understandings of how patients receive and use social support.

Objective To examine the roles of nondirective (ie, support that accepts recipients’ feelings and is cooperative with their plans) and directive support (ie, support that prescribes “correct” choices and feelings) as well as social support needs and desires among patients with advanced breast cancer.

Methods We conducted semi-structured interviews (qualitative method) with 8 patients with stage IV breast cancer to collect qualitative information about the disease-related challenges they faced, the support they received from their families and medical teams, and the appropriateness of directive and nondirective support. In addition, we used the 14-item Hospital Anxiety and Depression Scale (HADS) to assess clinically relevant cut-offs for anxiety and depression and the 16-item Social Support Inventory to assess the provision of nondirective and directive social support to the patients (quantitative method).

Results Qualitative findings suggested that there was considerable variability among patients’ reports of social support provided by family, friends, and the medical team. From the qualitative data, patients reported directive support as more useful in times of acute need and emphasized the importance of supportive systems rather than supportive persons in providing emotional support. From the quantitative data, patients reported nondirective support as more typical of support received from both family and medical teams than directive support. On the HADS, 1 patient had a score of 9 on the anxiety subscale, above the score of 7 that is for mild anxiety. No patients scored above the criterion for mild depression, also a score of 7.

Limitations Very small sample limits the ability to generalize findings.

Conclusions The right type of support for patients with advanced breast cancer is contingent on a range of variables, which suggests that the key characteristic of support may not be any particular feature, but the nuanced adjustment of its content and style of delivery to the patient’s circumstances.

Funding Peers for Progress

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Background The importance of social support for cancer patients has been established in previous studies. However, much of the existing research has identified associations between general measures of social support and various health indicators. Nevertheless, some research has begun to suggest the utility of more nuanced understandings of how patients receive and use social support.

Objective To examine the roles of nondirective (ie, support that accepts recipients’ feelings and is cooperative with their plans) and directive support (ie, support that prescribes “correct” choices and feelings) as well as social support needs and desires among patients with advanced breast cancer.

Methods We conducted semi-structured interviews (qualitative method) with 8 patients with stage IV breast cancer to collect qualitative information about the disease-related challenges they faced, the support they received from their families and medical teams, and the appropriateness of directive and nondirective support. In addition, we used the 14-item Hospital Anxiety and Depression Scale (HADS) to assess clinically relevant cut-offs for anxiety and depression and the 16-item Social Support Inventory to assess the provision of nondirective and directive social support to the patients (quantitative method).

Results Qualitative findings suggested that there was considerable variability among patients’ reports of social support provided by family, friends, and the medical team. From the qualitative data, patients reported directive support as more useful in times of acute need and emphasized the importance of supportive systems rather than supportive persons in providing emotional support. From the quantitative data, patients reported nondirective support as more typical of support received from both family and medical teams than directive support. On the HADS, 1 patient had a score of 9 on the anxiety subscale, above the score of 7 that is for mild anxiety. No patients scored above the criterion for mild depression, also a score of 7.

Limitations Very small sample limits the ability to generalize findings.

Conclusions The right type of support for patients with advanced breast cancer is contingent on a range of variables, which suggests that the key characteristic of support may not be any particular feature, but the nuanced adjustment of its content and style of delivery to the patient’s circumstances.

Funding Peers for Progress

Click on the PDF icon at the top of this introduction to read the full article.

Background The importance of social support for cancer patients has been established in previous studies. However, much of the existing research has identified associations between general measures of social support and various health indicators. Nevertheless, some research has begun to suggest the utility of more nuanced understandings of how patients receive and use social support.

Objective To examine the roles of nondirective (ie, support that accepts recipients’ feelings and is cooperative with their plans) and directive support (ie, support that prescribes “correct” choices and feelings) as well as social support needs and desires among patients with advanced breast cancer.

Methods We conducted semi-structured interviews (qualitative method) with 8 patients with stage IV breast cancer to collect qualitative information about the disease-related challenges they faced, the support they received from their families and medical teams, and the appropriateness of directive and nondirective support. In addition, we used the 14-item Hospital Anxiety and Depression Scale (HADS) to assess clinically relevant cut-offs for anxiety and depression and the 16-item Social Support Inventory to assess the provision of nondirective and directive social support to the patients (quantitative method).

Results Qualitative findings suggested that there was considerable variability among patients’ reports of social support provided by family, friends, and the medical team. From the qualitative data, patients reported directive support as more useful in times of acute need and emphasized the importance of supportive systems rather than supportive persons in providing emotional support. From the quantitative data, patients reported nondirective support as more typical of support received from both family and medical teams than directive support. On the HADS, 1 patient had a score of 9 on the anxiety subscale, above the score of 7 that is for mild anxiety. No patients scored above the criterion for mild depression, also a score of 7.

Limitations Very small sample limits the ability to generalize findings.

Conclusions The right type of support for patients with advanced breast cancer is contingent on a range of variables, which suggests that the key characteristic of support may not be any particular feature, but the nuanced adjustment of its content and style of delivery to the patient’s circumstances.

Funding Peers for Progress

Click on the PDF icon at the top of this introduction to read the full article.