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Building Tailored Resource Guides to Address Social Risks and Advance Health Equity in the Veterans Health Administration

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Author(s)

Lauren E. Russell, MPH, MPP

Kathleen M. Mitchell, MPH

Meaghan A. Kennedy, MD, MPH

Steven Chrzas, MPH

Lisa Soleymani Lehmann, PhD, MD, MSc

Jennifer W. Silva, LCSW-S

Ernest Moy, MD, MPH

Alicia J. Cohen, MD, MSc

Social risk factors and social needs have significant, often cumulative, impacts on health outcomes and are closely tied to health inequities. Defined as the individual-level adverse social conditions associated with poor health, social risk factors broadly include experiences such as food insecurity and housing instability; whereas the term social needs incorporates a person’s perceptions of and priorities related to their health-related needs.¹ One recent study examining data from the Veterans Health Administration (VHA) found a 27% higher odds of mortality with each additional identified social risk, underscoring the critical link between social risks and veteran health outcomes.²

Assessing Circumstances and Offering Resources for Needs (ACORN), a collaborative quality improvement initiative conducted in partnership with the VHA Office of Health Equity and VHA National Social Work Program, Care Management and Social Work Services, is a social risk screening and referral program that aims to systematically identify and address unmet social needs among veterans to improve health and advance health equity.^3,4 ACORN consists of 2 components: (1) a veteran-tailored screener to identify social risks within 9 domains; and (2) provision of relevant VA and community resources and referrals to address identified needs.^3,5 Veterans who screen positive for ≥ 1 need receive referrals to a social worker or other relevant services, such as nutrition and food services or mental health, support navigating resources, and/or geographically tailored resource guides. This article describes the development and use of resource guides as a cross-cutting intervention component to address unmet social needs in diverse clinical settings and shares lessons learned from implementation in VHA outpatient clinics.

BACKGROUND

Unequal distribution of resources combined with historical discriminatory policies and practices, often linked to institutionalized racism, create inequities that lead to health disparities and hinder advancements in population health.^6,7 Although health care systems alone cannot eliminate all health inequities, they can implement programs to identify social risks and address individual-level needs as 1 component of the multilevel approach needed to achieve health equity.⁸

As a national health care system serving > 9 million veterans, the VHA is well positioned to address social needs as an essential part of health. The VHA routinely screens for certain social risks, including housing instability, food insecurity, and intimate partner violence, and has a robust system of supports to address these and other needs among veterans, such as supportive housing services, vocational rehabilitation, assistance for justice-involved veterans, technology access support, and peer-support services.^9-11 However, the VHA lacks a systematic approach to broader screening for social risks.

To address this gap, ACORN was developed in 2018 by an advisory board of subject matter experts, including clinical leaders, clinical psychologists, social workers, and health services researchers with content expertise in social risks and social needs.³ This interprofessional team sought to develop a veteran-tailored screener and resource referral initiative that could be scaled efficiently across VHA clinical settings.

Although health care organizations are increasingly implementing screening and interventions for social risks within clinical care, best practices and evidence-based tools to support clinical staff in these efforts are limited.¹² Resource guides—curated lists of supportive services and organizations—may serve as a scalable “low-touch” intervention to help clinical staff address needs either alone or with more intensive interventions, such as social worker case management or patient navigation services.¹³

RESOURCE GUIDES—A Cross-Cutting Tool

The VHA has a uniquely robust network of nearly 18,000 social workers with clinical expertise in identifying, comprehensively assessing, and addressing social risks and needs among veterans. Interprofessional patient aligned care teams (PACTs)—a patient-centered medical home initiative that includes embedding social workers into primary care teams—facilitate the VHA’s capacity to address both medical and social needs.¹⁴ Social workers in PACTs and other care settings provide in-depth assessment and case management services to veterans who have a range of complex social needs. However, despite these comprehensive social services, in the setting of universal screening with a tool such as ACORN, it may not be feasible or practical to refer all patients who screen positive to a social worker for immediate follow-up, particularly in settings with capacity or resource limitations. For example, rates of screening positive on ACORN for ≥ 1 social risk have ranged from 48% of veterans in primary care sites and 80% in social work sites to nearly 100% in a PACT clinic for veterans experiencing homelessness.¹⁵

Additionally, a key challenge in the design of social needs interventions is determining how to optimize intervention intensity based on individual patient needs, acuity, and preferences. A substantial proportion of individuals who screen positive for social risks decline offered assistance, such as referrals.¹⁶ Resource guides are a cross-cutting tool that can be offered to veterans across a variety of settings, including primary care, specialty clinics, or emergency departments, as either a standalone intervention or one provided in combination with other resources or services. For patients who may not be interested in or feel comfortable accepting assistance at the time of screening or for those who prefer to research and navigate resources on their own, tailored resource guides can serve as a lower touch intervention to ensure interprofessional clinical staff across a range of settings and specialties have accessible, reliable, and up-to-date information to give to patients at the point of clinical care.¹⁷

Resource guides also can be used with higher touch clinical social work interventions, such as crisis management, supportive counseling, and case management. For example, social workers can use resource guides to provide education on VHA or community resources during clinical encounters with veterans and/or provide the guides to veterans to reference for future needs. Resource guides can further be used as a tool to support community resource navigation provided by nonclinical staff, such as peer specialists or community health workers.

How to BUILD RESOURCE GUIDES

Our team created resource guides (Figure) to provide veterans with concise, geographically tailored lists of VHA and other federal, state, and community services for the social risk domains included on the ACORN screener. To inform and develop a framework for building and maintaining ACORN guides, we first reviewed existing models that use this approach, including Boston Medical Center's WE CARE (Well Child Care, Evaluation, Community Resources, Advocacy, Referral, Education) and Thrive programs. We provide an overview of our process, which can be applied to clinical settings both within and outside the VHA.^18,19

Partnerships

Active collaboration with frontline clinical social workers and local social work leadership is a critical part of identifying and prioritizing quality resources. Equipped with the knowledge of the local resource landscape, social workers can provide recommendations pertaining to national or federal, state, and local programs that have a history of being responsive to patients’ expressed needs.²⁰ VHA social workers have robust knowledge of the veteran-specific resources available at VHA medical centers and nationally, and their clinical training equips them with the expertise to provide guidance about which resources to prioritize for inclusion in the guides.²⁰

After receiving initial guidance from clinical social workers, our team began outreach to compile detailed program information, gauge program serviceability, and build relationships with both VHA and community-based services. Aligning with programs that share a similar mission in addressing social needs has proved crucial when developing the resource guides. Beyond ensuring the accuracy of program information, regular contact provides an opportunity to address capacity and workflow concerns that may arise from increased referrals. Additionally, open lines of communication with various supportive services facilitate connections with additional organizations and resources within the area.

The value of these relationships was evident at the onset of the COVID-19 pandemic, when the ACORN resource guides in use by our clinical site partners required frequent modifications to reflect rapid changes in services (eg, closures, transition to fully virtual programs, social distancing and masking requirements). Having established connections with community organizations was essential to navigating the evolving landscape of available programs and supports.

Curating Quality Resources

ACORN currently screens for social risks in 9 domains: food, housing, utilities, transportation, education, employment, legal, social isolation/loneliness, and digital needs. Each resource guide pertains to a specific social risk domain and associated question(s) in the screener, allowing staff to quickly identify which guides a veteran may benefit from based on their screening responses. The guides are meant to be short and comprehensive but not exhaustive lists of programs and services. We limit the length of the guides to one single-sided page to provide high-yield, geographically tailored resources in an easy-to-use format. The guides should reflect the geographic area served by the VHA medical center or the community-based outpatient clinic (CBOC) where a veteran receives clinical care, but they also may include national- and state-level resources that provide services and programs to veterans.

Although there is local variation in the availability and accessibility of services across social risk domains, some domains have an abundance of resources and organizations at federal or national, state, and/or community levels. To narrow the list of resources to the highest yield programs, we developed a series of questions that serve as selection criteria to inform resource inclusion (Table).

Because the resource guides are intended to be broadly applicable to a large number of veterans, we prioritize generalizable resources over those with narrow eligibility criteria and/or services. When more intensive support is needed, social workers and other VHA clinical and nonclinical staff can supplement the resources on the guides with additional, more tailored resources that are based on individual factors, such as physical residence, income, transportation access, or household composition (eg, veteran families with children or older adults).

Formatting Resource Guides

Along with relevant information, such as the program name, location, and a specific point of contact, brief program descriptions provide information about services offered, eligibility criteria, application requirements, alternate contacts and locations, and website links. At the bottom of each guide, a section is included with the name and direct contact information for a social worker (often the individual assigned to the clinic where the veteran completed the ACORN screener) or another VHA staff member who can be reached for further assistance. These staff members are familiar with the content included on the guides and provide veterans with additional information or higher touch support as necessary. This contact information is useful for veterans who initially decline assistance or referrals but later want to follow up with staff for support or questions.

Visual consistency is a key feature of the ACORN resource guides, and layout and design elements are used to maximize space and enhance usability. Corresponding font colors for all program titles, contact information, and website links assist in visually separating and drawing attention to pertinent contact information. QR codes linked to program websites also are incorporated for veterans to easily access resource information from their smartphone or other electronic device.

Maintaining Resource Guides

To ensure continued accuracy, resource guides are updated about every 6 months to reflect changes in closures, transitions to virtual/in-person services, changes in location, new points of contact, and modifications to services or eligibility requirements. Notations also are made if any changes to services or eligibility are temporary or permanent. Recording these temporary adjustments was critical early in the COVID-19 pandemic as service offerings, eligibility requirements, and application processes changed often.

Updating the guides also facilitates continuous relationship building and connections with VHA and community-based services. Resource guides are living documents: they maintain lines of communication with designated contacts, allow for opportunities to improve the presentation of evolving program information in the guides, and offer the chance to learn about additional programs in the area that may meet veterans' needs.

Creating a Manual for ACORN Resource Guide Development

To facilitate dissemination of ACORN across VHA clinical settings and locations, our team developed a Resource Guide Manual to aid ACORN clinical sites in developing resource guides.²¹ The manual provides step-by-step guidance from recommendations for identifying resources to formatting and layout considerations. Supplemental materials include a checklist to ensure each program description includes the necessary information for veterans to successfully access the resource, as well as page templates and style suggestions to maximize usability. These templates standardize formatting across the social risk domain guides and include options for electronic and paper distribution.

RESOURCE GUIDE LIMITATIONS

The labor involved in building and maintaining multiple guides is considerable and requires a time investment both upfront and long term, which may not be feasible for clinical sites with limited staff. However, many VHA social workers maintain lists of resource and referral services for veterans as part of their routine clinical case management. These lists can serve as a valuable and timesaving starting point in curating high-yield resources for formal resource guides. To further reduce the time needed to develop guides, sites can use ACORN resource guide templates rather than designing and formatting guides from scratch. In addition to informing veterans of relevant services and programs, resource guides also can be provided to new staff, such as social workers or peer specialists, during onboarding to help familiarize them with available services to address veterans’ unmet needs.

Resources included on the guides also are geographically tailored, based on the physical location of the VHA medical center or CBOC. Some community-based services listed may not be as relevant, accessible, available, or convenient to veterans who live far from the clinic, which is relevant for nearly 25% of veterans who live in rural communities.²² This is a circumstance in which the expertise of VHA social workers should be used to recommend more appropriately tailored resources to a veteran. Use of free, publicly available electronic resource databases (eg, 211 Helpline Center) also can provide social workers and patients with an overview of all available resources within their community. There are paid referral platform services that health systems can contract with as well.²³ However, the potential drawbacks to these alternative platforms include high startup costs or costly user-license fees for medical centers or clinics, inconsistent updates to resource information, and lack of compatibility with some electronic health record systems.²³

Resource guides are not intended to take the place of a clinical social worker or other health professional but rather to serve in a supplemental capacity to clinical services. Certain circumstances necessitate a more comprehensive clinical assessment and/or a warm handoff to a social worker, including assistance with urgent food or housing needs, and ACORN workflows are created with urgent needs pathways in mind. Determining how to optimize intervention intensity based on individual patients’ expressed needs, preferences, and acuity remains a challenge for health care organizations conducting social risk screening.¹² While distribution of geographically tailored resource guides can be a useful low touch intervention for some veterans, others will require more intensive case management to address or meet their needs. Some veterans also may fall in the middle of this spectrum, where a resource guide is not enough but intensive case management services facilitated by social workers are not needed or wanted by the patient. Integration of peer specialists, patient navigators, or community health workers who can work with veterans to support them in identifying, connecting with, and receiving support from relevant programs may help fill this gap. Given their knowledge and lived experience, these professionals also can promote patient-centered care as part of the health care team.

CONCLUSIONS

Whether used as a low-touch, standalone intervention or in combination with higher touch services (eg, case management or resource navigation), resource guides are a valuable tool for health care organizations working to address social needs as a component of efforts to advance health equity, reduce health disparities, and promote population health. We provide a pragmatic framework for developing and maintaining resource guides used in the ACORN initiative. However, additional work is needed to optimize the design, content, and format of resource guides for both usability and effectiveness as a social risk intervention across health care settings.

Acknowledgments

We express our gratitude for the Veterans Health Administration (VHA) Office of Health Equity and the VHA National Social Work Program, Care Management and Social Work Services for their support of the Assessing Circumstances and Offering Resources for Needs (ACORN) initiative. We also express our appreciation for those who supported the initial screener development as part of the ACORN Advisory Board, including Stacey Curran, BA; Charles Drebing, PhD; J. Stewart Evans, MD, MSc; Edward Federman, PhD; Maneesha Gulati, LICSW, ACSW; Nancy Kressin, PhD; Kenneth Link, LICSW; Monica Sharma, MD; and Jacqueline Spencer, MD, MPH. We also express our appreciation for those who supported the initial ACORN resource guide development, including Chuck Drebing, PhD, Ed Federman, PhD, and Ken Link, LICSW, and for the clinical care team members, especially the social workers and nurses, at our ACORN partner sites as well as the community-based partners who have helped us develop comprehensive resource guides for veterans. This work was supported by funding from the VHA Office of Health Equity and by resources and use of facilities at the VA Bedford Healthcare System, VA New England Healthcare System, and VA Providence Healthcare System. Alicia J. Cohen was additionally supported by a VA HSR&D Career Development Award (CDA 20-037).

References

1. Alderwick H, Gottlieb LM. Meanings and misunderstandings: a social determinants of health lexicon for health care systems. Milbank Q. 2019;97(2):407-419. doi:10.1111/1468-0009.12390

2. Blosnich JM, Montgomery AE, Taylor LD, Dichter ME. Adverse social factors and all-cause mortality among male and female patients receiving care in the Veterans Health Administration. Prev Med. 2020;141:106272. doi:10.1016/j.ypmed.2020.106272

3. Russell LE, Cohen AJ, Chrzas S, et al. Implementing a social needs screening and referral program among veterans: Assessing Circumstances & Offering Resources for Needs (ACORN). J Gen Intern Med. 2023;38(13):2906-2913. doi:10.1007/s11606-023-08181-9

4. Cohen AJ, Russell LE, Elwy AR, et al. Adaptation of a social risk screening and referral initiative across clinical populations, settings, and contexts in the Department of Veterans Affairs Health System. Front Health Serv. 2023;2. doi:10.3389/frhs.2022.958969

5. Cohen AJ, Kennedy MA, Mitchell KM, Russell LE. The Assessing Circumstances & Offering Resources for Needs (ACORN) initiative. Updated September 2022. Accessed December 4, 2023. https://www.va.gov/HEALTHEQUITY/docs/ACORN_Screening_Tool.pdf

6. Jones CP. Levels of racism: a theoretic framework and a gardener’s tale. Am J Public Health. 2000;90(8):1212-1215. doi:10.2105/ajph.90.8.1212

7. American Public Health Association. Creating the healthiest nation: advancing health equity. Accessed November 28, 2023. https://www.apha.org/-/media/files/pdf/factsheets/advancing_health_equity.ashx?la=en&hash=9144021FDA33B4E7E02447CB28CA3F9D4BE5EF18

8. Castrucci B, Auerbach J. Meeting individual social needs falls short of addressing social determinants of health. Health Aff. Published January 16, 2019. doi:10.1377/hblog20190115.234942

9. Montgomery AE, Fargo JD, Byrne TH, Kane VR, Culhane DP. Universal screening for homelessness and risk for homelessness in the Veterans Health Administration. Am J Public Health. 2013;103(suppl 2):S210-211. doi:10.2105/AJPH.2013.301398

10. Cohen AJ, Rudolph JL, Thomas KS, et al. Food insecurity among veterans: resources to screen and intervene. Fed Pract. 2020;37(1):16-23.

11. Iverson KM, Adjognon O, Grillo AR, et al. Intimate partner violence screening programs in the Veterans Health Administration: informing scale-up of successful practices. J Gen Intern Med. 2019;34(11):2435-2442. doi:10.1007/s11606-019-05240-y

12. National Academies of Sciences, Engineering, and Medicine. Integrating Social Care into the Delivery of Health Care: Moving Upstream to Improve the Nation’s Health. The National Academies Press; 2019. Accessed November 28, 2023. https://nap.nationalacademies.org/catalog/25467/integrating-social-care-into-the-delivery-of-health-care-moving

13. Gottlieb LM, Adler NE, Wing H, et al. Effects of in-person assistance vs personalized written resources about social services on household social risks and child and caregiver health: a randomized clinical trial. JAMA Netw Open. 2020;3(3):e200701. doi:10.1001/jamanetworkopen.2020.0701

14. Cornell PY, Halladay CW, Ader J, et al. Embedding social workers in Veterans Health Administration primary care teams reduces emergency department visits. Health Aff (Millwood). 2020;39(4):603-612. doi:10.1377/hlthaff.2019.01589

15. Cohen AJ, Bruton M, Hooshyar D. US Department of Veterans Affairs, Office of Health Services Research and Development. The WHO’s greatest ICD-10 hits for fiscal year 2022: social determinants of health. Published March 9, 2022. Updated November 6, 2023. Accessed December 4, 2023. https://www.hsrd.research.va.gov/for_researchers/cyber_seminars/archives/video_archive.cfm?SessionID=4125

16. De Marchis EH, Alderwick H, Gottlieb LM. Do patients want help addressing social risks? J Am Board Fam Med. 2020;33(2):170-175. doi:10.3122/jabfm.2020.02.190309

17. Cohen AJ, Isaacson N, Torby M, Smith A, Zhang G, Patel MR. Motivators, barriers, and preferences to engagement with offered social care assistance among people with diabetes: a mixed methods study. Am J Prev Med. 2022;63(3, suppl 2):S152-S163. doi:10.1016/j.amepre.2022.02.022

18. Buitron de la Vega P, Losi S, Sprague Martinez L, et al. Implementing an EHR-based screening and referral system to address social determinants of health in primary care. Med Care. 2019;57(suppl 6, suppl 2):S133-S139. doi:10.1097/MLR.0000000000001029

19. Boston Medical Center. The WE CARE Model. Accessed November 28, 2023. https://www.bmc.org/pediatrics-primary-care/we-care/we-care-model

20. US Department of Veterans Affairs, Office of Rural Health. VA social work. Updated July 11, 2023. Accessed December 4, 2023. https://www.socialwork.va.gov

21. Mitchell KM, Russell LE, Cohen AJ, Kennedy MA. Building ACORN resource guides for veterans. Accessed November 28, 2023. https://www.va.gov/HEALTHEQUITY/docs/ACORN_Resource_Guide_Manual.pdf

22. US Department of Veterans Affairs, Veterans Health Administration, Office of Rural Health. Rural Veterans. Accessed November 28, 2023. https://www.ruralhealth.va.gov/aboutus/ruralvets.asp

23. Cartier Y, Fichtenberg C, Gottlieb L. Community resource referral platforms: a guide for health care organizations. Published 2019. Accessed December 4, 2023. https://sirenetwork.ucsf.edu/tools-resources/resources/community-resource-referral-platforms-guide-health-care-organizations

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Author and Disclosure Information

Lauren E. Russell, MPH, MPP^a*; Kathleen M. Mitchell, MPH^b*; Meaghan A. Kennedy, MD, MPH^b,c; Steven Chrzas, MPH^d; Lisa Soleymani Lehmann, PhD, MD, MSc^e,f; Jennifer W. Silva, LCSW-S^g; Ernest Moy, MD, MPH^a; Alicia J. Cohen, MD, MSc^h,i,j

Correspondence: Kathleen Mitchell (kathleen.mitchell@va.gov)

^*Contributed equally as co-first authors.

^aOffice of Health Equity, Veterans Health Administration, Department of Veterans Affairs, Washington, DC

^bGeriatric Research, Education, and Clinical Center, VA Bedford Healthcare System, Massachusetts

^cBoston University Chobanian & Avedisian School of Medicine, Massachusetts

^dVA Connecticut Healthcare System, West Haven, Connecticut

^eHarvard Medical School, Boston, Massachusetts

^fHarvard T.H. Chan School of Public Health, Boston, Massachusetts

^gNational Social Work Program Office, Care Management and Social Work, Patient Care Services, Department of Veterans Affairs, Washington, DC

^hVA Health Services Research & Development Center of Innovation in Long Term Services and Supports, VA Providence Healthcare System, Providence, Rhode Island

ⁱWarren Alpert Medical School of Brown University, Providence, Rhode Island

^jBrown University School of Public Health, Providence, Rhode Island

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Lauren E. Russell, MPH, MPP

Kathleen M. Mitchell, MPH

Meaghan A. Kennedy, MD, MPH

Steven Chrzas, MPH

Lisa Soleymani Lehmann, PhD, MD, MSc

Jennifer W. Silva, LCSW-S

Ernest Moy, MD, MPH

Alicia J. Cohen, MD, MSc

Author(s)

Lauren E. Russell, MPH, MPP

Kathleen M. Mitchell, MPH

Meaghan A. Kennedy, MD, MPH

Steven Chrzas, MPH

Lisa Soleymani Lehmann, PhD, MD, MSc

Jennifer W. Silva, LCSW-S

Ernest Moy, MD, MPH

Alicia J. Cohen, MD, MSc

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^*Contributed equally as co-first authors.

^aOffice of Health Equity, Veterans Health Administration, Department of Veterans Affairs, Washington, DC

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Correspondence: Kathleen Mitchell (kathleen.mitchell@va.gov)

^*Contributed equally as co-first authors.

^aOffice of Health Equity, Veterans Health Administration, Department of Veterans Affairs, Washington, DC

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BACKGROUND

RESOURCE GUIDES—A Cross-Cutting Tool

How to BUILD RESOURCE GUIDES

Partnerships

Curating Quality Resources

Formatting Resource Guides

Maintaining Resource Guides

Creating a Manual for ACORN Resource Guide Development

RESOURCE GUIDE LIMITATIONS

CONCLUSIONS

Acknowledgments

BACKGROUND

RESOURCE GUIDES—A Cross-Cutting Tool

How to BUILD RESOURCE GUIDES

Partnerships

Curating Quality Resources

Formatting Resource Guides

Maintaining Resource Guides

Creating a Manual for ACORN Resource Guide Development

RESOURCE GUIDE LIMITATIONS

CONCLUSIONS

Acknowledgments

References

16. De Marchis EH, Alderwick H, Gottlieb LM. Do patients want help addressing social risks? J Am Board Fam Med. 2020;33(2):170-175. doi:10.3122/jabfm.2020.02.190309

References

16. De Marchis EH, Alderwick H, Gottlieb LM. Do patients want help addressing social risks? J Am Board Fam Med. 2020;33(2):170-175. doi:10.3122/jabfm.2020.02.190309

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Enhancing Diabetes Self-Management Education and Psychological Services for Veterans With Comorbid Chronic Health and Mental Health Conditions

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Tue, 05/03/2022 - 15:06

Author(s)

Naomi S. Kane, PhD

Lindsey E. Bloor, PhD, ABPP

Jamie Michaels, MS, RD, CDE

Veterans have a higher prevalence of type 2 diabetes mellitus (T2DM) when compared with their civilian counterparts with an overall prevalence rate of 25%.¹ This higher prevalence is similar to other major chronic health conditions, including heart disease and arthritis, with additional costs for disease self-management.² Psychological and behavioral change strategies are a principal means of limiting the severity and even restoring function once T2DM is diagnosed.³ More broadly, there is mounting evidence that addressing distress and behavior change are important across many conditions, particularly T2DM.⁴ Therefore, the US Department of Veterans Affairs (VA) has established patient education and multidisciplinary interventions to optimize engagement in T2DM self-management and health behavior change.⁵

Traditional T2DM education programs aim to meet the American Diabetes Association (ADA) standards of medical care and include a T2DM educator and other allied health professionals. ADA Standard 1.2 emphasizes “productive interactions between a prepared, proactive care team and an informed, activated patient.”⁶ Thus, to attain ADA accreditation, educational programs require instructors to teach about T2DM while engaging patients to help them set and achieve recommended changes. The requirements emphasize setting specific goals, (ie, eating wisely, being physically active, monitoring blood sugars or taking medications). The care team also helps to identify barriers, and at a required follow-up class, patients evaluate how well they met goals and make modifications if needed. The impact of traditional patient education programs to improve glycemic levels is well established.⁷ Importantly, veterans with comorbid mental health conditions may not experience the same beneficial outcomes if or when they participate in traditional diabetes or self-management programs.^8,9 Veterans with T2DM may be particularly vulnerable to chronic stress and effects of comorbid mental health diagnoses.¹⁰ Furthermore, when individuals experience T2DM-related distress, associations with poor health outcomes, including elevated hemoglobin A_1c (HbA_1c), are observed independent of depression.¹¹

Health psychology services integrate into medical settings and strive to reach veterans who may not engage in traditional mental health clinical offerings.¹² These collaborative interventions focus less on diagnostic or screening procedures and more on a patient’s understanding of illness and ability and willingness to carry out treatment regimens. Given the significant roles of distress and co-occurring conditions, health psychology services further aim to provide psychoeducation about stress management in order to explore and enhance motivation for making a wide range of health behavior changes.

The purpose of this study was to evaluate baseline and follow-up HbA_1c, weight, and psychosocial measures, namely, health-related self-efficacy and T2DM-related distress among a small sample that engaged in integrated health psychology services. The focus of this evidence-based psychotherapy service was to improve T2DM self-care and physical health. The participants were offered cognitive and behavioral strategies for setting and meeting personalized T2DM self-management goals. Importantly, motivational interviewing was used throughout to adapt to the participants’ preferences and needs as well as to maintain engagement.

Methods

Primary care providers referred veterans with T2DM to the Health Psychology service at VA Ann Arbor Healthcare System (VAAAHS). A T2DM diagnosis was verified through electronic health record review. Most common referrals included addressing coping with chronic illness and improving glycemic levels. Veterans were invited to participate in a program evaluation project to monitor health-related changes. All participants provided written informed consent and did not receive incentive or payment for participating. The VAAAHS Institutional Review Board reviewed and approved this study.

Intervention

Veterans met individually with a health psychologist or health psychology trainee to create personalized health and behavioral goals for improving T2DM self-management, overall health, and psychological well-being. This intervention included motivational interviewing, SMART (specific, measurable, action-oriented, realistic, timely) goal setting, behavioral activation, acceptance of T2DM-related physical changes, problem-solving therapy, challenging maladaptive disease-related cognitions, and incorporating values to help find motivation for change. Interventionists took a flexible approach and met in-person in primary or specialty care clinics, over the phone, and through telehealth 1 to 4 times a month, meeting participant preferences, with sessions typically ranging from 45 to 60 minutes. The goal of the study was to disseminate and implement evidence-based behavioral change strategies into a multidisciplinary team format without excluding veterans who would benefit from receiving active treatment. Due to this translational approach, a control group was not included for comparison.

Data Collection

Participants completed study measures at the beginning and end of the T2DM-focused intervention sessions. Demographic variables collected included age, sex, race/ethnicity, highest educational attainment, and whether a veteran was prescribed insulin, service connected for T2DM, concurrent enrollment in other educational programs, and time since T2DM diagnosis. Measures were selected based on their relevance to T2DM psychosocial care and diabetes health outcomes.¹³

Body mass index, low-density lipoprotein cholesterol, blood pressure (BP), HbA_1cwithin 3 months of the pre- and postmeasures were collected by reviewing medical records. T2DM complications were collected by self-report, and comorbid physical and mental health conditions were collected by review of the most recent primary care note. The Diabetes Empowerment Scale-Short Form (DES-SF) is a well-validated measure that was used to measure T2DM-related psychosocial self-efficacy.¹⁴ Scores ranged from 8 to 40 with higher scores indicating higher diabetes T2DM empowerment. The Patient Health Questionnaire 9-item (PHQ-9) was used to assess the frequency of somatic (fatigue, appetite, psychomotor) and cognitive symptoms (anhedonia, low mood) of depression over the past 2 weeks.¹⁵ The Generalized Anxiety Disorder 7-item (GAD-7) was used to assess the frequency of common anxiety symptoms, including feelings of worry, difficulty controlling worry, and trouble relaxing.¹⁶ Veterans were also asked to rate their general health on a 5-point Likert scale. Self-rated health is a well-established indicator of disability and risk of future T2DM complications in older adults.^17,18 The Diabetes Distress Scale (DDS) was used to measure emotional burden, physician-related distress, regimen-related distress, and T2DM-related interpersonal distress.¹⁹ Scores > 2.0 suggest clinical significant diabetes distress.²⁰ Medication questionnaires were adapted from Wilson and colleagues, 2013.²¹

Statistical Analyses

Descriptive statistics, including mean and standard deviation (SD) or frequency distributions, as appropriate, were used to characterize the sample. For pre- and postintervention within-group comparisons, a paired samples Student t test analysis was used to evaluate baseline and follow-up measures for statistically significant differences between continuous variables; scores also were evaluated for clinically meaningful change.

Results

This sample (N = 13) of older adults was predominately male, white, with HbA_1c > 7.0, and prescribed insulin (Table). On average, participants were at higher risk for future complications due to high BP, hyperlipidemia, and BMI > 30.0. Regarding participation, veterans were seen for an average of 7.8 sessions (range, 4-13) with 46% service connected for T2DM. Of note, 4 veterans received other T2DM-specific self-management support within the same year of their participation with health psychology, such as attending a T2DM education class or T2DM shared medical appointment.²² Reliability in the current sample for the DES-SF was high (Cronbach α = 0.90), PHQ-9 was good (Cronbach α = 0.81), and GAD-7 was very good (Cronbach α = 0.86).

Descriptive Statistics for the Demographic and Health Characteristics at Baseline table

Among the 13 older adults, the most common T2DM-related complications included peripheral neuropathy (n = 7), heart pain or heart attack (n = 5), and retinopathy (n = 4). Recent primary care notes showed a mean (SD) 7 (2.2) comorbid chronic medical conditions with a high prevalence of cardiometabolic illnesses including hypertension, hyperlipidemia, obstructive sleep apnea, and a diagnosis of chronic pain. Eleven veterans were diagnosed with a mental health condition, including bipolar disorder, depression, anxiety, trauma-related disorder, and sleep disorders. Veterans reported high T2DM emotional distress (mean [SD] 3.1 [1.2]), moderate regimen-related distress (mean [SD] 2.9 [1.1]), and moderate total T2DM distress (mean [SD] 2.4 [0.7]). Physician distress (mean [SD] 1.3 [0.55]) and interpersonal T2DM distress (mean [SD] 1.6 [0.9]) subscales indicated little to no distress. The sample reported mild symptoms of depression (PHQ-9 mean [SD] 8.8 [4.6]); mild symptoms of anxiety (GAD-7 mean, 7.1; SD, 4.4), and Diabetes Empowerment (mean, 31.2; SD, 6.0). Participants described missing an average of 2.4 days within the past 30 days of their T2DM oral medications.

Twelve veterans (92.7%) completed the Follow-up questionnaires. The Figure illustrates statistically significant changes in patient-reported outcomes between baseline and follow-up. Clinically meaningful reductions were shown in total T2DM distress (t₁₁ = 5.03, P < .01), T2DM emotional burden (t₁₁ = 4.83, P = .01), and T2DM regimen-related distress (t₁₁ = 5.14, P < .01). There was a significant increase in T2DM self-efficacy (t₁₁ = 0.32, P = .008) as well. A statistically significant reduction was seen in depressive symptoms (t₁₁= 2.22, P = .048). While HbA_1c fell by .56 percentage points (standard error of the mean [SEM], 31; P = .10), this change was not statistically significant. Follow-up analyses also showed a clinically, though not statistically, significant reduction in weight loss by 6.9 lb. (SEM, 3.8; P = .20), and reductions of generalized anxiety by 1.2 points (SEM, 1.4; P = .42). Pre- and postanalyses did not show differences among self-rated health, physician-related burden, interpersonal-related burden, and indicators of medication taking behavior.

Discussion

This observational study evaluated change among patient-reported T2DM-specific and general distress measures and health outcomes among a small sample of veterans at VAAAHS medical center that engaged in an episode of individual care with health psychology. Statistically significant decreases were observed in T2DM-related distress. Noteworthy, these decreases were observed for the emotional burden and regimen subscales, and each of these was clinically meaningful, falling below a score of 2.0 on the T2DM-specific scale. This is important given that T2DM distress may interfere with the ability to understand and find motivation for engaging in health behavior change. Incorporating stress management interventions into interdisciplinary health programs has been demonstrated to improve not only levels of distress, but also other health outcomes, such as health related quality of life and cardiac events in heart disease.²³ Thus, behavioral health interventions that incorporate cognitive-behavioral strategies to enhance distress-specific coping may prove important to include among individuals with T2DM.

Reductions in T2DM-related distress also converged with increases observed in the T2DM empowerment scale. These significant improvements in perceived ability suggest increased self-efficacy and willingness to follow a daily T2DM regimen. This finding aligns with the social support literature that demonstrates how instrumental and other aspects of autonomous social support mediate improvements in health-related outcomes and reduced T2DM distress.^24,25 Health psychology interventions strive to both provide social support as well as enhance participants’ perceptions and use of existing support as a cognitive-behavioral strategy. Adding in assessments of social support could shed light on such mediating factors.

The ADA standards of care encourage heath care providers to engage patients in conversations in order to better understand the barriers of T2DM self-care.¹³ How to best support patients within a primary care multidisciplinary team remains unclear.²⁶ T2DM distress and negative reactions to T2DM, including symptoms of anxiety and depression, are common and may require specific referral to a mental health provider if repeated attempts at T2DM education do not improve self-management and illness biomarkers.²⁷ Thus, integrating these providers and services within the medical setting aims to reach more veterans and potentially meet these standards of care. With our health psychology integrated services, clinically significant decreases in anxiety and statistically significant decreases in depressive symptoms were observed that approached “mild to no” symptoms. Although this was not measured formally, the veterans were not engaging in mental health specialty care historically or during the year of the health psychology intervention. This suggests that health psychology services helped bridge the gap and address these psychosocial needs within the small sample.

For clinical measures, modest decreases were observed for HbA_1c and weight. The authors recognize that these changes may not be optimal in terms of health status. A review of the specific patient-centered goals may illuminate this finding. For example, 1 participant had a goal to consume fewer sugary beverages and achieved this behavior change. Yet this change alone may not equate to actual weight loss or a lower HbA_1c. Furthermore, in the context of T2DM-related distress, maintaining current weight and/or blood sugar levels may be a more realistic goal. An evaluation of the specific patient-oriented action goals and observed progress may be important outcomes to include in larger studies. Moreover, while not significant, the average HbA_1c decrease of about 1% is comparable with traditional T2DM education and should be considered in light of the sample’s significant mental health comorbidities. While landmark intensive glucose control trials illustrate significant benefits in reductions of hyperglycemia and nonfatal cardiovascular disease, these reductions are associated with an approximate 2-fold risk of hypoglycemia.^28-30 Thus, the focus on improved glycemic control has been criticized as lacking meaning to patients in contrast to preventing T2DM complications and persevering quality of life.³¹

Limitations and Future Directions

Noted limitations include small sample size, the range of time, and a broad number of sessions given that the intervention was tailored to each veteran. Conclusions drawn from a small sample may be influenced by individual outliers. Given co-occurring conditions and moderate levels of distress, all participants may benefit from additional support resources.

In addition to these considerations, having a comparison group could further strengthen the study as part of an observational database. A between-group comparison could help clinicians better understand what the interventions offer as well as some individual factors that relate to participation and success with behavior change. In the future, studies with a priori hypotheses could also consider the trajectories of weight and blood sugar levels for extended periods; for example, 6 months before the intervention and 6 months following.³² Given the complexity of comorbid mental health and chronic medical conditions in this sample, it also may be important to measure the relationships between chronic physical symptoms as an additional barrier for veterans to make health behavior changes.

Conclusions

The authors believe that the health psychology interventions offered important support and motivation for engagement in health behavior change that led to reduced distress in this patient group. It remains a challenge to engage veterans with psychiatric conditions in mental health care, and simultaneously for health care systems that strive to reduce costs and complications associated with chronic illness management.³³ Aligned with these broader health care goals, the ADA aims to reduce complications and cost and improve outcomes for T2DM with guidelines requiring mental and behavioral health interventions. The authors believe that health psychology interventions are a personalized and feasible bridge to address engagement, illness-related distress while improving patient-satisfaction and T2DM self-management.

Acknowledgments

The authors thank the veterans who participated in the observational study. We thank the VA Ann Arbor Healthcare System Institutional Review Board. For instrumental support for health psychology integrated services, we acknowledge Adam Tremblay, MD, Primary Care Chief, and R.J. Schildhouse, MD, Acting Associate Chief of Staff, Ambulatory Care. The work was supported by the Ambulatory Care Service at the VA Ann Arbor Healthcare System and the VA Office of Academic Affiliations.

References

1. Liu Y, Sayam S, Shao X, et al. Prevalence of and trends in diabetes among veterans, United States, 2005-2014. Prev Chronic Dis. 2017;14(12):E135, 1-5. doi:10.5888/pcd14.170230

2. Yu W, Ravelo A, Wagner TH, et al. Prevalence and costs of chronic conditions in the VA health care system. Med Care Res Rev. 2003;60(3)(suppl):146S-167S. doi:10.1177/1077558703257000

3. American Psychological Association. Psychology and Health in Action. Updated 2016. Accessed February 10, 2021. https://www.apa.org/health/fall-2016-updates.pdf

4. The US Burden of Disease Collaborators. The state of US health, 1990-2016. JAMA. 2018;319(14):1444-1472. doi:10.1001/jama.2018.0158

5. Piette JD, Kerr E, Richardson C, Heisler M. Veterans Affairs research on health information technologies for diabetes self-management support. J Diabetes Sci Technol. 2008;2(1):15-23. doi:10.1177/193229680800200104

6. American Diabetes Association. 1. Improving care and promoting health in populations: Standards of Medical Care in Diabetes—2019. Diabetes Care. 2019;42(suppl 1):S7-S12. doi:10.2337/dc19-S001

7. Norris SL, Lau J, Smith SJ, Schmid CH, Engelgau MM. Self-management education for adults with type 2 diabetes. A meta-analysis of the effect on glycemic control. Diabetes Care. 2002;25(7):1159-1171. doi:10.2337/diacare.25.7.1159

8. Janney CA, Owen R, Bowersox NW, Ratz D, Kilbourne EA. Bipolar disorder influences weight loss in the nationally implemented MOVE! program for veterans. Bipolar Disord. 2015;17:87.

9. Piette JD, Kerr EA. The impact of comorbid chronic conditions on diabetes care. Diabetes Care. 2006;29(3):725-731. doi:10.2337/diacare.29.03.06.dc05-2078

10. Trief PM, Ouimette P, Wade M, Shanahan P, Weinstock RS. Post-traumatic stress disorder and diabetes: Co-morbidity and outcomes in a male veterans sample. J Behav Med. 2006;29(5):411-418. doi:10.1007/s10865-006-9067-2

11. Fisher L, Mullan JT, Arean P, Glasgow RE, Hessler D, Masharani U. Diabetes distress but not clinical depression or depressive symptoms is associated with glycemic control in both cross-sectional and longitudinal analyses. Diabetes Care. 2010;33(1):23-28. doi:10.2337/dc09-1238

12. Bohnert KM, Pfeiffer PN, Szymanski BR, McCarthy JF. Continuation of care following an initial primary care visit with a mental health diagnosis: differences by receipt of VHA Primary Care-Mental Health Integration services. Gen Hosp Psychiatry. 2013;35(1):66-70. doi:10.1016/j.genhosppsych.2012.09.002

13. Young-Hyman D, De Groot M, Hill-Briggs F, Gonzalez JS, Hood K, Peyrot M. Psychosocial care for people with diabetes: a position statement of the American Diabetes Association. Diabetes Care. 2016;39(12):2126-2140. doi:10.2337/dc16-2053

14. Anderson R, Fitzgerald J, Gruppen L, Funnell M, Oh M. The diabetes empowerment scale-short form (DES-SF). Diabetes Care. 2003;26(5):1641-1642. doi:10.2337/diacare.26.5.1641-a

15. Kroenke K, Spitzer RL, Williams JBW. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606-613.doi:10.1046/j.1525-1497.2001.016009606.x

16. Spitzer RL, Kroenke K, Williams JBW, Löwe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092-1097. doi:10.1001/archinte.166.10.1092

17. Pinquart M. Correlates of subjective health in older adults: a meta-analysis. Psychol Aging. 2001;16(3):414. doi:10.1037/0882-7974.16.3.414

18. Hayes AJ, Clarke PM, Glasziou PG, Simes RJ, Drury PL, Keech AC. Can self-rated health scores be used for risk prediction in patients with type 2 diabetes? Diabetes Care. 2008;31(4):795-797. doi:10.2337/dc07-1391

19. Polonsky WH, Fisher L, Earles J, et al. Assessing psychosocial distress in diabetes: development of the diabetes distress scale. Diabetes Care. 2005;28(3):626-631. doi:10.2337/diacare.28.3.626

20. Fisher L, Hessler DDM, Polonsky WH, Mullan J. When is diabetes distress meaningful?: Establishing cut points for the Diabetes Distress Scale. Diabetes Care. 2012;35(2):259-264. doi:10.2337/dc11-1572

21. Wilson IB, Fowler FJ Jr, Cosenza CA, et al. Cognitive and field testing of a new set of medication adherence self-report items for HIV care. AIDS Behav. 2013;18(12):2349-2358. doi:10.1007/s10461-013-0610-1

22. Heisler M, Burgess J, Cass J, et al. The Shared Health Appointments and Reciprocal Enhanced Support (SHARES) study: study protocol for a randomized trial. Trials. 2017;18(1):239. doi:10.1186/s13063-017-1959-7

23. Blumenthal JA, Babyak MA, Carney RM, et al. Exercise, depression, and mortality after myocardial infarction in the ENRICHD Trial. Med Sci Sports Exerc. 2004;36(5):746-755. doi:10.1249/01.MSS.0000125997.63493.13

24. Lee AA, Piette JD, Heisler M, Rosland AM. Diabetes distress and glycemic control: the buffering effect of autonomy support from important family members and friends. Diabetes Care. 2018;41(6):1157-1163. doi:10.2337/dc17-2396

25. Baek RN, Tanenbaum ML, Gonzalez JS. Diabetes burden and diabetes distress: the buffering effect of social support. Ann Behav Med. 2014;48(2):1-11.doi:10.1007/s12160-013-9585-4

26. Jortberg BT, Miller BF, Gabbay RA, Sparling K, Dickinson WP. Patient-centered medical home: how it affects psychosocial outcomes for diabetes. Curr Diab Rep. 2012;12(6):721-728. doi:10.1007/s11892-012-0316-1

27. American Diabetes Association. Lifestyle management: standards of medical care in diabetes-2019. Diabetes Care. 2019;41(suppl 1):S38-S50. doi:10.2337/dc19-S005

28. UK Prospective Diabetes Study Group. Effect of intensive blood-glucose control with metformin on complications in overweight patients with type 2 diabetes. Lancet. 1998;352(9131):854-865.

29. The Diabetes Control and Complications Trial Research Group, Control TD, Trial C. The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. The Diabetes Control and Complications Trial Research Group. N Engl J Med. 1993;329(14):977-986. doi:10.1056/NEJM199309303291401

30. Kelly TN, Bazzano LA, Fonseca VA, Thethi TK, Reynolds K, He J. Systematic review: glucose control and cardiovascular disease in type 2 diabetes. Ann Intern Med. 2009;151(6):394-403. doi:10.1037/1072-5245.13.1.64

31. Yudkin JS, Lipska KJ, Montori VM. The idolatry of the surrogate. BMJ. 2012;344(7839):8-10. doi:10.1136/bmj.d7995

32. Lutes LD, Damschroder LJ, Masheb R, et al. Behavioral treatment for veterans with obesity: 24-month weight outcomes from the ASPIRE-VA Small Changes Randomized Trial. J Gen Intern Med. 2017;32(1):40-47. doi:10.1007/s11606-017-3987-0

33. Krejci LP, Carter K, Gaudet T. The vision and implementation of personalized, proactive, patient-driven health care for veterans. Med Care. 2014;52(12)(suppl 5):S5-S8. doi:10.1097/MLR.0000000000000226

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Author and Disclosure Information

Naomi Kane is a Clinical Psychology Postdoctoral Fellow in behavioral medicine and postdeployment health at the New Jersey VA War Related Illness and Injury Study Center in East Orange. Naomi Kane was previously a Psychology Intern; Lindsey Bloor is a Clinical Health Psychologist and the Health Behavior Coordinator; Jamie Michaels is a Registered Dietician and Certified Diabetes Educator; all at the VA Ann Arbor Healthcare System in Michigan. Lindsey Bloor is a Clinical Assistant Professor in Psychiatry at the University of Michigan Medical School in Ann Arbor.
Correspondence: Naomi Kane (naomikanephd@gmail.com)

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Behavioral Interventions in Multiple Sclerosis

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Multiple Sclerosis (MS) is a chronic demyelinating disease of the central nervous system that affects nearly 1 million people in the US.¹ In addition to the accumulation of functional limitations, patients with MS commonly experience mental health and physical symptoms such as depression, anxiety, stress, fatigue, and pain. Day-to-day life with MS requires adaptation to challenges and active maintenance of health and well-being over time. Behavioral intervention and treatment, whether in the form of psychotherapy, health behavior coaching, or the promotion of active self-management, is an integral component of interprofessional care and key aspect of living well with MS.

Behavioral Comorbidities

Depression

Depression is a common concern among individuals with MS. Population-based studies suggest that individuals with MS have a roughly 1 in 4 chance of developing major depressive disorder over their lifetime.² However, at any given time, between 40% and 60% of individuals with MS report clinically meaningful levels of depressive symptoms.³ Although the relationship between MS disease characteristics and depression is unclear, some evidence suggests that depressive symptoms are more common at certain points in illness, such as early in the disease process as individuals grapple with the onset of new symptoms, late in the disease process as they accumulate greater disability, and during active clinical relapses.^3-5

Depression often is comorbid with, and adds to the symptom burden of, other common conditions in MS such as fatigue and cognitive dysfunction.^6-8 Thus, it is not surprising that it associated with poorer overall quality of life (QOL).⁹ Depression also is a risk factor for suicidal ideation and suicide for patients with MS.^10,11

Fortunately, several behavioral interventions show promise in treating depression in patients with MS. Both individual and group formats of cognitive behavioral therapy (CBT), a treatment focused on challenging maladaptive patterns of thought and behavior, have been shown to improve depressive symptoms for people with MS.^12,13 Several brief and efficient group-based programs grounded in CBT and focused on the development of specific skills, including problem solving, goal setting, relationship management, and managing emotions, have been shown to reduce depressive symptoms.^13,14 CBT for depression in MS has been shown to be effective when delivered via telephone.^15,16

Anxiety

Anxiety is common among individuals with MS. Existing data suggest more than one-third of individuals with MS will qualify for a diagnosis of anxiety disorder during their lifetime.¹⁷ The characteristics of anxiety disorders are broad and heterogenous, including generalized anxiety disorder, panic disorder, obsessive compulsive disorders, and health-specific phobias such as needle/injection anxiety. Some estimates suggest a point prevalence of 34% for the presence of clinically meaningful symptoms.¹⁸ Similar to depression, anxiety symptoms can be more common during periods of stress, threat, and transition including early in the disease course while adapting to new diagnosis, late in the disease course with increasing disability, and during clinical relapses.^19-21

The efficacy of behavioral interventions for anxiety in MS is less well established than it is for depression, but some preliminary evidence suggests that individual CBT may be effective for reducing general symptoms of anxiety as well as health-related anxiety.^22,23 Brief, targeted CBT also has been shown to improve injection anxiety, removing a barrier to self-care including the administration of MS disease modifying therapies (DMTs).²⁴

Stress

Stress is commonly conceptualized as a person’s perception that efforts to manage internal and external demands exceed available coping resources.²⁵ Such demands involve both psychological and physiological processes and come in many forms for people with MS and can include daily hassles, major life events, traumatic stress, and perceptions of global nonspecific stress. The relationship between stress and MS remains complex and poorly understood. Nonetheless, individuals with MS frequently report that stress exacerbates their symptoms.²⁶

Some evidence also suggests stress may exacerbate the MS disease process, resulting in more frequent relapses and increased lesion activity visible on MRI.^27,28 In addition to mindfulness (described below), stress inoculation training (CBT and relaxation training), and stress-focused group-based self-management have been shown to be beneficial.^29,30 In an intriguing and rigorous trial, a 24-week stress management therapy based on CBT was associated with the development of fewer new MS lesions visible on MRI.³¹

Adaptation to Illness

MS presents challenges that vary between patients and over time. Individuals may confront new physical and cognitive limitations that inhibit the completion of daily tasks, reduce independence, and limit participation in valued and meaningful activities. In addition, the unpredictability of the disease contributes to perceptions of uncertainty and uncontrollability, which in turn result in higher illness impact and poorer psychological outcomes.³² Building cognitive and behavioral skills to address these challenges can promote adaptation to illness and reduce overall distress associated with chronic illness.³³ Psychosocial intervention also can address the uncertainty commonly experienced by individuals with MS.³⁴

Self-Management

As with any chronic illness, living well with MS requires ongoing commitment and active engagement with health and personal care over time. The process of building knowledge and skills to manage the day-to-day physical, emotional, and social aspects of living with illness often is referred to as self-management.³⁵ For individuals with MS, this may take the form of participation in programs that address adaptation and psychological distress like those described above, but it also may include improving health behavior (eg, physical activity, DMT adherence, modification of maladaptive habits like smoking or hazardous alcohol use) and symptom management (eg, fatigue, pain). Self-management programs typically include education, the practice of identifying, problem solving, and following through with specific and realistic health and wellness goals, as well as the bolstering of self-efficacy.

Physical Activity

Once discouraged for patients with MS, physical activity is now considered a cornerstone of health and wellness. Physical activity and interventions that target various forms of exercise have been shown to improve strength and endurance, reduce functional decline, enhance QOL, and likely reduce mortality.^35-39 A variety of brief behavioral interventions have been shown to improve physical activity in MS. Structured group-based exercise classes focusing on various activities such as aerobic training (eg, cycling) or resistance training (eg, lower extremity strengthening) have demonstrated improvements in various measures of fitness and mood states such as depression and QOL. Brief home-based telephone counseling interventions based in social cognitive theory (eg, goal setting, navigating obstacles) and motivational interviewing strategies (eg, open-ended questions, affirmation, reflective listening, summarizing) also have been shown to be effective not only at increasing physical activity and improving depression and fatigue.^40,41

Adherence to Treatment

One primary focus of adherence to treatment is medication management. For individuals with MS, DMTs represent a primary means of reducing disease burden and delaying functional decline. Many DMTs require consistent self-administration over time. Some evidence suggests that poorer adherence is associated with a greater risk of relapse and more rapid disease progression.^42,43 Brief telephone counseling, again based on social cognitive theory, and principles of motivational interviewing combined with home telehealth monitoring by a care coordinator has been shown to improve adherence to DMTs.⁴⁴

Mindfulness

In recent years, mindfulness training has emerged as a popular and common behavioral intervention among individuals with MS. Programs like Mindfulness-Based Stress Reduction (MBSR) provide training in meditation techniques designed to promote mindfulness, which is defined as paying attention to present moment experience, including sensations, thoughts, and emotions, without judgment or attachment.⁴⁵ Cultivating mindfulness helps people with MS cope with and adapt to symptoms and stressors.⁴⁶ Mindfulness interventions typically are delivered in a group format. For example, MBSR consists of 8 in-person group sessions with daily meditation practice homework. Mindfulness interventions also have been delivered effectively with smartphone apps.⁴⁷ Mindfulness programs have been shown to improve depression, anxiety, fatigue, stress, and QOL for patients with MS.^48-50

Fatigue

More than 90% of individuals with MS report fatigue, and many identify it as their most disabling symptom.⁵¹ Often defined as “a subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual and desired activities,” fatigue has been shown to be associated with longer disease duration, greater physical disability, progressive subtype, and depressive symptoms, although the relative and possibly overlapping impact of these issues is only partially understood.^52,53 Fatigue is associated with poorer overall mental health and negatively impacts work and social roles.⁵⁴

Several behavioral interventions have been developed to address fatigue in MS. Using both individual and group based formats and across several modalities (eg, in-person, telephone, online modules, or a combination), behavioral fatigue interventions most commonly combine traditional general CBT skills (eg, addressing maladaptive thoughts and behaviors) with a variety of fatigue-specific skill building exercises that may include fatigue education, energy conservation strategies, improving sleep, enlisting social support, and self-management goal setting strategies.^35,55-57

Pain

Chronic pain is common and disabling in people with MS.^58,59 Nearly 50% report experiencing moderate to severe chronic pain.^59,60 Individuals with MS reporting pain often are older, more disabled (higher Expanded Disability Status Scale score), and have longer disease duration that those who are not experiencing chronic pain.⁶¹ Patients report various types of pain in the following order of frequency: dysesthetic pain (18.1%), back pain (16.4%), painful tonic spasms (11.0%), Lhermitte sign (9.0%), visceral pain (2.9%), and trigeminal neuralgia (2.0%).⁶¹ Chronic pain has a negative impact on QOL in the areas of sleep, work, maintaining relationships, recreational activities, and overall life enjoyment.⁵⁹ Additionally, research has shown that greater pain intensity and pain-related interference with activities of daily living are both associated with greater depression severity.^62,63

The literature supports the use of behavioral interventions for pain in people with MS.⁶¹ Behavioral interventions include in-person exercise interventions (eg, water aerobics, cycling, rowing ergometer, treadmill walking, and resistance training), self-hypnosis, and telephone-based self-management programs based on CBT.^35,64,65 As described above, CBT-based self-management programs combine learning CBT skills (eg, modifying maladaptive thoughts) with pain-specific skill building such as pain education, pacing activities, and improving sleep. Of note, MS education including, but not limited to, pain was as effective as a CBT-based self-management program in reducing pain intensity and interference.³⁵ In addition, there is evidence to support acceptance- and mindfulness-based interventions for chronic pain, and online mindfulness-based cognitive therapy for MS related pain is currently being tested in a randomized controlled trial.^35,66

Conclusion

People with MS face significant challenges in coping with and adapting to a chronic and unpredictable disease. However, there is considerable evidence that behavioral interventions can improve many of the most common and disabling symptoms in MS including depression, anxiety, stress, fatigue, and pain as well as health behavior and self-care. Research also suggests that improvements in one of these problems (eg, physical inactivity) can influence improvement in other symptoms (eg, depression and fatigue). Unlike other treatment options, behavioral interventions can be delivered in various formats (eg, in-person and electronic health), are time-limited, and cause few (if any) undesirable systemic adverse effects. Behavioral interventions are therefore, an essential part of interprofessional care and rehabilitation for patients with MS.

References

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Author and Disclosure Information

Aaron Turner is Director of Rehabilitation Psychology at VA Puget Sound Health Care System and a Professor at the University of Washington Department of Rehabilitation Medicine, both in Seattle. Lindsey Knowles is a Senior Fellow in the MS Center of Excellence, VA Puget Sound Health Care System and in the University of Washington Department of Medicine.
Correspondence: Aaron Turner (aaron.turner@va.gov)

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The authors report no actual or potential conflicts of interest with regard to this article.

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