Support Groups Can Help Rheumatic Disease Patients

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Fifteen women and men seated around a conference table in a New York City hospital listen intently to one of their peers. A 40-year-old elementary school teacher shares her challenges related to the intersection of rheumatoid arthritis (RA) and the responsibilities of a demanding job.^* With the support and counsel of fellow group members, the teacher has begun to manage living with RA over the past two years and is feeling more secure in her position at work. Her current challenge centers on whether to accept a promotion that would entail an interesting and better paying job at another school.

Despite economic need and personal ambition, the teacher weighs her hard-won, improved work situation against diminished energy levels and the likelihood of increased stress in a new position. Deciding to stay in her current job, she makes a decision “in favor of self-care and joy,” and commits to rest and prioritizing “discretionary energy” to her passion for cycling.

Why Group?

The scene mentioned above took place at a support and education group for people recently diagnosed with RA at the Hospital for Special Surgery (HSS) in New York. The group is cofacilitated by a clinical social worker and a rheumatology nurse, and represents one of many variations of a powerful, albeit underutilized, modality. Dynamic, efficient and cost-effective, groups are adaptable to multiple practice environments with a range of institutional support, infrastructure and availability of trained group leaders.

Evidence-Based Programs

A 2016 multidisciplinary European League Against Rheumatism (EULAR) task force included evidence-based recommendations for incorporating patient education as an integral component of standard care for people with inflammatory arthritis.¹ A large body of evidence demonstrates the efficacy of specifically targeted approaches. Manualized self-management programs, notably the Stanford Patient Education Research Center’s programs for individuals with chronic illness, which are scripted for both content and process, have reported improved outcomes for pain management and self-efficacy.² Cognitive behavioral groups have reported improved outcomes for managing fatigue.³ Peer counseling/health education interventions in lupus and other rheumatologic illnesses have reported improved outcomes for mental health status and fatigue.⁴ Such group interventions can be used with similar outcomes in underserved diverse communities.⁵

Therapeutic Benefits of Group

Group in all its permutations—psychosocial, support, education, peer, skills-based, self-help and others—offers unique therapeutic features. As described by Yalom and Leszcz, participation in a group contributes to an experience of universality, of not being alone.⁶ “I feel so much better coming to this group, and learning that other people have similar concerns and challenges,” says Bonnie, a 28-year-old accountant recently diagnosed with RA.

Many group members share that prior to participating in a group, they had never before met another person with rheumatoid arthritis, lupus, spondyloarthritis or myositis. Newly diagnosed members often comment on the profound experience of learning from veteran members, who share their personal journeys and strategies for coping. Sarah, a retired 72-year-old human resources manager with lupus, noted, “I was terrified and feeling isolated when I first came to group. Now, I can give new members the support I received.”

Theodore R. Fields, MD, attending physician at HSS and professor of clinical medicine at Weill Cornell Medical College, offers a clinician’s perspective: “I highly recommend groups to patients who are considering them. I feel they provide an important service for our patients that is very hard for them to get in any other way. For instance, patients have been especially grateful to speak with other patients about their fatigue, since it is invisible to their spouses, partners and friends, yet is very real and challenging for them.”

In group, confidentiality and nonjudgmental active listening are important guidelines. Ideally, these and other group guidelines create a framework for safety, shared goals, support and cohesiveness.⁶

The HSS group is facilitated by trained professionals who gently guide patient-driven discussion and keep the process on track. Many of our patients come to group with fears about medications and potential side effects. They welcome a safe forum where they can process the flood of emotions, including depression, fear and anxiety that can be part of living with a chronic illness. Equally important, lectures by rheumatologists, other members of the interdisciplinary team and outside experts provide a rationale and contextualization for treatment.

Through participation in group, patients develop self-management strategies, including tools to enhance communication and partnering with the healthcare team, coping with flares and medication side effects and coping with the emotional impact of living with a chronic rheumatologic illness. Sharing this experience through the lens of peers helps to normalize and validate an individual’s experience, and highlight alternative approaches and opportunities for modeling adaptive behaviors for self-management. Challenging cognitive distortions, such as having an “all or nothing” or catastrophic understanding of the side effects of treatment and one’s future, may also help.

Considering Patient & Community Needs

Before launching a group, it is necessary to consider patient and community needs. EULAR recommendations for education and other interventions “aimed at coping with pain, disability, maintenance of ability to work and social participation” provide a conceptual framework for these interventions.¹

Utilizing a culturally sensitive educational needs assessment tool (ENAT) allows patients with arthritis to prioritize the “most important educational/informational needs” from their perspective.⁷ Population-specific literature reviews, structured surveys, key informant interviews and focus groups deepen the practitioner’s understanding of the patient’s unique needs and preferences for education and support to help them manage their illness. This input is essential in developing patient education curriculum.

To maintain the relevance and vibrancy of a group, the patient perspective must always be in the forefront. What do participants say they want and need? What have they identified as being most important to them? The dual-pronged approach of providing essential evidence-based, disease-specific information, integrated with patient-driven curriculum, ensures that a group is patient focused and promotes ownership among program participants. Questionnaires, focus groups and structured interviews are tools of choice for eliciting feedback and measuring outcomes that are most important to patients, and for determining efficacy of interventions and how they can be improved to address the pressing needs of its participants.

When identifying the outcomes and priorities important to patients, consider group participants’ race, ethnicity, gender, sexual orientation, social and economic status, language and health literacy. The importance of doing this cannot be overstated.

Partner Wisdom

A clinician or department with limited experience may find the idea of developing a patient group daunting. At the 2016 and 2017 ACR/ARHP Annual Meetings, 30 healthcare professionals and patient advocates from the U.S., Canada, Latin America and Europe attended a study group focusing on the use of group work with patients with rheumatic illness. At the 2018 Annual Meeting in Chicago, we will continue the discussion.

Among the most pressing concerns raised by study group participants were securing institutional buy-in and funding; engaging multidisciplinary partners; developing group focus and content; and, not insignificantly, addressing novice facilitators’ feelings of inadequacy in a new role.

For some, these concerns may represent insurmountable obstacles. But one approach to consider is a pilot group. Over time, a grant-funded program that demonstrates positive outcomes may succeed in securing a line in its organization’s budget. Other potential barriers are limited resources and trained personnel. Taking an interdisciplinary approach, depending on expertise and interest, physicians, nurses, social workers, physical therapists, pharmacists and others can be recruited for input on curriculum, one-time lectures or deeper involvement.

Practices can also partner with or adapt other organizations’ programs, or access expertise through those whose missions align with yours. These may include hospitals, disease-specific education and advocacy organizations such as the Arthritis Foundation, Spondylitis Association of America, Lupus Foundation of America, Myositis Association and Scleroderma Foundation, as well as social service agencies and social work or psychology departments of universities.

Professional associations, including the ACR/ARHP, National Association of Social Workers (NASW), American Group Psychotherapy Association (AGPA) and American Psychological Association (APA), may also be able to provide guidance and/or recommend group consultants to deliver staff training and supervision.

In the end, through experiencing the power and poetry of group, patients develop a more nuanced perspective and repertoire of tools with which to cope and manage the physical, psychosocial and existential challenges of living with a chronic illness.

To quote Alex, a 45-year-old information technology specialist with lupus: “I can’t imagine how scary and overwhelming this would be without this group—the people, the setting, the information, and the support it provides. I don’t feel alone, and I think this is a huge part of coping with my lupus.”

The ARHP Practice Committee purpose is to foster collaborative interprofessional practice throughout the continuum of care and enhance health professionals as the first point of contact to meet the needs of the consumer and to support rheumatology practices.

Joan Westreich, LCSW-R, a clinical social worker and psychotherapist, is social work coordinator of the Early Arthritis Initiative at Hospital for Special Surgery. Her focus on patients with rheumatologic illness builds on two decades of experience as a clinician and consultant working with a diverse population of individuals, couples, groups and organizations.

References

1. Combe B, Landewe R, Daien CI, et al. 2016 update of the EULAR recommendations for the management of early arthritis. Ann Rheum Dis. 2017 Jun;76(6):948–959.
2. Lorig K, Holman H. Self-management education: History, definition, outcomes, and mechanisms. Ann Behav Med. 2003 Aug;26(1):1–7.
3. Dures E, Kitchen K, Almeida C, et al. ‘They didn’t tell us, they made us work it out ourselves’: Patient perspectives of a cognitive-behavioral program for rheumatoid arthritis fatigue. Arthritis Care Res (Hoboken). 2012 Apr;64(4):494–501.
4. Karlson EW, Liang MH, Eaton H, et al. A randomized clinical trial of a psychoeducational intervention to improve outcomes in systemic lupus erythematosus. Arthritis Rheum. 2004 Jun;50(6):1832–1841.
5. Williams EM, Penfield M, Kamen D, Oates JC. An intervention to reduce psychosocial and biological indicators of stress in African American lupus patients: The balancing lupus experiences with stress strategies study. Open J Prev Med. 2014 Jan;4(1):22–31.
6. Yalom ID, Leszcz M. The Theory and Practice of Group Psychotherapy, 5th ed. New York: Basic Books; 2005.
7. Ndosi M, Bremander A, Hamnes B, et al. Validation of the educational needs assessment tool as a generic instrument for rheumatic diseases in seven European countries. Ann Rheum Dis. 2014 Dec;73(12):2122–2129.

^*Note: All patient information/stories are de-identified and composites of several patients.