Peer Support in Rheumatic Diseases: A Narrative Literature Review

Figures & data

Figure 1 Study selection flow diagram.

Note: Adapted from Page MJ, McKenzie JE, Bossuyt PM, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71. doi: 10.1136/bmj.n71.

Table 1 Peer Support Interventions in RA/IA

Author	Title	Year	Disease	N=	Demographics	Design	Intervention	Follow-Up	Outcomes	Findings
Hadert and Rodham^Citation27	The invisible reality of arthritis: A qualitative analysis of an online message board	2008	RA/IA	87 messages posted by 60 users; 981 replies from 314 users	Not available	Qualitative	Retrospective analysis of an online message board for patients with arthritis	12 weeks	NA	Themes included the “invisible reality” of living with arthritis, having an opportunity for information exchange, the additional support provided by an online community, and online space as unique forum for emotional exchange. Participants discussed a broad range of issues including medications, side effects, and consequences of their disease.
Shigaki et al^Citation28	Social interactions in an online self-management program for rheumatoid arthritis	2008	RA	30	93% female, mean age 49 years old	Qualitative	Social interactions were evaluated among RA patients participating in online self-management program	10 weeks	Process variables describing social activity in the online environment. Qualitative analysis of board posts was also performed.	Participants utilized discussion board and e-mail features, and community level activity was described as “vibrant”. Chat feature was used less frequently. Participants perceived high levels of support and bonding, and a reported sense of feeling “uniquely understood by others with RA”.
Sandhu et al^Citation29	Peer-to-peer mentoring for individuals with early inflammatory arthritis: feasibility pilot	2013	RA/IA	18 (9 pairs of peer mentors/mentees)	Mentees 78% female, majority >50 years old, majority completed as least some college	Pilot	Peer support program (telephone or face-to-face) for patients with RA	6 months	Medication adherence, self-efficacy, change in health-related quality-of-life and anxiety, coping efficacy, CDAI, social support, self-management	Mentees showed improvements in self-management, coping, social support, but no significant effect on disease activity or medication adherence. Self-efficacy scores for mentors decreased at 3 months (intervention period) and 6 months (post-intervention follow-up) raising concern that being a peer mentor may be a demanding and potentially stressful experience.
McCarron^Citation30	An exploration of the perceived effects of a support group for individuals with rheumatoid arthritis	2015	RA	23	96% female, majority >50 years old, majority completed at least some college	Qualitative	Interviews with participants in a monthly peer-support group for patients with RA	6 months	NA	Support group improved participants’ perceived quality of life, including improvement in emotional health, increased levels of social support, decreased isolation, increase in disease knowledge and management strategies. Participants with longer-standing RA provided valuable mentorship to those more recently diagnosed disease.
Shadick et al^Citation31	A Development and Feasibility Study of a Peer Support Telephone Program in Rheumatoid Arthritis	2018	RA	54	Not available	Case-control	Comparing telephone peer support program to standard of care	6 months	Mean adjusted change differences at 6 months in fatigue, pain, self-efficacy, functional status, flare frequency, medication adherence	Non-significant trend toward improvement in functional status and how RA impacts one’s life. Participants reported many benefits from peer support: 62% felt less alone, 43% better understanding of their illness, 57% felt part of an RA community; also reported feeling calmer (43%), less sad (24%), more support from family and friends (24%) and maintained healthier lifestyle (24%).
des Bordes et al^Citation32	Interactions and Perceptions of Patients with Rheumatoid Arthritis Participating in an Online Support Group	2020	RA	90	94% female, median age 54 years old, 83% white	Qualitative	Online support group for patients with RA	5 weeks	NA	Information sharing emerged as a primary theme in online discussions. Patients shared knowledge and experiences around symptoms, medications, coping mechanisms, and frustrations. Study suggests that online support groups may be viable option for providing peer support to RA patients.
Lopez-Olivo et al^Citation33	A randomized controlled trial evaluating the effects of social networking on chronic disease management in rheumatoid arthritis	2022	RA	210	>90% female, mean age 52 years old, 85% white, majority completed at least some college	Randomized controlled trial	Comparing RA patients participating in peer-moderated social networking group who had access to website with educational materials with a control group (access to educational materials only)	3 months, 6 months	Primary outcome: RA knowledge, self-efficacy, empowerment. Secondary outcome: participation in desired health behaviors, satisfaction w/ peer support, health outcomes, multidimensional health locus of control, mood	Participation in peer-moderated Facebook group significantly improved perceptions of peer support, but this did not translate into significant improvements in primary outcomes (patient knowledge, self-efficacy) for the intervention arm versus control.
Kaya et al^Citation34	Impact of peer-led group education on the quality of life in patients with ankylosing spondylitis	2016	AS	56	82% male, majority >40 years old	Randomized controlled trial	Patients randomized to peer-led education and booklet or booklet only	6 months	Levels of quality-of-life and depression measured at baseline, after intervention (fourth week), and at 6 months	Participating in peer-led education along with an educational booklet did not change quality-of-life and depression scores compared with an educational booklet alone.
Kaya et al^Citation35	Peer-led education or booklet for knowledge transfer about disease: A randomized-controlled trial with ankylosing spondylitis patients	2021	AS						Measures of patient knowledge measured at baseline, after intervention (fourth week) and at 6 months	Participating in peer-led education along with an educational booklet did not increase knowledge transfer about AS compared with an educational booklet alone.

Table 2 Attitudes Toward Peer Support in Rheumatic Diseases

Author	Title	Year	Disease	N=	Demographics	Design	Intervention	Findings
Withall et al^Citation36	Physical activity engagement in early rheumatoid arthritis: a qualitative study to inform intervention development	2016	RA/IA	19	79% female, mean age 60 years old, mean time since diagnosis 3.7 years	Focus groups	Focus groups with RA patients exploring their physical activity needs following diagnosis, experiences relating to physical activity, motivators/facilitators to support physical activity, and suitability of physical activity programs for people with RA	Patients with recent diagnosis of RA are interested in physical activity programming. Group based physical activity programs with a social component may facilitate adherence.
Dures et al^Citation37	Patient preferences for psychological support in inflammatory arthritis: a multicentre survey	2016	IA	1210	74% female, mean age 59 years old, 41% with disease duration <5 years	Survey	Survey administered regarding preferences for psychological support	48% would participate in peer support groups if offered. 37% of respondents would seek psychological support from peers with arthritis.
des Bordes et al^Citation38	Assessing information needs and use of online resources for disease self-management in patients with rheumatoid arthritis: a qualitative study	2018	RA	20	85% female, majority >50 years old, 70% white, 85% with at least some college education	Interviews	Exploring RA patients’ information needs, acceptance of online resources, and the role for peer support	While family members are important sources of support, RA patients prefer support from others with RA. Online peers support was seen as a potential source for emotional support. There were some concerns around potential privacy and confidentiality issues with online support venues.
Navarro-Millám et al^Citation39	Perspectives of Rheumatoid Arthritis Patients on Electronic Communication and Patient-Reported Outcome Data Collection: A Qualitative Study	2019	RA	31	94% female, mean age 51 years old, 52% African American, 11% Hispanic, 37% Caucasian	Focus groups	Exploring perspectives of RA patients regarding electronic recording of PROs between clinical encounters, and sharing this information with providers or peers	RA patients were eager to communicate with others with RA to learn about treatment expectations and disease management, and also as a way to reduce isolation. Working with other RA patients may help improve collection of PROs through motivating factors and overcoming technological barriers. Meeting face-to-face is important for establishing trust before engaging in online communication with peers.
Loyola-Sanchez et al^Citation40	There are still a lot of things that I need: a qualitative study exploring opportunities to improve the health services of First Nations People with arthritis seen at an on-reserve outreach rheumatology clinic	2020	RA/psoriatic arthritis/ osteoarthritis	10	Not available	Interviews	Interviews conducted with arthritis patients and health providers and administrators to characterize experiences with the existing model of care, and consider opportunities for improvement	“Building a community of support” emerged as an important theme. Peer support provides important “validation of the ‘sick role’” for those with arthritis in this community, which may help improve coping mechanisms and facilitate acceptance of living with a chronic condition.
Swärdh et al^Citation41	“A Necessary Investment in Future Health”: Perceptions of Physical Activity Maintenance Among People With Rheumatoid Arthritis	2020	RA	18	83% female, mean age 67 years old	Interviews	Semi-structured interviews with RA patients regarding their perceptions of physical activity maintenance	Peer support emerged as important mechanism to foster affinity for group participation and maintaining physical activity.
Van der Elst et al^Citation42	‘More than just chitchat’: a qualitative study concerning the need and potential format of a peer mentor programme for patients with early rheumatoid arthritis	2021	RA	28	Patients: 60% female, mean age 55 years old; Patient representatives: 100% female, mean age 61 years old, Rheumatology nurses: 100% female, mean age 43 years old; Rheumatologists: 88% female, mean age 45 years old	Focus groups	Exploring attitudes toward peer mentoring in RA among key stakeholders (patients, patient organization representatives, nurses, rheumatologists)	Patient and patient organization representatives feel that peer mentoring can potentially provide newly diagnosed patients with support and practical coping skills. Nurses and rheumatologists see less immediate benefits, and are concerned about the potential lack of control over information provided by peer mentors. Appropriate selection, education and training for coaches is essential.
Feldman et al^Citation43	Designing an intervention for women with systemic lupus erythematosus from medically underserved areas to improve care: a qualitative study	2013	SLE	29	100% female, all ≥18 years old, 80% African American, 83% from medically underserved zip codes	Focus groups	Focus groups with SLE patients to discuss interventions to improve care	The need for better education for patients and family members emerged as a theme. Chronic pain and depression were seen as obstacles to quality care. Patients emphasized strategies to improve education, peer support, and coordination of care via patient navigators.

Table 3 Peer Support Interventions in SLE

Author	Title	Year	Disease	N=	Demographics	Design	Intervention	Follow-Up	Outcomes	Findings
Toral et al^Citation44	Evaluation of a Longstanding Telephone Peer Counseling Service on People with Systemic Lupus Erythematosus and Their Loved Ones	2017	SLE	23	67% aged 40–59 years old, 89% female, 47% Black/African American, 35% White, 31% Hispanic, 18% other race; 94% with SLE >12 years	Qualitative	Survey administered to users of telephone peer-counselor service for SLE patients	NA	NA	68% of users initially accessed service for emotional support and SLE education; 95% felt that their expectations were met. Having someone knowledge able about SLE was seen as the most valuable aspect of the service (72%). 85% indicated better coping with SLE since being matched to a peer counselor. 66% reported feeling less depressed, with the majority crediting the service for this improvement. 71% reported feeling less isolated. 58% reported their communication and/or relationship with their physician had improved, 100% felt the program was responsible for this change. 94% would recommend this service to others.
Williams et al^Citation45	Peer-to-Peer Mentoring for African American Women With Lupus: A Feasibility Pilot	2018	SLE	27 (20 mentees, 7 mentors)	100% African American women ≥18 years old	Pilot	One-on-one peer mentoring including 1 hour weekly telephone call	12 weeks	Primary outcomes: health-related quality-of-life, depression, anxiety, perceived stress, social support, self-management, disease activity; secondary measures: scales for treatment credibility and satisfaction with care delivery; demographics, health literacy, coping, and trust also assessed	Non-significant improvements in quality-of-life measures of physical function, role function, social function, mental health, health perception, pain, social support, coping, health literacy, and trust. Significant decrease in anxiety, depression. No significant change in self-management items. Significant decrease in global rating of patient reported disease activity.
Faith et al^Citation46	Research Ethics in Behavioral Interventions Among Special Populations: Lessons From the Peer Approaches to Lupus Self-Management Study	2018	SLE			Qualitative	Post intervention focus group w/participants, weekly logs from mentors		Analysis of ethical considerations made in the PALS study	No major adverse events occurred. All mentor/mentee pairs remained same throughout study. Although mentors noted they were trained “not to cross the line” in terms of providing clinical advice, this boundary was crossed in some instances. Some mentors found experience of acting as role model and support person for mentees to be stressful. Some mentors/mentees were dissatisfied over the inclusion of certain topics, namely the sexual health/body image module.
Flournoy-Floyd et al^Citation47	“We Would Still Find Things to Talk About”: Assessment of Mentor Perspectives in a Systemic Lupus Erythematosus Intervention to Improve Disease Self-Management, Empowering SLE Patients	2018	SLE			Qualitative	Mentor logs and mentor interviews with investigator		NA	Mentors took mentorship responsibilities seriously. Mentors desired to work flexibly and collaborative with mentees to overcome obstacles. Mentors able to discuss topics they felt were often marginalized by health care professionals, which was a source of mentor empowerment.
Williams et al^Citation48	Cost-Effectiveness of a Peer Mentoring Intervention to Improve Disease Self-Management Practices and Self-Efficacy Among African American Women with Systemic Lupus Erythematosus: Analysis of the Peer Approaches to Lupus Self-Management (PALS) Pilot Study	2019	SLE			Cost analysis	NA		Cost of intervention; cost effectiveness ratios for anxiety, depression, disease activity; cost savings pre- and post-two-month hospitalization charges	Total cost per patient was $1882.81 or $91.14 per patient per week. Cost effectiveness ratio for anxiety was $3423 per 1 unit decrease in the GAD score, for depression was $818 per 1 unit decrease in PHQ-8, for disease activity was $85.74 per 1 unit decrease in the SLAQ score. Statistically significant difference in pre-hospitalization charges ($24,289) and post-hospitalization charges ($872), representing mean charge savings of $23,426 per individual. Benefit cost ratio of 12.44 (benefits were >12x higher than costs per patient).
White et al^Citation49	Support Methodologies for African American Women With Lupus – Comparing Three Methods’ Effects on Patient Activation and Coping	2021	SLE	114 (100 from PALS, 14 from CALLS)	100% African American women. Median age CALLS cohort 45–54 years old, median age PALS cohort 35–44 years old, majority of patients uninsured	Comparative analysis	Comparing the effect on coping and patient activation of peer-to-peer support (PALS intervention), traditional support group (PALS control), and patient navigator intervention (CALLS intervention)	12 weeks	Patient activation and SLE self-efficacy scores	No statistically significant differences among three intervention methodologies from baseline to post-intervention for patient activation (unadjusted and adjusted). Statistically significant difference in total coping score in the patient navigator group, and differences in scores comparing patient navigator with the support group; only difference in total coping remained significant for patient navigator program in the adjusted model.

Table 4 Peer Support in Other Rheumatic Diseases

Author	Title	Year	Disease	N=	Demographics	Design	Intervention	Findings
Mendelson and Poole^Citation51	Become your own advocate: Advice from women living with scleroderma	2007	SSc	11	100% female, mean age 56 years old, 64% white, mean time since diagnosis 16.3 years	Focus group	General focus group conducted with women diagnosed with SSc	Most participants identified support groups as an effective resource for coping; not all participants found them to be available or useful. The small size of SSc community was identified as a reason local support groups may not be available. Factors related to SSc (fatigue, pain) and unrelated to SSc (work and family obligations) were potential barriers to participation. Attendance at support groups could be both supportive and alarming, given potential severity of disease among other participants. Online support groups represented a viable alternative for some participants.
van der Vaart et al^Citation52	Need for online information and support of patients with systemic sclerosis	2013	SSc/RA	569	65% female, SSc mean age 54 years old, RA mean age 58 years old, SSc disease duration 51% >5 years, RA disease duration 79% >5 years	Survey	Survey assessing internet usage related to rheumatic disease, importance of different online topics, utility of interactive health communication applications	SSc patients demonstrated significantly higher need (compared with RA patients) for online communication with both providers and peer patients.
Alexander et al^Citation50	The relationship between peer support, medication adherence, and quality of life among patients with vasculitis	2015	Vasculitis	172	75% female, mean age 50 years old, 92% white, 94% insured	Survey	Survey assessing the impact of adherence-related peer support on vasculitis’ patients adherence, physical quality-of-life, and mental health	Adherence-related peer support intervention was not predictive of medication adherence or improvements in quality of life after three months
Delisle et al^Citation53	Reasons for non-participation in scleroderma support groups	2016	SSc	280	86% female, mean age 52 years old, 85% white, 28% college-level education	Survey	Survey assessing reasons for non-participation in SSc support groups	Reasons for non-participation include (1) not interested or no perceived need (36%), (2) no local group available (35%), (3) unaware of group existence (13%), (4) practical barriers to access (6%), (5) emotional factors (4%), (6) uncertainty about whether to attend (4%), and (7) negative perceptions of support groups (3%).
Pépin et al^Citation54	Reasons for attending support groups and organizational preferences: A replication study using the North American Scleroderma Support Group Survey	2019	SSc	171	87% female, mean age 56 years old, 86% white, mean time since diagnosis 10.1 years, mean time of support group participation 4.9 years	Survey	Survey assessing reasons for participating in support groups among SSc patient in Canada and US	Survey explored reasons for participation in SSc support groups; survey questions fell into three main categories: interpersonal and social support, disease treatment and symptom management, other aspect of living with SSc. On average, participants rated 77% of items as “important” or “very important” reasons for participating in support groups. Respondents emphasized importance of having the opportunity to share feelings/concerns, as well as the educational aspects of support groups. Reasons for attending support groups are similar for patients from Europe, Australia, and North America.
Gumuchian et al^Citation55	Reasons for attending support groups and organizational preferences: the European scleroderma support group members survey	2019	SSc	213	90% female, mean age 55 years old, 98% white, 66% married, mean time since diagnosis 11 years, mean time of support group participation 6.1 years	Survey	Assess reasons for participating in SSc support groups, and preferences of SSc patients regarding support groups.	SSc patients attend support groups for social support, to learn about treatment and symptom management, and to discuss living with SSc. Patients prefer support groups be held in hospitals or community centers, occur every 1–3 months, last 1–2 hours, have 11–20 members, and have option to include family members or other supports who do not have SSc
Kwakkenbos et al^Citation56	Reasons for not participating in scleroderma patient support groups: a comparison of results from the North American and European scleroderma support group surveys	2021	SSc	470	European cohort: 87.3% female, mean age 52 years old, 95% white; North American cohort: 84% female, mean age 56 years old, 86% white	Survey	Comparison of survey data of North American and European cohorts regarding reasons for non-participation in SSc support groups	Across cohorts, the most common reasons for non-participation were (1) patients already have enough support (57%), (2) patients unaware of local SSc groups (58%). Compared to North American SSc patients, European patients were more likely to report being unfamiliar with what happens at support groups (46% vs 19%), unable to reliably attend meetings (35% vs 17%), and feeling uncomfortable sharing their experiences in a group setting (22% vs 11%).

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