Peer Support in Rheumatic Diseases: A Narrative Literature Review

Introduction

Rheumatic diseases are a heterogenous group of chronic inflammatory conditions that are associated with significant morbidity, mortality, and cost—to both patients and the healthcare system. Rheumatoid arthritis (RA), for example, affects 0.5% to 1% of adults in the United States, and represents a total annual societal cost in excess of $39 billion (in 2005 United States dollars).^1–3 Systemic lupus erythematosus (SLE), while less prevalent, also exerts a significant financial burden; the average annual direct health care costs for individuals with severe disease may exceed $50,000.^4–6

In addition to the physical symptoms associated with these conditions, living with a rheumatic disease can have profound ramifications for an individuals’ emotional and psychological well-being. A new diagnosis of RA may leave patients feeling isolated and ill-equipped to cope with their disease^7,8 Patients living with SLE are subject to disease flares that can lead to organ- or life-threatening complications; these patients can experience severe psychological stress and have a high incidence of comorbid anxiety, depression and psychiatric disease.^9,10

Individualized needs assessments, patient education and self-management strategies are foundational components of chronic disease management, and these have been incorporated into guidelines for the treatment of rheumatic disease.^11,12 Peer support may represent an opportunity for achieving some of these goals by leveraging individuals’ experience living with a disease to support others attempting to do the same. As described in one conceptual analysis, the objective of peer support is the provision of emotional, appraisal and informational assistance by a created social network member who possesses experiential knowledge of a specific behaviour or stressor and similar characteristics as the target population.¹³ The introduction of such peer support measures may, through direct or indirect effects, improve health outcomes and foster a sense of community and belonging for patients that could help reduce the burden on care providers (ie, family and friends) and the healthcare system as a whole.^14,15

While peer support interventions have been shown to be effective in the management of several chronic conditions (including HIV, chronic kidney disease, diabetes mellitus, and malignancy),^16–22 there is considerable variability in how peer support is defined or applied across studies, even within the same condition. A recent systematic review attempted to categorize peer support interventions and assess their efficacy in chronic conditions; this review found significant inconsistencies in how “peers” and “peer support” are defined, ambiguous study designs, and widely variable outcome measurement.¹⁵ Furthermore, to our knowledge, no literature review has queried the specific impacts of peer support interventions for rheumatic conditions. As such, the exploration of peer support interventions in rheumatic disease represents a key knowledge gap and is the focus of this review article.

While rheumatology-focused literature reviews may be lacking, peer support has emerged as a key component of self-management programs—with demonstrated efficacy in the realm of rheumatology. Foundational research by Lorig et al showed that both a generic Chronic Disease Self-Management program and an Arthritis Self-Management Program were efficacious interventions for patients with arthritis.^23,24 These programs may be considered a form of peer support, as the highly structured programming is administered in a group setting by trained peer leaders. While these programs have been shown to be cost effective,²⁵ they are considerably resource-intensive. Direct peer support tools may represent a less resource-intensive intervention—requiring less programmatic structure and peer training—with applications in rheumatic disease. Increasingly, the internet has become a popular destination for patients to seek information and support,²⁶ inviting new ideas for web-based peer support applications. This is particularly relevant for more rare rheumatic conditions, where the internet could facilitate peer-to-peer interactions that would not otherwise be feasible in person.

In this review, we have examined recent literature on peer support interventions in rheumatic disease, with an emphasis on direct peer support interventions rather than those that co-occur within comprehensive disease management programs. We aimed to summarize the documented effects of peer support on rheumatic disease outcomes such as functional status, disease activity, medication adherence, patient knowledge, health care utilization and cost, and other self-efficacy and quality-of-life metrics from both observational and randomized studies of peer support interventions. We also reviewed qualitative interview, survey, and focus-group based studies exploring patient and provider attitudes toward peer support.

Methods

We searched PubMed for English-language articles published between 2000 and 2023 that examined peer support in rheumatic diseases. The year 2000 was selected to help capture more recent studies that explore novel, internet-based approaches to peer support. Search terms included rheumatologic disease states (inflammatory arthritis, rheumatoid arthritis, systemic lupus erythematosus, mixed connective tissue disease, systemic sclerosis, ankylosing spondylitis, psoriatic arthritis, vasculitis, dermatomyositis, polymyositis, gout) and their corresponding MeSH terms in conjunction with terms related to peer support (peer support, peer navigator, peer mentor, peer-led, and peer-to-peer).

After the initial PubMed search, one author (NK) reviewed the titles of all articles and applied the following selection criteria: we excluded studies that were unrelated to rheumatic disease or the topic of peer support in rheumatic disease, primarily about pediatric-aged populations, or focused on non-inflammatory conditions, such as osteoarthritis, fibromyalgia, or chronic back pain. While many articles referenced peer support, or discussed interventions that indirectly incorporated peer support modalities, we focused our review on those studies where peer support was a central focus. We reviewed abstracts of the remaining articles (and reference lists from included articles) to identify studies investigating specific peer support interventions and other articles exploring patient and provider preferences and attitudes toward peer support.

Results

Our initial search yielded 103 full text articles (Figure 1). After applying our exclusion criteria, 52 articles were selected for abstract review. Following review of these abstracts and associated reference lists, we identified 30 articles for inclusion. The majority of these articles focused on peer support interventions (n=9) and attitudes toward peer support (n=8) in RA and other forms of inflammatory arthritis (IA); we identified a smaller body of literature examining the same (n=5, n=1, respectively) in SLE. We also identified articles (n=7) investigating peer support in the context of rarer rheumatic conditions, including vasculitis and systemic sclerosis (SSc). The results of our analysis are organized into the following four sections: peer support interventions in RA/IA, attitudes toward peer support in RA/IA, peer support in SLE, and peer support in other rheumatic diseases.

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.

Peer Support Interventions in RA/IA

Nine articles described peer support interventions in patients with IA; seven of these studies focused primarily on RA, while two examined patients with ankylosing spondylitis (see Table 1).^27–35 Peer support interventions included online message boards and support groups, peer-to-peer telephone support, in-person support groups, and peer-led educational efforts. Patients with RA included in these studies were predominantly female and greater than 50 years old; those with AS were predominantly male, and younger than 50 years old.

Table 1 Peer Support Interventions in RA/IA

Of the nine total articles, three qualitative studies and one RCT explored online peer support interventions for patients with RA, including social interaction via online discussion board and participation in online support groups.^27,28,32,33 Participants found these internet-based interventions to provide unique and valuable opportunities for information exchange, psychosocial support, and fostering a sense of community among patients with shared experiences living with RA. The one RCT in this category also demonstrated improved perceptions of peer support among participants, though these findings did not translate into significant improvements in the primary outcomes of patient knowledge or self-efficacy.³³ Three additional studies (two feasibility pilots, one qualitative analysis) examined telephone and in-person peer support interventions, either individually or in a group setting.^29–31 Participants reported many benefits in terms of improved social support, coping skills, and disease knowledge. One study showed a non-significant trend toward improvement in measures of functional status and how RA impacts one’s life.³¹ The only study that assessed the impact of peer support on disease activity and medication adherence did not show any significant effect for those outcomes.²⁹

The two studies in ankylosing spondylitis patients reviewed findings from a single RCT investigating the impact of a peer-led education program. Neither of these studies showed benefit of the peer-led intervention over the control group in terms of quality-of-life metrics, depression scores, or knowledge transfer.^34,35

In sum, peer support interventions in RA demonstrated some degree of improvement in self-management skills, quality of life metrics, and a trend toward improvement in functional status, though they have not been shown to modify disease activity or medication adherence, and these findings are not necessarily generalizable to patients with other forms of inflammatory arthritis.

Attitudes Toward Peer Support in RA/IA

Eight articles addressed patient perspectives on peer support in the context of their RA or other IA (see Table 2).^36–43 As above, the patients with RA were primarily female and over the age of 50 years old. Several themes emerged, including a general interest in peer support groups, a belief that peer mentoring was important (especially in the setting of a new diagnosis), the importance of seeking support from others living with RA (as opposed to family and friends without the disease), and the ability of peer support to help foster group participation (eg in an organized exercise program). One study also assessed the attitudes of clinicians and nurses toward peer support programs, and identified concerns regarding the potential for lack of control and oversight over information that might be shared in peer support settings.⁴² In summary, patients living with RA/IA value peer support as an important tool to improve self-efficacy, though there remains some concern from providers about potential negative consequences of these interventions.

Table 2 Attitudes Toward Peer Support in Rheumatic Diseases

Peer Support in SLE

Six publications, encompassing two patient cohorts, described peer support interventions among patients with SLE (see Table 3).^44–49 The patients in these cohorts were predominantly African American women. Five articles reviewed findings from the Peer Approaches to Lupus Self-Management (PALS) project, a three-month feasibility pilot investigating a weekly, telephone-based peer mentoring intervention for African American women with SLE.^45–49 One abstract evaluated a long-standing telephone-based peer counseling service for woman with SLE.⁴⁴

Table 3 Peer Support Interventions in SLE

The PALS pilot study showed statistically significant improvements in participants’ anxiety and self-reported disease activity, non-significant improvements in various quality of life measures, including physical function, pain, coping, health literacy, trust, mental health, and trust.⁴⁵ Peer mentors were also empowered by participation in this study, and found they were able to discuss topics with mentees that they felt were often ignored or minimized by health care providers.⁴⁷ Interesting, preliminary data from this pilot also suggested significant cost savings for participants driven by decreased acute care utilization, including a benefit-cost ratio of >12x (meaning the cost savings to the health care system were greater than twelve times the cost of the program per patient),⁴⁸ but the small sample size precluded definitive conclusions. There were no major adverse events during the study, though some mentors found the experience of acting as a role mode/support person to be stressful; mentors were also found to have inappropriately provided clinical advice in some instances.⁴⁶ An article comparing the PALS cohort with another, patient navigator-based intervention, found that participants in the patient navigator group had significantly increased self-efficacy scores when compared with those in the peer-to-peer intervention.⁴⁹

One study explored SLE patients’ attitudes toward peer support. Focus groups were conducted with SLE patients, predominantly from medically underserved areas, regarding potential interventions to improve care. Patients reported feeling isolated at the time of diagnosis, needing assistance to navigate the health care system, and a desire for SLE education. Nearly 70% of those surveyed favored a peer support intervention.⁴³

To summarize, peer support interventions in SLE appear to improve —at least in the short term—self-reported disease activity, anxiety and depression, and to yield healthcare cost savings. Patients living with SLE also appear to have a favorable view of these interventions.

Peer Support in Other Rheumatic Diseases

Seven publications included in our analysis addressed peer support in rarer rheumatologic conditions (see Table 4). One study, a survey of patients with vasculitis, explored the relationship between peer support, medication adherence, and quality of life measures. At three months, an adherence-related peer support intervention was neither predictive of medication adherence nor improvements in quality of life.⁵⁰ The other six studies, all qualitative analyses of survey data or focus groups, examined attitudes toward peer support groups among different cohorts of SSc patients in Europe and North America.

Table 4 Peer Support in Other Rheumatic Diseases

All studies examining peer support in SSc encompassed predominantly white, female patients with a mean age greater than 50 years old. Two of the six studies explored reasons for participation in SSc support groups in Canada, the United States, and Europe. Across cohorts, patients attended support groups for similar reasons: to gain social support, to learn about treatment and symptom management, and to discuss other aspects of living with SSc.^54,55 A focus group with SSc patients identified online support groups as a viable alternative for those who might not have local access to an in-person support group.⁵¹ Compared with RA patients, SSc patients have demonstrated a significantly higher need for online communication with both providers and their peers.⁵² Two other survey-based studies and one focus group also explored reasons for non-participation in SSc support.^56,57 The most common reason for non-participation was lack of interest or no perceived need. A lack of in person support groups (attributed to the relative rarity of the disease) was also a common reason for non-participation. European respondents were relatively less aware of what happens at support groups, and reported feeling less comfortable sharing their experiences in a group setting.⁵⁶ Even among focus group respondents who found group attendance to be supportive, there were concerns about potential adverse impacts, including exposure to severe disease complications that may be frightening or cause illness anxiety among those with less advanced disease.⁵¹

In sum, peer support groups are an important resource for patients living with more rare rheumatologic conditions, like systemic sclerosis, though the impact of these support groups on health outcomes remains unclear.

Discussion

We performed a narrative review of recent studies exploring peer support interventions and attitudes toward peer support in the context of rheumatic disease. Although there was significant heterogeneity in what constitutes peer support (and the mechanisms by which peer support is delivered), we found that patients’ perceptions of peer support were generally favorable across rheumatic conditions, and there exists some signal toward benefit with regard to self-management skills and functional status (in RA/IA) and quality-of-life metrics and health care utilization/costs (in SLE).

Our findings are consistent with existing literature on peer support interventions in the management of other chronic diseases. Studies of peer support for those living with chronic conditions tend to focus on quality of life and self-efficacy outcomes, with most studies reporting positive but non-significant findings.¹⁵ The heterogeneity of peer support, however, poses a significant and foundational challenge to this area of study. Peer support can be incredibly variable; interventions may include professionally-led group sessions, peer-led self-management trainings, peer coaches, community health workers, in-person support groups, as well as telephone- and internet based peer support.⁵⁸ Although many studies on self-management include some type of peer-based intervention, these interventions do not occur in a vacuum, and it can be difficult to parse direct effect of peer support from co-occurring disease management strategies. This is particularly challenging when peer support occurs as part of a robust, resource-intensive self-management program. A systematic review of internet-based peer support interventions across conditions, for example, was unable to draw any meaningful conclusions on the effect of web-based peer support interventions.⁵⁹ In this review we have attempted to highlight the potential impact of direct peer support interventions, but heterogeneity in peer support intervention, study design, level of peer mentor training and education, and outcomes measured limited the conclusions we could draw about many of the interventions.

The studies of peer support interventions in RA and SLE included in this review are limited by the specific outcomes assessed, selection bias of patients willing to participate, and relatively short follow-up periods—all of which can hinder our ability to detect the true impact of peer support interventions in these conditions. The patients with RA who participated in the studies in this review represent a homogenous patient population of older, white women. The lack of signal for peer support interventions impacting disease activity or medication adherence may illustrate that this particular patient population is less likely to benefit in these domains or that these outcomes to not capture the benefits conferred by peer support. Alternatively, the potential benefits of peer support in this group may require a longer time scale—months to years, rather than days to weeks—before they appear. Conversely, most of the data we reviewed on peer support in SLE emerges from a single cohort of African American patients. While the data is impressive, the patients in these studies may represent a more vulnerable patient-population relative to the studies involving people with RA and may not be generalizable to all patients with SLE. Peer support has been posited to be particularly beneficial intervention for African American patients with SLE.⁹ However, it is important to note that available data suggest benefits in the short term; the durability of this response over time remains unknown.

Much of the data in this review focuses on patient and provider perspectives, though some studies do highlight significant findings with respect to peer mentors themselves. While providing peer support can be a source of empowerment for mentors, it may also carry some risk—particularly when mentors themselves constitute a vulnerable patient populating trying to cope with a chronic disease.⁴⁶ Prior qualitative reviews of peer support interventions have similarly highlighted the need to be vigilant for any negative effects from these interventions, including the potential impact on both mentors and mentees.¹⁴ Understanding not only the impact of peer support interventions on patients but also potential unintended consequences to mentors is therefore a high priority for future work.

Conclusion

The literature on peer support in rheumatic diseases is still nascent and the variability in peer support interventions make it challenging to fully evaluate their efficacy or draw comparisons across studies. Future studies should aim to clearly define the intervention, characterize the study population, and identify a minimum set of outcomes, including measures of self-efficacy, shared decision making, and patient satisfaction. To date it has been difficult to detect measurable differences in outcomes, though patients living with rheumatic diseases generally view peer support as a favorable and necessary tool for helping manage their conditions. In addition to perceived benefits to patients, the limited available data suggests that direct peer support may improve self-management skills in patients with RA and help reduce psychological stress in patients with SLE (along with potential cost savings to the healthcare system). The internet will increasingly be utilized as a venue for providing both synchronous and asynchronous peer support, but it should not necessarily supplant more conventional modalities, including telephone and in-person applications. Peer support interventions have the potential to serve as an accessible and dynamic resource for patients with rheumatic diseases, but future studies must attempt to quantify their benefits to justify more wide-spread use.