The design, user characteristics and efficacy of online support groups for arthritis and other chronic musculoskeletal disorders: a systematic review

Abstract

Purpose: To systematically review the literature investigating peer-to-peer online support groups (OSGs) for persons with chronic musculoskeletal disorders in order to: i) describe the design features of the OSGs; ii) describe the characteristics of OSG participants; and iii) review the efficacy of OSGs. Methods: Six electronic databases were searched from inception to September 2018. The search was based on population and intervention keywords and medical subject headings. Studies focused on peer-to-peer adult OSGs in chronic musculoskeletal conditions were eligible for inclusion. OSGs are virtual spaces where individuals meet to provide each other with various types of non-physical support (e.g. providing advice) for a shared concern. Studies of multi-component online interventions were also eligible if data pertaining to non-synchronous discussion forums were reported independently from other components. Study rigour was assessed using the Critical Appraisal Skills Programme checklist for qualitative study designs, and the Risk of Bias in Non-randomised Studies of Interventions (ROBINS-I) tool for quantitative study designs. The type of host platform; characteristics of group members; presence and type of moderation; and volume of user posts were extracted to describe the OSG design and users' characteristics. Efficacy of OSGs was determined by synthesising qualitative and quantitative data. First, processes and themes providing insight into how OSGs could be efficacious were extracted. Second, quantitative data measuring participants’ level of achievement of these themes or frequency that these themes were discussed were extracted to determine the magnitude of efficacy. Assessment of study rigour and data extraction was performed by a minimum of two reviewers and checked for errors by an additional two. Narrative synthesis of results was conducted due to the heterogeneity of study designs and outcome measures. Results: Of 14,324 titles screened, a total of 19 studies were eligible for inclusion. Ten studies were qualitative, eight were quantitative cross-sectional or cohort studies and one study had a mixed methods design. Arthritis and rheumatic diseases were the primary focus of the OSGs studied (n=15), other conditions were fibromyalgia (n=5), complex regional pain syndrome (n=2) and thoracic outlet syndrome (n=1). Qualitative studies were, on average, moderate-to-high quality. Quantitative study designs were of low-to-moderate risk of bias. The majority of OSGs (n=12) were public, with nine hosted on a purpose-built website. Six studies reported moderation in their studied OSGs, primarily by experienced group members, and discussions were conducted in multiple European languages (e.g., English, Dutch, Italian). Duration of OSG membership ranged from one month to 2.5 years, and the frequency of posting ranged from two per user to more than once per day. The majority of participants in OSGs were women who had the disorder that was the focus of the OSG. Of the six studies reporting employment status, “not working/unemployed” was the most prevalent. The motivation for joining OSGs was reported in five studies. Three studies reported emotional and social support as primary motivators. Sharing information was also listed as a primary motivator in three studies. Efficacy of OSGs was investigated in nine studies. Qualitative studies indicated that OSG efficacy could be achieved through patient empowerment or improving any of the following: health literacy, social support and self-management processes. Two studies reported that over 78% of content in the OSGs they investigated was emotionally supportive or contained information support/guidance about aspects of disease management. This implies that OSG users had high exposure to content that could result in positive outcomes. The magnitude of improvement in patient empowerment (measured as improvements in social support and health literacy) was quantified in two studies. After using OSGs, users rated their improvement as approximately 3 on the 5-point scale, (anchors 1: completely disagree, 5 completely agree). Both studies used the same sample of participants to establish these findings, meaning there is limited generalisability beyond these OSGs. Conclusions: OSGs for chronic musculoskeletal conditions are available in multiple languages and multiple platforms. Similar to other internet-based interventions and consistent with the female predilection for many of the conditions studied, women appear to be the most frequent users of these services. Most of the literature focused on how OSGs may be efficacious as opposed to the magnitude of their efficacy. Thus, whether OSGs actually improve social support and health information remains largely unknown. Limited evidence indicated a small positive effect in patient empowerment, however, further investigation is required in a wider sample of OSGs using randomised control trials designed for the expressed purpose of determining efficacy.