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Online support groups (OSGs) are one way for people with chronic diseases, their family or friends, and health professionals to communicate, gain information, and provide social support. As the number of peer-to-peer OSGs for chronic musculoskeletal conditions grows, it is important to gain insight into the different designs of groups available, who is accessing them, if and how they may be effective, and what strategies are being used to implement or increase consumer engagement.
The objectives of this systematic review of people with musculoskeletal conditions were to (1) describe the design features (functions, usage options, moderation, and expert input) of peer-to-peer OSGs, (2) describe the characteristics of the individuals using peer-to-peer OSGs, (3) synthesize the evidence on outcomes of participation, and (4) identify strategies used in the delivery and maintenance of OSGs.
A search comprising terms related to the population (people with musculoskeletal disorders) and the intervention (peer-to-peer OSGs) was conducted in 6 databases. Results were filtered from 1990 (internet inception) to February 2019. Studies identified in the search were screened according to predefined eligibility criteria using a 2-step process. Quantitative studies were appraised by 2 reviewers using the Risk Of Bias In Non-Randomized Studies of Interventions tool. Qualitative studies were appraised by 2 different reviewers using the Critical Appraisal Skills Programme checklist. Extracted data were synthesized narratively.
We examined 21 studies with low to moderate risk of bias. Of these studies, 13 studies included OSGs hosted on public platforms, 11 studies examined OSGs that were conducted in English, and 6 studies used moderators or peer leaders to facilitate engagement. Studies either reported the number of OSG members (n=1985 across all studies) or the number of posts (range: 223-200,000). The majority of OSG members were females who were not full-time employees and with varied levels of education. There were no randomized controlled trials measuring the efficacy of OSGs. Qualitative and quantitative studies identified empowerment, social support, self-management behavior, and health literacy as primary constructs to measure OSG efficacy. Neutral or marginal improvement was reported in these constructs. Sharing experiences and a greater level of engagement appeared to have an important influence on OSGs efficacy. The extent to which members posted on the website influenced engagement.
Across a diverse range of designs, languages, included features, and delivery platforms, peer-to-peer OSGs for chronic musculoskeletal conditions attract predominantly female participants of all ages and education levels. The level of participation of a member appears to be related to their perceived benefit, health literacy, and empowerment. Future studies are needed to identify which design and maintenance strategies have superior efficacy and whether there are concomitant improvements in health outcomes for people with chronic musculoskeletal conditions resulting from participation in OSGs.
PROSPERO International Prospective Register of Systematic Reviews CRD42018090326; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018090326
Chronic musculoskeletal disorders are highly prevalent [
Another key factor in the management of musculoskeletal disorders is social support, as it may positively influence health behaviors susceptible to social influence [
Online support groups (OSGs) are one way in which people with chronic musculoskeletal disorders can access social support and information. OSGs range from self-initiated groups on social media (eg, Facebook) to custom-developed websites run by clinicians or organizations. Their common goal is to provide opportunities for people to share experiences, advice, and support for their chronic disorders [
This study aimed to systematically review the literature evaluating the use of peer-to-peer OSGs for people with chronic musculoskeletal disorders. The 4 objectives of this review were to (1) describe the design features of peer-to-peer OSGs, (2) describe the characteristics of individuals involved in peer-to-peer OSGs, (3) synthesize the evidence on the effectiveness of OSGs, and (4) identify implementation strategies used in the delivery of OSGs.
The Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement was used to ensure complete reporting, and the review protocol was registered in the International Prospective Register of Systematic Reviews (CRD42018090326).
The search strategy was developed in consultation with a librarian from The University of Queensland and involved 2 components: the population (people with chronic musculoskeletal disorders) and the intervention (peer-to-peer online support). The full PubMed search strategy is shown in
Studies involving OSGs for adults (>18 years) with chronic (>3-month duration) musculoskeletal disorders (ie, disorder that primarily affects the musculoskeletal system) were considered eligible. Eligible interventions included any peer-to-peer (ie, participants interacting) OSG (>3 participants on an online platform) with or without moderation or expert input or supervision. Observational studies, cohort studies, case-control studies, randomized controlled trials, qualitative studies, and mixed method studies were eligible for inclusion.
Studies not available in English and studies of pediatric populations and animals were excluded. Telehealth interventions, where health care consultations are delivered remotely via phone or internet, were excluded. Studies that used online peer-to-peer support as part of a combined or complex intervention were only included if the OSG component of the intervention was examined as an independent component, and data were available for extraction. In studies that investigated a range of morbidities, extracted data were limited to those from individuals with musculoskeletal disorders. Studies in which data pertaining to musculoskeletal disorders were not presented separately and could not be extracted were included if musculoskeletal disorders accounted for the majority of cases and authors could provide these data when contacted. When multiple studies were identified from the same groups of authors, they were contacted to determine whether samples used were independent or the same across studies. When no response was received, samples that were similar in terms of musculoskeletal disorder and year of recruitment were assumed to be the same and included only once in the analysis.
Using the eligibility criteria described above, a 2-step process was used for screening and selection. Titles and abstracts of all identified studies were screened by any 2 of the 4 reviewers (LM, MP, MB, and RM) using Covidence (Covidence, Melbourne, Australia). Additional reviewers (KM, JE, and TE) were asked to resolve screening disagreements. Full-text articles of all eligible studies were retrieved and screened by any 2 of the reviewers mentioned above, with conflicts resolved by discussion.
The authors worked in 4 groups (1 for each research question) to extract data using custom-developed spreadsheets. For the first research question relating to the design features of OSGs, the following data were extracted: (1) presence and type of moderation or expert input; (2) functions and design features of host platforms; (3) content, frequency, and volume of member posts and information uploaded; and (4) involvement from participants. The second research question regarding member characteristics involved the extraction of demographics, roles and relationships, and health disorders. For the third research question relating to the effectiveness of OSGs, the following data were extracted: (1) the constructs by which effectiveness was measured, (2) outcome measures utilized to quantify effectiveness constructs, (3) processes and themes explaining any benefits, and (4) results of effectiveness studies or satisfaction ratings. For the fourth research question relating to implementation strategies, the following data were extracted: (1) group development and initiation strategies, (2) where the group was hosted, and (3) barriers and enablers to engagement in support groups.
Qualitative studies were evaluated with the Critical Appraisal Skills Programme (CASP) checklist [
Quantitative studies were appraised with the Risk Of Bias In Non-Randomized Studies of Interventions tool (ROBINS-I) [
A narrative synthesis of findings was conducted because of the heterogeneity in the type of OSG, evaluation measures used, and population and designs of the included studies.
The process of study selection is shown in
Study eligibility flow.
Description of the design, sample size, and aims of the included studies is shown in
Of the 20 included studies, 13 included a qualitative component. On average, studies met 7.4 (out of 10) CASP items. Most did not articulate how interviewer perspectives may have influenced their findings. One study met 3 of the 10 criteria, implying poor methodological quality and inability to confirm the validity of findings [
Design, sample size, and aims of included studies.
References | Countrya | Study design | Sample size/sample volume | Study aim |
Ammerlaan et al [ |
The Netherlands | Prospective feasibility (participant survey) | 12 members | To test the feasibility of the Web-based and face-to-face self-management program |
Bright et al [ |
United Kingdom | Retrospective online participant survey | 152 respondents | To identify the characteristics and motivations of Web-based health information seekers accessing the Web-based health community |
Camerini et al [ |
Switzerland | Retrospective online participant survey | 209 respondents | To evaluate the effectiveness of an internet-based patient education intervention |
Hadert and Rodham [ |
United Kingdom | Retrospective, qualitative, interpretive, phenomenological analysis | 374 members, 1068 posts | To investigate how and why an arthritis Web-based message board was used |
Shigaki et al [ |
United States | Retrospective, qualitative | 30 participants | To evaluate social interactions among individuals with rheumatoid arthritis participating in an empirically based, cognitive-behavioral, self-management, peer support program delivered in a Web-based format |
Smarr et al [ |
United States | Feasibility | 114 members, 448 posts | To describe the Web-based transformation of an empirically validated, clinic-based, self-management program for rheumatoid arthritis |
Smedley et al [ |
United Kingdom | Retrospective qualitative content analysis | 23 members, 223 posts | To explore the experiences of members in a newly launched complex regional pain syndrome discussion forum to examine how support processes become established |
Smedley et al [ |
United Kingdom | Retrospective, qualitative thematic analysis | 59 moderators, 790 posts | To identify and describe the activities performed by Web-based support community moderators |
van Uden-Kraan et al [ |
The Netherlands | Semistructured interviews | 32 participants | To explore if, and in which ways, patients feel empowered by participation in OSGsb |
van Uden-Kraan et al [ |
The Netherlands | Retrospective online participant survey | 528 respondents | To explore if lurkers in Web-based patient support groups profit to the same extent as posters do |
van Uden-Kraan et al [ |
The Netherlands | Retrospective qualitative content analysis | 1500 posts | To explore the extent to which potential disadvantages actually occur when participating in OSGs |
van Uden-Kraan et al [ |
The Netherlands | Retrospective online participant survey | 528 respondents | To explore the extent to which patients feel empowered by their participation in OSGs and what processes occurring in these groups are related to the empowering outcomes |
van Uden-Kraan et al [ |
The Netherlands | Semistructured interviews | 23 Web-masters | To determine the success factors of OSGs for patients and the motives and goals of people who start such groups |
van Uden-Kraan et al [ |
The Netherlands | Prospective participant survey | 679 respondents | To explore factors that facilitate or impede engagement in face-to-face and Web-based peer support |
van der Vaart et al [ |
The Netherlands | Prospective participant survey | 227 respondents | To examine current disease-related internet use and intentions to use various Web-based support services on a hospital-based interactive health communication app of patients with rheumatic diseases |
Walker [ |
United States | Retrospective qualitative content analysis | 292 posts | To explore how a relatively new medium of a disease-specific Facebook group is used to address needs of people affected by thoracic outlet syndrome |
Willis [ |
United States | Retrospective qualitative discourse analysis (ethnomethodology) | 5 members, 8231 posts | To understand how patients with arthritis use Web-based health communities to exchange disease-related information to better manage their chronic disease |
Willis [ |
United States | Retrospective qualitative discourse analysis (ethnomethodology) | 8231 posts | To examine self-efficacy within the computer-mediated communication of 4 Web-based health communities used by people with arthritis |
Willis and Royne [ |
United States | Retrospective quantitative content analysis | 1960 posts | To examine the computer-mediated communication within Web-based health communities for evidence of chronic disease self-management behaviors |
Xing et al [ |
United States | Retrospective content analysis and survival analysis | 100,000 users, 200,000 user posts | To understand how requests for and provisions of informational support by members with different social roles influence members’ continued participation in Web-based health communities |
aOrigin of online support groups when they are multinational.
bOSG: online support group.
Of the 20 included studies, 10 included a quantitative component (
Characteristics of the design and features of the OSGs are described in
Moderation of the OSG was used in 6 studies [
Description of online support groups included for review.
References | Target population | Type of platform | Duration of OSGa | Language | Frequency of posts | Presence/source of moderation |
Ammerlaan et al [ |
Young adults (age 16-25 years) with arthritis | Private website; planned weekly chat group (90 min) | 6 weeks | Dutch | NRb | Yes/peer |
Bright et al [ |
Adults with knee problems | Private website |
1 month | English | NR | No |
Camerini et al [ |
Adults with FMSc | Private website; also included video and textual material on coping | Mean 167 days (SD 67.6) | Italian | NR | No |
Hadert and Rodham [ |
Adults with arthritis | Public website | 3 months | English | NR | No |
Shigaki et al [ |
Adults with RAd | Private website | 10 weeks | English | NR | No |
Smarr et al [ |
Adults with RA | Private website with multiple shared resources (eg, education material and audio files) | Average of 10 weeks | English | NR | Yes/health professional |
Smedley et al [ |
Adults with CRPSe | 4 private forums | 6 months | English | 17=low frequency postersf (average 9.5 posts); 6=high-frequency posters | Yes/peer |
Smedley et al [ |
Adults with arthritis, CRPS, Crohn disease, depression, Huntington disease, and diabetes | 6 public discussion forums | NR | English | 15 posts per moderator | Yes/peer |
van Uden-Kraan et al [ |
Adults with arthritis, FMS, or breast cancer | 9 public websites | NR | Dutch | Posters >1/day=140; 1/day=121; >1/week=96; 1/week=31; 1/month=6; and <1/month=6 | No |
van Uden-Kraan et al [ |
Adults with arthritis, FMS, or breast cancer | 8 public websites | 1 year (range 0-6 years) | Dutch | Minimum=1/day | Yes/peer |
van Uden-Kraan et al [ |
Adults with arthritis, FMS, or breast cancer | 8 public websites | 3 months | Dutch | 1 or 2 messages | No |
van Uden-Kraan et al [ |
Adults with arthritis, FMS, or breast cancer | Public websites | Up to 2.5 years | Dutch | Posters >1/day=146; 1/day=139; >1/week=124; 1/week=50; 1/month=13; and <1/month=13 | No |
van Uden-Kraan et al [ |
Adults with arthritis, FMS, or breast cancer | 10 Public websites, 13 private websites, 18 stand-alone (not embedded in organization website/forum) OSGs, and 5 patient advocacy websites | NR | Dutch | Ranged from a few messages per week to hundreds of messages daily | Yes |
van der Vaart et al [ |
Individuals with rheumatic diagnosis | Private app | NR | Dutch | NR | No |
Walker [ |
Adults with thoracic outlet syndrome | Public; hosted on Facebook | 7 months | English | NR | NR |
Willis [ |
Adults with arthritis | 4 public websites | NR | English | Once every 4 days | No |
Willis [ |
Adults with arthritis | 4 public websites | NR | English | Only high-frequency posters participated | No |
Willis and Royne [ |
Adults with arthritis | 4 public websites | 4 weeks | English | NR | No |
Xing et al [ |
Individuals with (or associated with) FMS | Public website | Up to 6 years | English | Core group members: average of 393 posts; peripheral members: 9.58 posts | Possible |
aOSG: online support group.
bNR: not reported.
cFMS: fibromyalgia.
dRA: rheumatoid arthritis.
eCRPS: complex regional pain syndrome.
fPoster: people who write comments on online support group pages.
Participant characteristics were reported to varying degrees of detail across studies (
Not all participants in each of the OSGs had a musculoskeletal problem (
Characteristics of online support group users.
References | Age (years), mean (range or SD) | Gender (female/male) | Education levels | Occupation | Marital status | Motivation for joining |
Ammerlaan et al [ |
22 (range: 17-25) | 9/1 | Vocational training: 1; advanced vocational training: 7; college/university: 2 | N/Aa | N/A | N/A |
Bright et al [ |
40.1 | 93/59 | Higher education qualifications: 114 | Employed: 87; unemployed: 65 | Cohabiting: 104 | Emotional support (clarity regarding advice and treatments), social support (sharing experiences and information), and condition support (achieving a sense of authority) |
Camerini et al [ |
49 (range: 25-74) | 199/10 | 8 years of schooling: 36; high school/university: 163; not reported: 10 | N/A | N/A | N/A |
Hadert and Rodham [ |
N/A | N/A | N/A | N/A | N/A | Needing to be believed, information exchange, sharing support, and sharing emotions |
Shigaki et al [ |
49.4 (range: 30.1-68.5) | 28/2 | Mean years of education: 15 (range: 12-20) years | N/A | Married: 19 | N/A |
Smarr et al [ |
N/A | N/A | N/A | N/A | N/A | N/A |
Smedley et al [ |
36.6 (range: 20-54)b | 18/5 | N/A | N/A | N/A | N/A |
Smedley et al [ |
N/A | N/A | N/A | N/A | N/A | N/A |
van Uden-Kraan et al [ |
43 (range: 21-75) | 30/2 | Lower: 5; medium: 14; high: 13 | Unemployed/unable to work: 25; employed: 7 | Married/cohabiting: 26; not married: 6 | N/A |
van Uden-Kraan et al [ |
Postersc: 43 (SD 10.4); lurkersd: 47 (SD 9.9) | Posters: 392/27; lurkers: 102/7 | Posters—lower: 129; medium: 170; high: 111. Lurkers—lower: 42; medium: 43; high: 24 | Posters—working >20 hours: 128; working ≤20 hours: 54; unemployed: 234. Lurkers—working >20 hours: 39; working ≤20 hours: 11; unemployed:59 | Posters—in a relationship: 331; single: 88. Lurkers—in a relationship: 85; single: 25 | N/A |
van Uden-Kraan et al [ |
38 (range: 21-65) | 293/29; unknown: 25 | N/A | N/A | N/A | N/A |
van Uden-Kraan et al [ |
44 (range: 17-75) | 494/34 | Lower: 171; medium: 213; high: 135 | Working >20 hours: 167; working ≤20 hours: 65; unemployed: 293 | In a relationship: 415; single: 113 | N/A |
van Uden-Kraan et al [ |
46 (range: 24-65) | 20/3 | N/A | N/A | N/A | Provide information and social support |
van Uden-Kraan et al [ |
54 (range: 18-75) | 571/106 | Lower: 404; medium: 176; high: 94 | Employed: 212; unemployed: 447 | Married/cohabiting: 530; single: 128 | Improve mental health and past behaviors with support groups |
van der Vaart et al [ |
52 (SD 11) | 143/84 | Lower: 61; average: 116; high: 46; unknown: 4 | Employed: 119; unemployed: 106 | Married/cohabiting: 183; single: 42; unknown: 2 | Poor mental health and improving health literacye |
Walker [ |
N/A | N/A | N/A | N/A | N/A | N/A |
Willis [ |
Range: 21-83 | 15/5 | N/A | N/A | N/A | N/A |
Willis [ |
Range: 21-83 | 15/5 | N/A | N/A | N/A | N/A |
Willis and Royne [ |
N/A | N/A | N/A | N/A | N/A | N/A |
Xing et al [ |
N/A | N/A | N/A | N/A | N/A | N/A |
aN/A: not applicable.
bAge was available for 9 participants, and the duration of symptoms was available for 14 participants.
cPoster: people who write comments on online support group pages.
dLurker: people who read material without contributing posts to the forum.
ePeople with good health literacy were more likely to use peer support services to further improve knowledge.
Overall, 10 studies reported on measures of effectiveness from OSGs [
Themes and processes of developing social activity, empowerment, self-management, and health literacy were explored by 4 studies using qualitative study designs [
When quantifying the effectiveness of OSG participation, participants with arthritis aged 25 years or younger reported high levels (mean 8.4, range: 6-10) of satisfaction with goal attainment, using a 10-point numerical rating scale [
Overall, 7 studies [
One study reported that a key component of OSGs was to continually promote the group and keep it alive, which took considerable time and energy [
Member engagement, or staying in the OSG, was significantly associated with starting or contributing to threads and requesting information. Xing et al [
This systematic review has revealed that the design features and implementation strategies used by peer-to-peer OSGs for people with chronic musculoskeletal disorders vary widely. People across a broad demographic spectrum access OSGs; some people chose to post actively, whereas others take a passive approach. Self-efficacy, health literacy, and empowerment are the constructs most commonly explored in studies investigating the effectiveness of musculoskeletal-focused OSGs. Overall, the findings stimulate discussion around optimal design and implementation of OSGs as well as how their effectiveness might best be measured. These topics are recommended for future investigation, particularly for people with chronic musculoskeletal disorders.
For individuals with chronic musculoskeletal disorders, accessibility to OSGs is not influenced by whether the group is publicly or privately hosted. On the basis of the available literature, this also seems to be the case for OSGs focused on individuals with opioid addiction [
When examining the characteristics of OSG members included in this review, the majority of musculoskeletal-focused OSG members were female, not currently in full-time employment, and cohabitating or married. There is a significant association between exhibiting a preference for Web-based communication and the duration of internet usage [
In evaluating OSG effectiveness, this review found that studies focused on constructs such as empowerment, self-efficacy, confidence, social support, and knowledge. These outcomes are consistent with those reported across multiple OSGs [
One potential implementation method to promote active posting among OSG participants is the presence of a professional moderator [
Additional implementation strategies that were investigated by studies included in this review were pretesting of OSGs before wider release, embedding the OSG in familiar websites, and scheduling weekly events or homework. No study investigated or reported the effectiveness of these strategies. Having identified these implementation strategies, a recommended topic for future research would be comparing the success of such implementation strategies with respect to consumer engagement and efficacy.
There are limitations that need to be considered when interpreting the findings of this review. The main limitation is that the health disorders of interest in several included studies were diverse, and in some cases, it was not possible to identify which data came from individuals with musculoskeletal disorders. There were 6 studies [
OSGs provide an opportunity for individuals with musculoskeletal disorders to support one another through the sharing of knowledge and experiences. Across the diverse range of designs, languages, included features, and delivery platforms, OSGs attract participation from people of all ages and education levels, although predominantly females. The level to which group members participate appears to be related to their perceived benefit in health literacy and empowerment. However, the lack of control groups in studies means that direct inferences cannot be assessed or established. Participation may be increased by strategies such as moderation or input by a health professional or expert peers, homework tasks, and scheduled weekly chats. Whether these strategies are effective requires further investigation.
Search strategy built and conducted in PubMed.
Results of the quality assessment of qualitative study methods using the Critical Appraisal Skills Programme criteria.
Risk Of Bias In Non-Randomized Studies of Interventions for quantitative design studies.
Themes and magnitude of measure used to investigate the effectiveness of online support groups.
Critical Appraisal Skills Programme
National Health and Medical Research Council
online support group
Risk Of Bias In Non-Randomized Studies of Interventions
Funding for this study was provided by a Program Grant (APP1091302) and Centre of Research Excellence Grant (APP1079078) from the National Health and Medical Research Council (NHMRC) of Australia. DH, KB, and PH (APP1102905) are supported by fellowships from the NHMRC.
DH provides consulting advice to Merck Serono, TLCBio, Pfizer, and Eli Lilly and company.