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      Design, Delivery, Maintenance, and Outcomes of Peer-to-Peer Online Support Groups for People With Chronic Musculoskeletal Disorders: Systematic Review

      review-article
      , PhD 1 , , PhD 2 , , , PhD 3 ,   , PhD 3 , , PhD 1 , , PhD 1 , , MSc 1 , , MSc 1 , , MHSc 3 , , PhD 4 , 5 , , PhD 1 , , BSc 6 , , PhD 4 , 5 , , DSC, MedDr, PhD 1 , , MD, PhD 4 , 5 , , PhD 1 , , PhD 3
      (Reviewer), (Reviewer), (Reviewer), (Reviewer)
      Journal of Medical Internet Research
      JMIR Publications
      social support, musculoskeletal diseases, online social networking, empowerment

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          Abstract

          Background

          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.

          Objective

          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.

          Methods

          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.

          Results

          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.

          Conclusions

          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.

          Trial Registration

          PROSPERO International Prospective Register of Systematic Reviews CRD42018090326; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018090326

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          Most cited references30

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          The influence of social support on chronic illness self-management: a review and directions for research.

          A review of the empirical literature examining the relationship between social support and chronic illness self-management identified 29 articles, of which 22 were quantitative and 7 were qualitative. The majority of research in this area concerns diabetes self-management, with a few studies examining asthma, heart disease, and epilepsy management. Taken together, these studies provide evidence for a modest positive relationship between social support and chronic illness self-management, especially for diabetes. Dietary behavior appears to be particularly susceptible to social influences. In addition, social network members have potentially important negative influences on self-management There is a need to elucidate the underlying mechanisms by which support influences self-management and to examine whether this relationship varies by illness, type of support, and behavior. There is also a need to understand how the social environment may influence self-management in ways other than the provision of social support
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            “Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain

            Background Despite the large body of research on sex differences in pain, there is a lack of knowledge about the influence of gender in the patient-provider encounter. The purpose of this study was to review literature on gendered norms about men and women with pain and gender bias in the treatment of pain. The second aim was to analyze the results guided by the theoretical concepts of hegemonic masculinity and andronormativity. Methods A literature search of databases was conducted. A total of 77 articles met the inclusion criteria. The included articles were analyzed qualitatively, with an integrative approach. Results The included studies demonstrated a variety of gendered norms about men's and women's experience and expression of pain, their identity, lifestyle, and coping style. Gender bias in pain treatment was identified, as part of the patient-provider encounter and the professional's treatment decisions. It was discussed how gendered norms are consolidated by hegemonic masculinity and andronormativity. Conclusions Awareness about gendered norms is important, both in research and clinical practice, in order to counteract gender bias in health care and to support health-care professionals in providing more equitable care that is more capable to meet the need of all patients, men and women.
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              Fibromyalgia diagnosis and biased assessment: Sex, prevalence and bias

              Purpose Multiple clinical and epidemiological studies have provided estimates of fibromyalgia prevalence and sex ratio, but different criteria sets and methodology, as well as bias, have led to widely varying (0.4%->11%) estimates of prevalence and female predominance (>90% to <61%). In general, studies have failed to distinguish Criteria based fibromyalgia (CritFM) from Clinical fibromyalgia (ClinFM). In the current study we compare CritFM with ClinFM to investigate gender and other biases in the diagnosis of fibromyalgia. Methods We used a rheumatic disease databank and 2016 fibromyalgia criteria to study prevalence and sex ratios in a selection biased sample of 1761 referred and diagnosed fibromyalgia patients and in an unbiased sample of 4342 patients with no diagnosis with respect to fibromyalgia. We compared diagnostic and clinical variables according to gender, and we reanalyzed a German population study (GPS) (n = 2435) using revised 2016 criteria for fibromyalgia. Results In the selection-biased sample of referred patients with fibromyalgia, more than 90% were women. However, when an unselected sample of rheumatoid arthritis (RA) patients was studied for the presence of fibromyalgia, women represented 58.7% of fibromyalgia cases. Women had slightly more symptoms than men, including generalized pain (36.8% vs. 32.4%), count of 37 symptoms (4.7 vs. 3.7) and mean polysymptomatic distress scores (10.2 vs. 8.2). We also found a linear relation between the probability of being females and fibromyalgia and fibromyalgia severity. Women in the GPS represented 59.2% of cases. Discussion The perception of fibromyalgia as almost exclusively (≥90%) a women’s disorder is not supported by data in unbiased studies. Using validated self-report criteria and unbiased selection, the female proportion of fibromyalgia cases was ≤60% in the unbiased studies, and the observed CritFM prevalence of fibromyalgia in the GPS was ~2%. ClinFM is the public face of fibromyalgia, but is severely affected by selection and confirmation bias in the clinic and publications, underestimating men with fibromyalgia and overestimating women. We recommend the use of 2016 fibromyalgia criteria for clinical diagnosis and epidemiology because of its updated scoring and generalized pain requirement. Fibromyalgia and generalized pain positivity, widespread pain (WPI), symptom severity scale (SSS) and polysymptomatic distress (PSD) scale should always be reported.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                1439-4456
                1438-8871
                April 2020
                24 April 2020
                : 22
                : 4
                : e15822
                Affiliations
                [1 ] The School of Health and Rehabilitation Sciences The University of Queensland Brisbane Australia
                [2 ] Faculty of Medicine and Health Sciences Macquarie University Sydney Australia
                [3 ] Centre for Health, Exercise & Sports Medicine Department of Physiotherapy The University of Melbourne Melbourne Australia
                [4 ] Faculty of Medicine and Health, University of Sydney Kolling Institute of Medical Research Institute of Bone and Joint Research Sydney Australia
                [5 ] Department of Rheumatology Royal North Shore Hospital Sydney Australia
                [6 ] Sax Institute Sydney Australia
                Author notes
                Corresponding Author: Kathryn Mills Kathryn.mills@ 123456mq.edu.au
                Author information
                https://orcid.org/0000-0002-2704-9897
                https://orcid.org/0000-0002-0360-733X
                https://orcid.org/0000-0002-0392-6058
                https://orcid.org/0000-0003-4751-7624
                https://orcid.org/0000-0002-1946-4492
                https://orcid.org/0000-0001-9641-9217
                https://orcid.org/0000-0001-8902-7434
                https://orcid.org/0000-0001-8880-4561
                https://orcid.org/0000-0003-1657-1820
                https://orcid.org/0000-0002-1625-8490
                https://orcid.org/0000-0001-8198-5291
                https://orcid.org/0000-0003-4742-4401
                https://orcid.org/0000-0003-2587-1649
                https://orcid.org/0000-0002-1206-9107
                https://orcid.org/0000-0003-3197-752X
                https://orcid.org/0000-0003-0253-5933
                https://orcid.org/0000-0003-4982-5639
                Article
                v22i4e15822
                10.2196/15822
                7210497
                32329746
                689403f8-533d-4eba-b1e8-92bccf89c000
                ©Liam R Maclachlan, Kathryn Mills, Belinda J Lawford, Thorlene Egerton, Jenny Setchell, Leanne M Hall, Melanie L Plinsinga, Manuela Besomi, Pek Ling Teo, Jillian P Eyles, Rebecca Mellor, Luciano Melo, Sarah Robbins, Paul W Hodges, David J Hunter, Bill Vicenzino, Kim L Bennell. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 24.04.2020.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                History
                : 9 August 2019
                : 2 October 2019
                : 27 November 2019
                : 2 February 2020
                Categories
                Review
                Review

                Medicine
                social support,musculoskeletal diseases,online social networking,empowerment
                Medicine
                social support, musculoskeletal diseases, online social networking, empowerment

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