RESUMO
Improving self-management in individuals with inflammatory arthritis (IA) is crucial for effective disease management. However, current recommendations primarily focus on interventions for the diagnosed individuals, overlooking the potential impact of their significant others on their self-management abilities. This review aims to fill this gap by identifying and mapping relevant research employing both qualitative and quantitative design to provide a broader understanding of the potential of significant others in relation to IA management. We examined studies published from 2007 to 2024 that explore our research questions using electronic databases and grey literature searches. Two independent reviewers meticulously screened and categorized the studies based on a developed framework employing basic content analysis. Out of 20.925 studies, 43 were included: 22 quantitative studies (including 1 educational trial), 20 qualitative studies, and 1 mixed-methods study. Our analysis of the included studies revealed that significant others predominantly provided practical and emotional support and could positively or negatively influence the person with IAs self-management abilities. Additionally, significant others reported their own feelings of emotional distress and expressed the need for knowledge, skills and social support enabling them to provide better support while taking care of them self. Greater focus on the significant others of those diagnosed with IA in their provision of support to this patient group may both improve the people with IA self-management skills and address significant others' reported needs. Future studies should explore the impact of such initiatives through randomized controlled trials.
RESUMO
OBJECTIVE: Evaluating the effect of self-management interventions targeting people with inflammatory arthritis (IA) is a challenge because self-management interventions are complex and consensus on important outcomes is lacking. The aim is to identify, and map applied outcome domains and outcome measurement instruments from previous trials measuring the effect of self-management interventions targeting people with IA. METHOD: We performed an informative systematic literature review following guidance from the 'Outcome Measures in Rheumatology' (OMERACT) and 'Core Outcome Measures in Effectiveness Trials' (COMET) initiatives. Trials describing their experimental intervention as "self-management" applied in people diagnosed with any IA were included. Information on outcome domains and the corresponding measurement instruments were extracted, sorted, and categorized in domains and sub-domains. RESULTS: From a total of 2,502 records, we included 38 trials published between 1988 and 2021. We identified 12 different outcome domains, covering 39 subdomains, collected with 119 different measurement instruments. The most frequently applied outcome domains were self-efficacy, pain, physical functioning/disability, anxiety and depression, quality of life, fatigue, global assessment/disease activity and coping. The applied measurement instruments varied within each outcome domain and were predominantly patient-reported outcomes. CONCLUSION: The outcome domains and measurement instruments used in self-management trials were widely diverse and differ from the current general OMERACT Core Outcome Sets (COS) for IA conditions. Further steps towards the establishment of a COS to be reported in all self-management intervention trials will enhance the relevance and the subsequent impact on the body of evidence from these trials.
