Perceptions and experiences of individuals at-risk of rheumatoid arthritis (RA) knowing about their risk of developing RA and being offered preventive treatment: systematic review and thematic synthesis of qualitative studies

Heidi J. Siddle, Lara Chapman, Kulveer Mankia, Codruța Zăbălan, Marios Kouloumas, Karim Raza, M Falahee, Joel Kerry, Andreas Kerschbaumer, Daniel Aletaha, Paul Emery, Suzanne Richards

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Abstract

Objective: There is increasing interest in identifying individuals at-risk of rheumatoid arthritis (RA) and initiating early treatment to prevent or delay the onset of arthritis. We aimed to describe the perceptions and experiences of at-risk individuals, to inform the conduct of clinical trials and studies, and inform clinical practice.

Methods: A systematic review and thematic synthesis of qualitative studies was conducted. Two review authors independently screened studies for inclusion, appraised their methodological quality using the Critical Appraisal Skills Programme checklist and assessed confidence in the findings using the Grading of Recommendations Assessment, Development and Evaluation Confidence in Evidence from Reviews of Qualitative research approach.

Results: Seven studies involving 115 individuals at-risk of developing RA were included. Three major themes (seven sub-themes) were identified: understanding the risk of developing RA (knowledge of RA, identification of potential risk factors); preventive interventions to reduce the risk of developing RA (understanding the value and role of preventive interventions, engagement with preventive interventions); and perceptions of predictive testing for RA (benefits of predictive testing, decision to undertake predictive testing, concerns about predictive testing). Moderate confidence in most review findings was evident.

Conclusion: Whilst there are clear benefits in informing individuals at-risk of RA about their risk following predictive testing and offering preventive treatment, there are potential barriers to engagement, intensified by the burden of uncertainty. Identification of the optimum approaches for presenting risk information, including the risks and benefits of engaging with preventive interventions, is urgently needed to support individuals at-risk of RA in their decision-making.

PROSPERO registration number: CRD42021236034.
Original languageEnglish
JournalAnnals of the Rheumatic Diseases
Early online date8 Nov 2021
DOIs
Publication statusE-pub ahead of print - 8 Nov 2021

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