Values, preferences, and informational needs of individuals living with ANCA-associated vasculitis: a systematic review

Abstract Objectives ANCA-associated vasculitis (AAV) is associated with a marked health burden and uncertainties across multiple treatment options. We aimed to complete a systematic review of previous research concerning individualvalues, preferences, and informational needs in AAV to inform efforts to facilitate shared decision-making that can help manage this uncertainty. Methods We conducted a qualitative systematic review with thematic synthesis of studies assessing values and preferences of individuals with AAV. We searched CENTRAL, Medline, EMBASE, PsychInfo, HealthStar, CINAHL, and three health decision databases for studies that assessed values, preferences, the utility of a decision aid, and/or unmet informational needs for adults with AAV on August 27, 2024. The thematic synthesis approach guided our analysis. Risk of bias was assessed using the CASP tool for qualitative studies and the ROBVALU tool for quantitative studies. Results We identified 1038 abstracts and included 18 studies. Seven qualitative studies included at least 177 individuals; the 11 quantitative studies included 1727 individuals. Three themes emerged: ‘living with AAV,’ focusing on self-management needs and living within a supportive environment; ‘information exchange,’ focusing on effective sharing of information and methods of information sharing; and ‘treatment of AAV,’ focusing on preferences and experiences regarding the benefits and harms of therapy. We did not find any studies on values and preferences regarding therapies aside from glucocorticoids and plasma exchange. Discussion AAV affects many aspects of lives of individuals living with it, raising multiple issues around values, preferences, and informational needs. Understanding these common concerns can improve care for individuals with AAV and facilitate shared decision-making. PROSPERO CRD420250574403