Quality of life of non-HIV-associated lipodystrophy syndromes patients: A systematic review

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Background Non-HIV-lipodystrophy syndromes (LS) are rare diseases characterized by a partial or total loss of adipose tissue and are associated with significant cardiometabolic, morphological, and reproductive complications. Quality of life (QoL) in LS has recently gained attention in clinical research and practice. Objectives To summarize the impact of LS on patients’ QoL, to identify interventions to improve QoL, and to describe the tools used to assess it. Methods A literature search was conducted in PubMed, Embase, Cochrane, CINAHL, and Web of Science for English or French articles, published between 1990 and 2025. Two authors independently screened records, and discrepancies were resolved by a third author. Data were extracted using a standardized form. Narrative synthesis will be performed, and risk of bias will be assessed using the Joanna Briggs Institute tools. Preliminary results From 4271 records, 10 studies met the inclusion criteria (3 cohort, 3 cross-sectional, 1 case-control and 3 qualitative studies). Overall health-related QoL was impaired in LS patients compared to the general population ( n = 3). Mental health outcomes revealed frequent anxiety, depression, negative self-perception and unmet mental needs ( n = 6). Social impairments included limited work/school access, isolation and discrimination ( n = 4). Pain and fatigue were described as chronic and severe ( n = 5). Body image dissatisfaction was reported in nearly all studies ( n = 9), often associated with stigmatization. Sexual health was addressed in only one study, with 42% reporting severe dissatisfaction ( n = 1). Perspectives LS has a multidimensional impact on patients’ QoL. Data synthesis and risk of bias assessment are ongoing to complete this study.