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✅   Healthcare needs, care use and health status outcomes in adults with Bardet-Biedl syndrome: a cross-sectional study in Norway

Health

Objectives This study aimed to determine healthcare needs and care use (provision of healthcare) in adults with Bardet–Biedl syndrome (BBS) and the associations between care use and physical functioning, health status outcomes and distress. Design Cross-sectional study. Setting Outpatient hospital visits. Participants 30 adults with BBS were included (50% women, aged 20–69 years) and assessed with the Needs and Provision Complexity Scale, Short Physical Performance Battery, EuroQoL five dimensions with five severity levels (EQ-5D-5L) and Hospital Anxiety and Depression Scale. Results The majority (80%) received disability benefits, 93% were overweight or obese and all had retinal dystrophy.

BMJ     Apr 28, 2025