Quality of life and costs of care for FSHD patients: a UK survey

<h3>Introduction</h3> Facioscapulohumeral dystrophy (FSHD) is the third most common muscle disease, affecting around 3000 people in the UK. Our study investigated the challenges UK patients face in accessing health and social care, health related quality of life (HRQL) and associated costs of care. <h3>Methods</h3> We distributed an online survey via the UK FSHD patient registry. HRQoL was assessed with EQ-5D-5L. Likert scales assessed respondents’ experience of access to services. Costs were calculated using appointment type and frequency. <h3>Results</h3> We received 212 responses from all regions of the UK. After Neurology, Physiotherapy was most accessed healthcare service. Respondents were severely impacted by their condition, 48% of respondents reported wheelchair usage, and 57% reported receiving care input. Median EQ-5D-5L score was 0.51 (compared to zero for death and 1.0 for full health). Mean annual health and social care cost per respondent was £22,964. Increased disease severity correlated with increased health and social care costs (Spearman’s rho = 0.551 p &lt;0.001), and HRQoL (Spearman’s rho = -0.661 p&lt;0.001). <h3>Conclusion</h3> FSHD leads to significant disability and socioeconomic burden. Therapies which alter disease progression could lead to improved HRQoL for patients with FSHD.