Morís, G., Wood, L., Fernández-Torrón, R., González Coraspe, J. A., Turner, C., Hilton-Jones, D., Norwood, F., Willis, T., Parton, M., Rogers, M., Hammans, S., Roberts, M., Househam, E., Williams, M., Lochmüller, H. and Evangelista, T.
Muscle & Nerve,
Introduction: Earlier small case series and clinical observations reported on chronic pain playing an important role in facioscapulohumeral dystrophy (FSHD). The aim of this study was to determine the characteristics and impact of pain on quality of life (QoL) in patients with FSHD.
Methods: We analysed patient reported outcome measures collected through the UK FSHD Patient Registry.
Results: Of 398 patients, 88.6% reported pain at the time of study. The most frequent locations were shoulders and lower back. 203 participants reported chronic pain, 30.4% of them as severe. The overall disease impact on QoL was significantly higher in patients with early onset and long disease duration. Chronic pain had a negative impact on all INQoL domains and overall disease score.
Discussion: Our study shows that pain in FSHD type 1 (FSHD1) is frequent and strongly impacts on QoL, similar to other chronic, painful disorders. Management of pain should be considered when treating FSHD1 patients. This article is protected by copyright. All rights reserved.