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Chronic pain has a strong impact on quality of life in facioscapulohumeral muscular dystrophy
Author(s) -
Morís Germán,
Wood Libby,
FernáNdezTorrón Roberto,
González Coraspe José Andrés,
Turner Chris,
HiltonJones David,
Norwood Fiona,
Willis Tracey,
Parton Matt,
Rogers Mark,
Hammans Simon,
Roberts Mark,
Househam Elizabeth,
Williams Maggie,
Lochmüller Hanns,
Evangelista Teresinha
Publication year - 2018
Publication title -
muscle and nerve
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.025
H-Index - 145
eISSN - 1097-4598
pISSN - 0148-639X
DOI - 10.1002/mus.25991
Subject(s) - medicine , facioscapulohumeral muscular dystrophy , shoulders , quality of life (healthcare) , chronic pain , physical therapy , muscular dystrophy , disease , neuromuscular disease , dystrophy , physical medicine and rehabilitation , surgery , pathology , nursing
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 analyzed patient reported outcome measures collected through the U.K. 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. A total of 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 Individualised Neuromuscular Quality of Life Questionnaire 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. Muscle Nerve 57 : 380–387, 2018