A research study using data from the UK Facioscapulohumeral muscular dystrophy (FSHD) Patient Registry has been published recently. The registry is funded by Muscular Dystrophy UK.
The study investigated the impact of pain on the quality of life (QoL) of people with FSHD. Registry participants were invited to fill out a questionnaire, without any input from their clinician. This sort of information is referred to as patient-reported outcome measures (PROMs).
The results showed that pain in FSHD is frequent and strongly impacts on QoL. Out of 339 participants, about 86% reported experiencing pain to some degree. This was mainly localised in the shoulders and lower back. Medication to manage pain was taken by over 90% of patients. These findings highlight the importance of pain management and will help to improve the care of FSHD patients.
You can read more about these results in this summary, which was kindly put together by the registry co-ordinator in Newcastle, Phil Cammish. If you have any questions about this study or the UK FSHD Patient Registry, please get in touch with Phil by emailing email@example.com