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Papers of the Week

2022 Dec 17

Orphanet J Rare Dis



A multidisciplinary care pathway improves quality of life and reduces pain in patients with fibrous dysplasia/McCune-Albright syndrome: a multicenter prospective observational study.


Meier ME, Hagelstein-Rotman M, van de Ven AC, Van der Geest ICM, Donker O, Pichardo SEC, Hissink Muller PCE, van der Meeren SW, Dorleijn DMJ, Winter EM, van de Sande MAJ, Appelman-Dijkstra NM
Orphanet J Rare Dis. 2022 Dec 17; 17(1):439.
PMID: 36528764.


Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) may cause pain, impaired ambulation and decreased quality of life (QoL). International guidelines advocate management of FD/MAS in a tertiary multidisciplinary care pathway, but no longitudinal data are available to support this recommendation. This multicenter prospective observational study aimed to evaluate effects of 1 year of treatment in the FD/MAS care pathway in 2 tertiary clinics on QoL and pain, assessed by change in Short Form 36 and Brief Pain Inventory between baseline and follow-up. Patients completing baseline questionnaires < 1 year after intake were classified as new referrals, others as under chronic care.