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

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

Abstract Background 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...

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Bibliographic Details
Main Authors: Maartje E. Meier, Marlous Hagelstein-Rotman, Annenienke C. van de Ven, Ingrid C. M. Van der Geest, Olav Donker, Sarina E. C. Pichardo, Petra C. E. Hissink Muller, Stijn W. van der Meeren, Desirée M. J. Dorleijn, Elizabeth M. Winter, Michiel A. J. van de Sande, Natasha M. Appelman-Dijkstra
Format: Article
Language:English
Published: BMC 2022-12-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Fibrous dysplasia
McCune-Albright syndrome
Rare bone disease
Care pathway
Multidisciplinary care
Tertiary referral hospital
Online Access:https://doi.org/10.1186/s13023-022-02588-z

Internet

https://doi.org/10.1186/s13023-022-02588-z

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