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hrp0097p2-176 | Bone, Growth Plate and Mineral Metabolism | ESPE2023

A patient-centred and multi-stakeholder co-designed, mixed methods, observational, prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphatemia (XLH)

Saraff Vrinda , Arango-Sancho Pedro , Bacchetta Justine , M. Boot Annemieke , P. Burren Christine , Chinoy Amish , Dharmaraj Poonam , David González-Rodríguez Juan , Gueorguieva Iva , Hayes Wesley , Linglart Agnès , Amelia Gómez Llorente Maria , Ríos Héctor , Schnabel Dirk , Harvengt Pol , M.A. Bailey Karen , Glen Fiona , J. Rylands Angela , Williams Angela , Haf Davies Elin

Background: XLH is a rare, genetic, life-long disease caused by PHEX pathogenic variants. It is associated with progressive accumulation of musculoskeletal features and symptoms that evolve across the patient’s lifetime if untreated. Although the disease is well characterised in children and adults, there are limited data describing the health outcomes and experiences of adolescents, particularly at end of skeletal growth (EOSG), a crucial phase during t...

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A patient-centred and multi-stakeholder co-designed, mixed methods, observational, prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphatemia (XLH)

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