Transition of patients with metabolic bone disease from paediatric to adult healthcare services: current situation and proposals for improvement

Orphanet Journal of Rare Diseases

Research

Carlos Gómez-Alonso¹  José Vicente Torregrosa²  José Jesús Broseta-Monzó²  Pedro Arango-Sancho³  Sara Chocrón-de-Benzaquen⁴  Guillem Pintos-Morell⁵  Begoña Soler-López⁶  Yoko Olmedilla-Ishishi⁷  Ana Coral Barreda-Bonis⁸  Rosa Bou-Torrent⁹  Enrique Casado^1,10 

[1] Bone and Mineral Metabolism Clinical Management Unit, Hospital Universitario Central de Asturias, Oviedo, Spain;Department of Nephrology and Renal Transplant, Hospital Clínic de Barcelona, Barcelona, Spain;Department of Paediatric Nephrology, Hospital Sant Joan de Déu, Barcelona, Spain;Department of Paediatric Nephrology, Hospital Universitario Vall d’Hebron, Barcelona, Spain;Hereditary Metabolic Diseases, Hospital Universitario Vall d’Hebron, Barcelona, Spain;Medical Department, E-C-BIO, S.L., c/Rosa de Lima, 1, Edificio ALBA, Office 016, 28230, Las Rozas, Madrid, Spain;Medical Department, Kyowa Kirin Farmacéutica, S.L., Madrid, Spain;Paediatric Endocrinology Department, Hospital Universitario la Paz, Madrid, Spain;Paediatric Rheumatology Unit, Hospital Sant Joan de Déu, Barcelona, Spain;Rheumatology Department, Hospital Universitario Parc Taulí, Sabadell, Barcelona, Spain;

关键词: Transitional care;    Paediatric;    Metabolic bone disease;    X-linked hypophosphataemia (XLH);   

DOI  :  10.1186/s13023-023-02856-6

 received in 2022-07-15, accepted in 2023-08-20,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundThere are currently no models for the transition of patients with metabolic bone diseases (MBDs) from paediatric to adult care. The aim of this project was to analyse information on the experience of physicians in the transition of these patients in Spain, and to draw up consensus recommendations with the specialists involved in their treatment and follow-up.MethodsThe project was carried out by a group of experts in MBDs and included a systematic review of the literature for the identification of critical points in the transition process. This was used to develop a questionnaire with a total of 48 questions that would determine the degree of consensus on: (a) the rationale for a transition programme and the optimal time for the patient to start the transition process; (b) transition models and plans; (c) the information that should be specified in the transition plan; and (d) the documentation to be created and the training required. Recommendations and a practical algorithm were developed using the findings. The project was endorsed by eight scientific societies.ResultsA total of 86 physicians from 53 Spanish hospitals participated. Consensus was reached on 45 of the 48 statements. There was no agreement that the age of 12 years was an appropriate and feasible point at which to initiate the transition in patients with MBD, nor that a gradual transition model could reasonably be implemented in their own hospital. According to the participants, the main barriers for successful transition in Spain today are lack of resources and lack of coordination between paediatric and adult units.ConclusionsThe TEAM Project gives an overview of the transition of paediatric MBD patients to adult care in Spain and provides practical recommendations for its implementation.

【 授权许可】

CC BY   
© Institut National de la Santé et de la Recherche Médicale (INSERM) 2023

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