Orphanet Journal of Rare Diseases (Aug 2023)

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

  • Enrique Casado,
  • Carlos Gómez-Alonso,
  • Guillem Pintos-Morell,
  • Rosa Bou-Torrent,
  • Ana Coral Barreda-Bonis,
  • José Vicente Torregrosa,
  • José Jesús Broseta-Monzó,
  • Pedro Arango-Sancho,
  • Sara Chocrón-de-Benzaquen,
  • Yoko Olmedilla-Ishishi,
  • Begoña Soler-López

DOI
https://doi.org/10.1186/s13023-023-02856-6
Journal volume & issue
Vol. 18, no. 1
pp. 1 – 15

Abstract

Read online

Abstract Background There 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. Methods The 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. Results A 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. Conclusions The TEAM Project gives an overview of the transition of paediatric MBD patients to adult care in Spain and provides practical recommendations for its implementation.

Keywords