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[Transition process from paediatric to adult care in patients with inborn errors of metabolism. Consensus statement]
Jordi Pérez-López1, Leticia Ceberio-Hualde2, José Salvador García Morillo3
1Errores Congénitos del Metabolismo del Adulto, Unidad de Enfermedades Minoritarias, Hospital Universitario Vall d'Hebron, CSUR de Errores Congénitos del Metabolismo, Grupo de Trabajo de Enfermedades Minoritarias de la SEMI, Barcelona, España.
Insights
Successful healthcare transition for children with inborn errors of metabolism (IEM) to adult care requires clear guidelines. This study provides recommendations for managing these chronic conditions during the critical transition period.
Area of Science:
- Pediatric Endocrinology
- Internal Medicine
- Metabolic Disorders
Background:
- Growing number of patients with inborn errors of metabolism (IEM) surviving into adulthood.
- Need for specialized care transition from pediatric to adult healthcare settings.
- Challenges in managing chronic childhood-onset diseases in adults.
Framework:
- Bibliographic review and expert consensus methodology.
- Development of action guidelines for healthcare professionals.
- Focus on successful transition of care for IEM patients.
Implementation:
- Recommendations for clinical management of IEM patients during transition.
- Addressing the unique needs of IEM patients in adult care.
- Facilitating interdisciplinary collaboration between pediatric and adult care teams.
Implications:
- Improved quality of care for adult patients with IEM.
- Enhanced role of internal medicine physicians in managing complex chronic conditions.
- Strategies to optimize patient outcomes and healthcare experiences during transition.
Background And Objective:
The transition process from paediatric to adult care is a subject of great interest in recent years, especially in chronic diseases with childhood onset, such as inborn errors of metabolism (IEM). Advances in diagnosis and treatment of these diseases have improved their prognosis, with a high number of patients with IEM who currently reach adult age and need to be attended to by non-paediatric professionals. The objective of this work is to establish action guidelines so that the specialists involved can guarantee a successful transition of these patients' healthcare.
Methodology:
After carrying out a bibliographic review of the subject, the authors, beginning with their own experience, produced an initial document which was subjected to successive debates until the final document was obtained. The consensus recommendation was decided by the majority in case of criterion discrepancy.
Results:
A series of recommendations are presented for the best clinical management of the transitions of care of patients with IEM from the paediatric to adult care setting in order to achieve the best results in this process given the special characteristics of this patient subgroup and the main difficulties entailed in the transition process.
Conclusions:
The role of the internal medicine doctor in this transition process and correct interrelation with the paediatric and social setting is stressed. Furthermore, actions and attitudes are suggested to improve the quality of said transition.
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