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Growing older: the adult metabolic clinic
1Charles Dent Metabolic Unit, The National Hospital for Neurology and Neurosurgery, London, UK. philip.lee@uclh.org
Insights
Children with inherited metabolic diseases are living longer, requiring specialized adult care. Transitioning care from pediatrics to adult services is crucial for managing complex, lifelong health needs and ensuring continued well-being.
Area of Science:
- Metabolic Disorders
- Genetics
- Pediatrics & Adult Medicine
Background:
- Advances in diagnostics and therapeutics have increased survival rates for children with inherited metabolic diseases into adulthood.
- Adult patients often present with complex, multisystem health issues necessitating long-term, specialized care.
- Limited awareness among adult medical professionals poses a risk to the continuity and quality of care for these individuals.
Purpose of the Study:
- To highlight the growing challenge of managing adults with inborn errors of metabolism.
- To emphasize the need for specialized adult services and seamless transition from pediatric care.
- To discuss essential components for effective adult inborn errors of metabolism services.
Main Methods:
- Review of clinical experience from a dedicated adult and adolescent inborn errors of metabolism center.
- Discussion of the multidisciplinary requirements for adult metabolic care.
- Analysis of the transition process from pediatric to adult healthcare settings.
Main Results:
- A growing population of individuals with inherited metabolic diseases requires ongoing adult medical management.
- Paediatricians often continue care into adulthood, bridging a gap in specialized services.
- Effective adult services require integration with pediatric units, adult specialties, and laboratory support.
Conclusions:
- Specialized adult services are essential to manage the complex, long-term needs of individuals with inborn errors of metabolism.
- Adequate resources and trained personnel are critical for successful transition and ongoing care.
- Integrated, multidisciplinary adult metabolic services are vital to prevent loss of progress made in childhood care.
Abstract:
Improvements in screening programmes, diagnostic tests and therapeutic interventions have all led to increasing numbers of children with inherited metabolic diseases surviving through childhood into adolescence and adulthood. These individuals are often able to integrate into society, but many have complex, multisystem problems that require ongoing care. Understanding of the long-term outcome of these disorders is scanty. Awareness of these conditions within the adult medical community is sadly limited and much of the good work of the paediatricians potentially could go to waste. This is often prevented by paediatricians remaining involved in patient care into the third decade and beyond. Appropriate resources to deal with the transition from the children's services to the adult sector are necessary, and appropriately trained medical and dietetic personnel are required to run these services. An adult inborn errors service needs to have close links with a feeding paediatric unit, as well as to integrate with other adult medical and surgical specialties, and to be supported by metabolic biochemical and molecular laboratories. This paper discusses the issues around this growing problem based upon experience gained working within a single centre dedicated to the care of adults and adolescents with inborn errors of metabolism.