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Bridging the gap: metabolic and endocrine care of patients during transition
Anita Hokken-Koelega1, Aart-Jan van der Lely2, Berthold Hauffa3
1Erasmus University Medical CentreRotterdam, The Netherlands.
Insights
Transitioning pediatric endocrine patients to adult care requires tailored approaches, not a one-size-fits-all model. Early discussions on autonomy and continuous support are crucial for optimal health outcomes in complex endocrine disorders.
Area of Science:
- Pediatric Endocrinology
- Transition of Care
- Adolescent Health
Background:
- Transitioning pediatric endocrine patients to adult care remains suboptimal, particularly for those with complex conditions like small for gestational age, Turner syndrome, Prader-Willi syndrome, childhood cancer survivors, and childhood-onset growth hormone deficiency.
- Current transition models often fail to address the unique needs of these patients, leading to potential long-term health complications.
Approach:
- An expert panel of European pediatric and adult endocrinologists convened to identify gaps in managing endocrine patients during their transition from pediatric to adult healthcare settings.
- The panel explored challenges and best practices for ensuring a seamless continuum of care.
Key Points:
- A 'one size fits all' approach to transition is largely unsuccessful for endocrine patients with complex disorders.
- Tailored care during adolescence is essential to prevent complications such as failure to achieve adult height, reduced bone mineral density, obesity, metabolic issues, inadequate puberty, compromised fertility, and diminished quality of life.
- Initiating discussions about transition and healthcare autonomy in early adolescence and continuing through young adulthood is vital for optimal outcomes.
Conclusions:
- Significant work remains to enhance the quality of healthcare services for endocrine patients undergoing transition.
- Improving transition services requires a concerted effort from healthcare professionals dedicated to optimizing care for these vulnerable individuals.
Objective:
Seamless transition of endocrine patients from the paediatric to adult setting is still suboptimal, especially in patients with complex disorders, i.e., small for gestational age, Turner or Prader-Willi syndromes; Childhood Cancer Survivors, and those with childhood-onset growth hormone deficiency.
Methods:
An expert panel meeting comprised of European paediatric and adult endocrinologists was convened to explore the current gaps in managing the healthcare of patients with endocrine diseases during transition from paediatric to adult care settings.
Results:
While a consensus was reached that a team approach is best, discussions revealed that a 'one size fits all' model for transition is largely unsuccessful in these patients. They need more tailored care during adolescence to prevent complications like failure to achieve target adult height, reduced bone mineral density, morbid obesity, metabolic perturbations (obesity and body composition), inappropriate/inadequate puberty, compromised fertility, diminished quality of life and failure to adapt to the demands of adult life. Sometimes it is difficult for young people to detach emotionally from their paediatric endocrinologist and/or the abrupt change from an environment of parental responsibility to one of autonomy. Discussions about impending transition and healthcare autonomy should begin in early adolescence and continue throughout young adulthood to ensure seamless continuum of care and optimal treatment outcomes.
Conclusions:
Even amongst a group of healthcare professionals with a great interest in improving transition services for patients with endocrine diseases, there is still much work to be done to improve the quality of healthcare for transition patients.
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Assessment:
