Bridging the gap: metabolic and endocrine care of patients during transition

Abstract

ObjectiveSeamless 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.MethodsAn 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.ResultsWhile 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.ConclusionsEven 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.

Recognition and management of adults with Turner syndrome: From the transition of adolescence through the senior years

“…This includes the elements of transition readiness assessment; clinical summary and transfer record; dosing standards for estrogen; recommended approach to transitioning into adult practice; and recommended approach for planning pediatric practices (ACP, ). Guidelines specific to the transition of adolescents with Turner syndrome and other endocrine disorders stress the ongoing monitoring by both the pediatric and adult endocrinologist (Hokken‐Koelega et al, ). These models provide an important starting point for practitioners to begin the conversation about care transition in this population.…”

Jenseits von Hormonen und Wachstum – psychosoziale Hürden bei Turner-Syndrom

“…Schriftliche Unterlagen, Transitionsprotokolle und Vorbereitung auf die Anforderungen in der Erwachsenenmedizin wie verstärkte Verantwortungsübernahme mit gutem Überblick über das Krankheitsbild, selbstständig geführ-te Arztgespräche oder rechtzeitige Organisation von Kontrollterminen machen eine gut gelungene Transition wahrscheinlicher [23,24]. Aufmerksamkeit auf die individuelle Transitionsbereitschaft von Patienten mit chronischen Erkrankungen wird international propagiert, ein aus dem Amerikanischen adaptierter Fragebogen (TRAQ) [25] ist in Vorbereitung [26].…”

The primary health care of transgender adults

“…Although increases in CVD have been observed among transwomen, 11 this is not conclusive. 13,33,34 Oestrogen is associated with increases in blood pressure, but the degree to which this translates into clinical endpoints is unknown. Diabetes has been observed more frequently among transgender women, 13 and high dose ethinyloestradiol was associated with impaired glucose tolerance.…”