Endocrine Connections (Apr 2021)

Transition readiness among adolescents with rare endocrine conditions

  • Lisette van Alewijk,
  • Kirsten Davidse,
  • Karlijn Pellikaan,
  • Judith van Eck,
  • Anita C S Hokken-Koelega,
  • Theo C J Sas,
  • Sabine Hannema,
  • Aart J van der Lely,
  • Laura C G de Graaff

DOI
https://doi.org/10.1530/EC-20-0304
Journal volume & issue
Vol. 10, no. 4
pp. 432 – 446

Abstract

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Objective: Adolescents and young adults (AYA) with common endocrine disorders show a high dropout (up to 50%) after the transfer from paediatric to adult endocrinology. Little is known about transition readiness in rare endocrine conditions (rEC). This study aims to assess medical self-management skills (SMS) among AYA with rEC in relation to age and gender, in order to understand dropout and increase transition readiness. Design: Cross-sectional study using web-based medical self-management questionnaires. Methods: Questionnaires consisting of 54 questions in seven domains were filled out by the adolescents before the first shared appointment with both paediatric and adult endocrinologist. Results: Fifty-seven patients (median age 17 years, 25/57 females) participated and generally scored well on most items. However, one out of seven did not know the name of their disorder, one sixth of the glucocorticoid users did not know that dose should be adapted in case of illness or surgery, over one-fifth had nev er ordered their repeat prescriptions themselves and two-thirds had never had a conversation alone with their doctor. Conclusions: Several SMS among patients with rEC are insufficient, with regard to medical knowledge, practical skills and communication. As SMS are only weakly related to non-modifiable factors, such as age and gender, we recommend focussi ng on other factors to increase transition readiness. The timing, amount and ‘mode’ of medical information should be individualised. Transition checklists should be used to detect shortcomings in practical skills and communication, which can subsequently be trained with the help of parents, caregivers and/or e-technology.

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