TY - JOUR
T1 - Transition readiness among adolescents with rare endocrine conditions
AU - Alewijk, Lisette Van
AU - Davidse, Kirsten
AU - Pellikaan, Karlijn
AU - Eck, Judith Van
AU - Hokken-Koelega, A C S
AU - Sas, Theo C J
AU - Hannema, Sabine
AU - Van der Lely, Aart J
AU - de Graaff, Laura C G
N1 - Publisher Copyright: © 2021 The authors Published by Bioscientifica Ltd. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021
Y1 - 2021
N2 - 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 never 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 focussing 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.
AB - 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 never 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 focussing 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.
KW - Adolescent
KW - Endocrine
KW - Rare diseases
KW - Self-management
KW - Transition readiness
KW - Young adult
UR - http://www.scopus.com/inward/record.url?scp=85106926425&partnerID=8YFLogxK
U2 - https://doi.org/10.1530/EC-20-0304
DO - https://doi.org/10.1530/EC-20-0304
M3 - Article
C2 - 33764888
SN - 2049-3614
VL - 10
SP - 432
EP - 446
JO - Endocrine Connections
JF - Endocrine Connections
IS - 4
ER -