ArticleEndocrine connections2021
Transition readiness among adolescents with rare endocrine conditions.
Article in Endocrine connections, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it, 12 citations in OpenAlex.
- Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome.Frontiers in endocrinology · 2022Pooled it
- Living with Legacy: Outcomes and Future Implications for Offspring of Patients with MEN1.Journal of the ASEAN Federation of Endocrine Societies · 2026Review
- Mapping transition of care for rare endocrine conditions: findings from a cross-sectional survey by the Endo-ERN ToC Working Group.Endocrine connections · 2026Article
- A Cognitive Behavioural Therapy for Mayer-Rokitansky-Küster-Hauser Syndrome Adapted for Other Disorders of Sex Development: A Qualitative Study.The Australian & New Zealand journal of obstetrics & gynaecology · 2026Article
- Approach to the Patient With Turner Syndrome.The Journal of clinical endocrinology and metabolism · 2025Review
- Feasibility of transition research in pituitary disease using patient registries: a EuRREB secondary survey.Endocrine connections · 2025Article
- Policy for transitioning childhood-onset growth hormone deficiency from pediatric to adult endocrine care in Belgium.Frontiers in endocrinology · 2024Review
- Adrenal crises in adolescents and young adults.Endocrine · 2022Review
Corrections and comments
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Authors and funding
9 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveAdolescents 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.
designCross-sectional study using web-based medical self-management questionnaires.
methodsQuestionnaires consisting of 54 questions in seven domains were filled out by the adolescents before the first shared appointment with both paediatric and adult endocrinologist.
resultsFifty-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.
conclusionsSeveral 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.
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Registered trials
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