Transition readiness among adolescents with rare endocrine conditions

Abstract

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 y, 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 like 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.

Adrenal crises in adolescents and young adults

“…Given this, evidence from studies on transition among young people with other chronic health problems, such as diabetes mellitus, can potentially inform service provision for AI patients [ 61 , 62 ]. Results from such investigations indicate that interruptions to the smooth transition from the paediatric to adult health services are pervasive and specific interventions directed at this area, taking into account the personal and social context of each patient, should improve adherence [ 61 , 63 , 64 ]. An absence of effective transition may contribute to healthcare fragmentation, decreased frequency of clinical follow-up, and adverse outcomes, with risk factors including loss of health insurance coverage, increased risk-taking behaviours, and difficulty coping with added responsibilities [ 61 , 65 ].…”

“…An absence of effective transition may contribute to healthcare fragmentation, decreased frequency of clinical follow-up, and adverse outcomes, with risk factors including loss of health insurance coverage, increased risk-taking behaviours, and difficulty coping with added responsibilities [ 61 , 65 ]. To address potential problems, gradual transition in well-educated and prepared patients is recommended [ 15 , 64 , 66 ].…”

“…Parents and carers may need education and support to assist them with managing this paradigm shift in AI management. Assessment of transition readiness together with checklists to detect areas for intervention are a sensible and practical recommendation [ 64 ]. With regards to AI, awareness of the life-threatening nature of an AC and the understanding that there is a requirement to take responsibility for its prevention may induce anxiety in some patients, and this may manifest paradoxically in neglect of warning signs and symptoms and hesitancy in taking appropriate interventions to prevent an AC.…”

Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome

“…For young adults, gaps in care (e.g., "lost to follow-up") can have significant negative sequelae on health and wellbeing (8). Structured approaches to transitional care for young adults with complex medical needs are needed to help patients develop self-management skills and support continuity of care (9). However, there are few published examples of structured transitional care for KS (10,11).…”

X-Linked Hypophosphatemia Transition and Team Management

“…A survey revealed educational and knowledge gaps in HCPs that were related to rare endocrine conditions [36]. Medical self-management skills, including medical knowledge, practical skills, and communication in adolescents with rare endocrine conditions were recently reported to be insufficient [37]. The authors recommended three elements to improve transition readiness: the repeated provision of individualized medical information; the use of a transition checklist; and training communication ability with the help of parents, caregivers, and/or e-technology.…”