ESPE Abstracts

Rare endocrine conditions present specific diagnostic and management challenges to healthcare providers, especially regarding transition. Despite the need for practical guidance on this subject, consensus on structured approaches to transition are lacking. The aim was to map the current clinical practice, and identify the unmet needs regarding transition of care for patients with pituitary disease in the reference centers (RCs) of the European Reference Network on Rare Endocrine Conditions (Endo-ERN). A survey-based, cross-sectional study using the EU Survey tool was performed, and completed by 46 physicians (n) from 30 RCs (N). The respondents were pediatric and adult endocrinologists, representatives for Main thematic group 6 (MTG6) for their respective centers. The survey demonstrated that transition is a common practice among Endo-ERN centers (n=44/46), usually accomplished by a multidisciplinary team meeting (n=20/30). Criteria for start and end of transition were defined in half of the RCs (n=15/30), with 20% (n=5/30) of centers providing conflicting answers. Another aspect – the transition readiness was assessed in more than 75% of the RCs (n=26/30). That was done primarily by unvalidated tools such as subjective opinions and informal consultations. Pituitary-specific transition assessment tool was applied in one center only. Transition protocol was present in 9% of RC. Decisions about transition management were taken at combined meetings, or based on clinicians’ personal judgment in 91% RCs. A minority of physicians evaluated the effectiveness of transition-related interventions (n=11/46), or medical outcomes (n=8/46). Patient-reported outcome measures were least often used (n=4/46). Unmet needs included development of guidelines (n=5/46), and EU-wide approach (n=2/46). This study exemplifies the unmet needs for a structured approach to transition of patients with rare hypothalamic and pituitary conditions from healthcare providers and patients’ perspective. It also demonstrates the need for further research on the definitions of successful transition of care and factors facilitating the successful transition.