Endocrine Abstracts

Background: Many young people have inadequate follow up because they lose contact with adult care following transfer from paediatrics. There is a need to adapt communication interventions to help young people to determine and enact their preferred involvement in consultations with health professionals.

Objective: To develop interventions to support communication with young people in endocrine care and to assess the feasibility of implementation in routine consultations.

Design: Combined methods in three stages: i) Communication study: cross-sectional analysis of communication between healthcare professionals and young people in paediatric and adult endocrine clinics in two UK centres. ii) Development of interventions to address the preferences and perceived needs of young people. iii) Assessment of feasibility and acceptability.

Sample: Young people aged 11–25 years diagnosed with endocrine conditions including: Congenital Adrenal Hyperplasia, Turner Syndrome childhood cancer survivors, and hypothalamic pituitary conditions.

Methods: Analysis of activity in consultations as indicated by time talked and questions asked; communication behaviours assessed by the Paediatric Consultation Assessment Tool (PCAT); and shared decision making rated by the OPTION tool. Self report of patient satisfaction using the Medical Information Satisfaction Scale (MISS- 21). Semi-structured interviews to determine communication needs.

Results: There were wide variations between patients in the proportion of time talking and number of questions asked. Qualitative interviews indicated important gaps in knowledge and understanding. Young people, parents and clinicians participated in developing interventions directed at: i) pre-consultation preparation, ii) in consultation support for young people and clinicians, and iii) post consultation resources including a summary sheet, http://www.explain.me.uk/ web site and consultation recording. The interventions were acceptable and feasible for use in routine consultations.

Conclusions: A suite of interventions can be offered to support young people’s active participation in consultations during transition to adult endocrine care.