Transition is an important part of endocrine care. For transition to be effective it is recognised that aspects of health care supporting transition need to be “young person friendly” as defined by the You’re Welcome Quality Criteria and needs to address the ever changing biological, psychological, sexual, social and educational/vocational needs of adolescence and emerging adulthood.
The age range that this period of life covers means that the responsibility for transitional care is within both paediatric and adult endocrine services. Using questionnaires, transition service provision was explored from the perspective of paediatric and adult providers and also from that of young people and their parents. The following questions were addressed:
- What is the current state of transitional care in endocrinology nationally?
- What are the attitudes and training needs of health care professionals working within transitional care?
- What are the user perspectives on transitional care in endocrinology and what are their transitional care needs?
39 trusts took part across the UK and ROI. Adolescent health care and transition in endocrinology in 36 trusts were described from 49 service provision questionnaires completed by providers (24 by paediatric endocrinologists). 233 young people in 24 trusts completed “Mind the Gap” questionnaires and in 20 trusts, 199 parents also completed the same questionnaire.
29 out of 36 trusts provided a clinic structure to see young people undergoing transition, only 8 out of 24 paediatric services and 11 out of 25 adult services made use of this structure to see young people presenting in the adolescent or young adult age group. Some transition arrangements were condition specific. The mean number of the 16 “young person friendly” criteria achieved was 8 (range 3-12).
The criteria less frequently achieved were:
- young people receive a hand-held summary at the time of transfer to adult care
- clinic takes place outside school/college hours; young people actively involved in service design, development and evaluation
- service provides sign posting and information about other local services for young people
Despite the criteria most frequently achieved being assisting young people in taking responsibility and giving them the opportunity to be seen on their own, at the age of 18 or older 34% reported being seen on their own and 21% contacting the hospital independently.
Young People (35%) themselves identified a gap (difference between best and current care) in all aspects, this was greatest in criteria related to environment and process compared with criteria related to the provider, one provider criteria that had a more marked gap was having “staff who they could talk to about sensitive issues”. Parents (45%) identified similar issues but also wanted “opportunities to meet parents” and also “for them to have time alone”.
Although most services have an infrastructure to support transition, criteria associated with a “young person friendly” service are not being met. Young people and parents in comparison with other aspects of care are satisfied with provider characteristics and therefore focus should be placed on issues relating to environment and process.
This project was led by Dr Helena Gleeson, supported by the Clinical Endocrinology Trust and completed in 2016.