title: Transition From Child to Adult Care--'It's Not a One-Off Event': Development of Benchmarks to Improve the Experience.
abstract: The transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed 'care gap'. A multi-site, multi-staged study was undertaken to identify the key aspects of a transitional programme of care for young people. Through a process of mapping, which involved drawing on primary and secondary data, a clinical practice-benchmark tool was developed. Benchmarks are a health care quality performance measurement 'tool'. They provide clinical teams with standards that services can measure themselves against to see how they are doing. They are used in a comparing and sharing activity, using a structured and systematic approach, to share best practice. They offer a mechanism to look at processes, and provide an opportunity to analyse skills and attitudes, which may be the hidden narrative in benchmarking. This paper describes steps in the development of benchmarks for transition to adult care, often associated with low patient and family satisfaction. Qualitative data were collected through focus groups, workshops and interviews from 13 young people with long-term health conditions, 11 parents, 36 professionals and 21 experts leading on transition within the United Kingdom. Transcripts were analysed using qualitative content analysis. For young people and their parents/carers to experience timely and effective transition, eight factors and their associated indicators of best practice were developed from the primary and secondary data and refined through an iterative process. We recommend their use to clinical teams to inform system level strategies as well as evaluation programmes.
authors.affiliation: Department of Children's Nursing, London South Bank University, London, UK. Electronic address: susiealdiss@lsbu.ac.uk.
authors.forename: Susie
authors.initials: S
authors.lastname: Aldiss
authors.affiliation: School of Health and Social Care, London South Bank University, London, UK.
authors.forename: Judith
authors.initials: J
authors.lastname: Ellis
authors.affiliation: Evelina London Children's Hospital, London, UK; Royal College of Paediatrics and Child Health, London, UK.
authors.forename: Hilary
authors.initials: H
authors.lastname: Cass
authors.affiliation: Service User Representative, UK.
authors.forename: Tanya
authors.initials: T
authors.lastname: Pettigrew
authors.affiliation: University College London Hospital NHS Foundation Trust, London, UK.
authors.forename: Laura
authors.initials: L
authors.lastname: Rose
authors.affiliation: Department of Children's Nursing, London South Bank University, London, UK; Centre for Outcomes and Experiences Research in Children's Health, Illness, and Disability, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
authors.forename: Faith
authors.initials: F
authors.lastname: Gibson
mesh_terms: D000293:Adolescent; D001291:Attitude of Health Personnel; D019985:Benchmarking; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D016730:Program Development; D036301:Qualitative Research; D058996:Quality Improvement; D060305:Transition to Adult Care / Q000458:organization & administration*; D006113:United Kingdom; D055815:Young Adult
keywords: Adolescents; Benchmarking; Long-term conditions; Quality improvement; Transition; Young adults