title: An evaluation of a specialist nursing service for adult patients with congenital heart disease.
abstract: The purpose of this study was to evaluate grown-up congenital heart (GUCH) patients' experiences and satisfaction with the delivery of a nurse specialist service, including perceived priorities and recommendations for future service delivery. A service evaluation utilizing descriptive, cross-sectional survey principles was conducted over a 2 year period. Postal questionnaires were sent to three patient cohorts (general adult n = 747; pregnancy n = 202; learning disability n = 72). Quantitative data were analysed using descriptive statistics. The majority of respondents were satisfied with the nursing care provided, including information provision, time made available to discuss needs, emotional support, well-being, self-management and symptom distress. Priority areas included timely information and advice; specialist knowledge and expertise; effective care coordination, monitoring and support. Accessibility, contact and responsiveness were dominant. A majority of patients agreed that their first, second and third-rated priorities had been met. Findings identified strong commitment, support and satisfaction with the GUCH nurse specialist service.
authors.affiliation: The Royal Marsden School, Royal Marsden NHS Foundation Trust, London, UK.|London South Bank University, London, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Hatchett
authors.affiliation: Faculty of Health and Social Care, London South Bank University, London, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: McLaren
authors.affiliation: UCLH NHS Foundation Trust, London, UK.|Adult Nursing, Faculty of Health and Social Care, London South Bank University, London, UK.
authors.forename: Philomena
authors.initials: P
authors.lastname: Corrigan
authors.affiliation: London, UK.
authors.forename: Lynda
authors.initials: L
authors.lastname: Filer
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D064646:Cardiovascular Nursing; D003430:Cross-Sectional Studies; D005260:Female; D006330:Heart Defects, Congenital / Q000451:nursing* / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D055815:Young Adult
keywords: adult congenital heart disease; nurse-led services; patient experience; patient needs; service evaluation