Patient experience within the adult congenital heart disease outreach network: a questionnaire-based study

Background Specialist multi-disciplinary care improves outcomes of Adult Congenital Heart Disease (ACHD) patients. Following the NHS England Congenital Heart Disease standards review, the aim is to deliver high quality, patient-centred, care closer to patients’ homes. Cardiac investigations performed on the same day of outpatient appointments reduce the non-attendance rates. This young cohort of patients, benefits from comprehensive multi-disciplinary management. We developed a Patient Questionnaire across our West Midlands ACHD network to measure patient experience. Methods Patient questionnaires were distributed to patients attending outpatient clinics in all 8 Outreach Centres and the Level 1 ACHD Centre (University Hospitals Birmingham). Results 71 males (55%) and 59 females (45%), median age range 25–34 years old (range between 16 and 75 years old), returned the questionnaires ( n = 130). Most patients travelled less than one hour to hospital (93%, n = 120) and less than 20 miles (86%, n = 99). The mean travel distance was 14 ± 12.3 miles (range 1 to 160 miles), with Level 1 ACHD Centre patients travelling a significantly longer distance (mean 29.6 ± 44 miles) compared to the local Outreach Centres (mean 11.3 ± 9 miles, p = 0.0037). There was a wide variability in the provision of parking, although most patients found the appointment time and location convenient (91%, n = 117 and 95%, n = 121 respectively). There was also marked variation in the number of electrocardiograms (19–100%) and echocardiograms (0–60%) performed on the same day as their clinic appointment. Most patients felt they were given enough information regarding their condition (85%, n = 98), with no significant differences between the centres ( p = 0.24). Conclusion To our knowledge, this is the first questionnaire-based study assessing patient experience within the NHS ACHD Outreach network with significantly reduced travel times and maintained high patient satisfaction. There was a wide variation in investigations performed and patient information leaflets provided. Standardisation of services is required at all centres to ensure equity of care, with Specialist Nurses’ input and more availability of tests on the day of clinic appointments in all centres.