Patient experience within the adult congenital heart disease outreach network : a questionnaire-based study
Ooues, Georgina Clift, Paul Bowater, Sarah Arif, Sayqa Epstein, Andrew Prasad, Neeraj Adamson, Dawn Cummings, Mandy Spencer, Charles Woodmansey, Paul
Ooues, Georgina
Clift, Paul
Bowater, Sarah
Arif, Sayqa
Epstein, Andrew
Prasad, Neeraj
Adamson, Dawn
Cummings, Mandy
Spencer, Charles
Woodmansey, Paul
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Affiliation
University Hospitals Birmingham NHS Foundation Trust; Wye Valley NHS Trust; University Hospitals Coventry and Warwickshire NHS Trust; Royal Wolverhampton NHS Trust; Shrewsbury and Telford Hospital NHS Trust; University Hospitals of North Midlands NHS Trust; Worcestershire Acute Hospitals NHS Trust; South Warwickshire University NHS Foundation Trust;
Other Contributors
On behalf of The West Midlands ACHD Network, UK
Publication date
2018-09-03
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Abstract
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.
Citation
Ooues G, Clift P, Bowater S, Arif S, Epstein A, Prasad N, Adamson D, Cummings M, Spencer C, Woodmansey P, Borley J, Ingram T, Morley-Davies A, Roberts W, Qureshi N, Hawkesford S, Pope N, Anthony J, Gaffey T, Thorne S, Hudsmith L; On behalf of The West Midlands ACHD Network, UK. Patient experience within the adult congenital heart disease outreach network: a questionnaire-based study. J Congenit Cardiol. 2018 Sep 3;2(1):7. doi: 10.1186/s40949-018-0020-3.
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Article