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

Abstract

Background: Specialist multidisciplinary 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 multidisciplinary 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.

Baring all: The impact of the hospital gown on patient well‐being

“…CHD is the most common congenital anomaly describing a range of cardiac conditions, which vary widely in complexity, affecting 1 in every 125 live births (Chen et al, 2018). Medical and surgical advances have improved survival rates for this population into adulthood by 75% since the 1940s (Ooues et al, 2018), resulting in a growing population of adults with CHD (Greutmann et al, 2015). It was hypothesized that such adults would have wide-ranging lived experiences of wearing hospital clothing since throughout the life course, they may require medical procedures that often involve the wearing of hospital clothing.…”

An exploration of psychological trauma and positive adaptation in adults with congenital heart disease during the COVID-19 pandemic.

“…CHD is the most common birth defect with a worldwide prevalence of approximately 1% comprising a medically heterogeneous population (Logan et al, 2018;Ntiloudi, et al 2021). Widely considered a success story of modern medicine, infants diagnosed with CHD today have over a 95 percent chance of reaching adulthood in comparison to 55 years ago when only 25 percent survived (Ooues, 2018). However, CHD is not curative and members of this population often endure a lifetime of medical monitoring and interventions with increased exposure to a range of psychosocial stressors that contribute to this increased psychological morbidity (Morton, 2020).…”

Care of infants, children and adults with congenital heart disease

“…Service providers are expected to measure patient experience and satisfaction with the quality of care received, with the assumption that areas for improvement will be highlighted, informing subsequent changes to service provision. Ooues et al's (2018) survey of patient experience in all outpatient clinics, including the (Level 1) specialist tertiary centre within an NHS ACHD Outreach Network, revealed variations in patient care that included the number of investigations performed on the clinic day, the provision of patient information leaflets, and knowledge about how to contact the ACHD team. The study raised important concerns about the equity of access to care from within the network and recommended standardisation of management protocols and network-training days.…”