Identifying improvements to complex pathways: evidence synthesis and stakeholder engagement in infant congenital heart disease

Abstract

ObjectivesMany infants die in the year following discharge from hospital after surgical or catheter intervention for congenital heart disease (3–5% of discharged infants). There is considerable variability in the provision of care and support in this period, and some families experience barriers to care. We aimed to identify ways to improve discharge and postdischarge care for this patient group.DesignA systematic evidence synthesis aligned with a process of eliciting the perspectives of families and professionals from community, primary, secondary and tertiary care.SettingUK.ResultsA set of evidence-informed recommendations for improving the discharge and postdischarge care of infants following intervention for congenital heart disease was produced. These address known challenges with current care processes and, recognising current resource constraints, are targeted at patient groups based on the number of patients affected and the level and nature of their risk of adverse 1-year outcome. The recommendations include: structured discharge documentation, discharging certain high-risk patients via their local hospital, enhanced surveillance for patients with certain (high-risk) cardiac diagnoses and an early warning tool for parents and community health professionals.ConclusionsOur recommendations set out a comprehensive, system-wide approach for improving discharge and postdischarge services. This approach could be used to address challenges in delivering care for other patient populations that can fall through gaps between sectors and organisations.

Interventional treatments and risk factors in patients born with hypoplastic left heart syndrome in England and Wales from 2000 to 2015

“…As has been reported in other cohorts,27 there was significant interstage mortality between stages 1 and 2. Previous focus on this interstage period has enabled the evaluation of therapeutic interventions to reduce mortality, including additional surveillance of patients in home monitoring programmes 6. Furthermore, non-randomised studies of digoxin use between stages 1 and 2 indicate this is linked to reduced mortality 28.…”

Combining qualitative and quantitative operational research methods to inform quality improvement in pathways that span multiple settings

“…A key aim of the research was to use the information being generated to identify ways to improve the provision of care and support for this patient population in the discharge and postdischarge period. 61 …”

“…In a parallel process, draft evidence-informed service improvements were generated by constructing a hyperframework of qualitative analyses, identifying archetypal service problems, and linking these to candidate recommendations using data generated in the research project (as described in ref. 61 ). As part of the SSM approach, a final workshop with the entire Working Group was convened in which the operational researcher facilitated a structured discussion about the feasibility and acceptability of the drafted service improvements from different worldviews, informed by learning captured in the Rich Picture, conceptual models and individual conversations about potentially conflicting viewpoints or processes.…”

Issues facing families of infants discharged after cardiac surgery: the perceptions of charity helpline staff

“…Thus, capturing the perspective of helpline staff about communication issues has also highlighted the need for interventions with professionals as well as parents. The findings from this study have contributed, through a comprehensive evidence synthesis including interviews with parents and health professionals, to a series of evidence‐based recommendations for improving the discharge and postdischarge care of infants following cardiac surgery, reported elsewhere …”

“…There is a wealth of evidence about the psychological impact of the diagnosis of CHD and subsequent treatment on parents , but far less is documented about the specific concerns of parents once their child is discharged from hospital. As part of a larger study looking at infants with complex CHD who have been discharged home, which included interviews with parents and health professionals , we wanted to interview helpline staff from a number of charities providing support to families of children with CHD to understand their experiences of talking to families whose baby had recently been discharged after infant cardiac surgery. We specifically wanted to elicit their perceptions of the key reasons/issues/concerns that families called the helpline to discuss in relation to their baby's cardiac surgery.…”