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

Abstract

Objectives: Many 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.

Design: A systematic evidence synthesis aligned with a process of eliciting the perspectives of families and professionals from community, primary, secondary and tertiary care.

Setting: UK.

Results: A 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.

Conclusions: Our 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.

Keywords: STATISTICS & RESEARCH METHODS.

Figure 1

Schematic depiction of the process used to develop the draft recommendations (steps 1–3 of method). This involved creating a hyper-framework of data from four qualitative analyses (step 1, dotted arrows), identifying archetype service problems (step 2, solid arrows) and linking candidate recommendations to service problems (step 3, dashed arrows). HP, health professional; MDT, multidisciplinary team.

Figure 2

An example archetypal service problem. The data on the left-hand side were interpreted as seven different manifestations of the same archetypal problem (‘poor access to local support services’) by the research team. In this example, the data originated from two qualitative analyses: a framework analysis of family interviews and a framework analysis of health professional interviews. This archetypal problem sits within the theme ‘Discharge and transferring to non-specialist centres’. HV=health visitor.

Figure 3

Patient-risk groups. Patient groups identified and validated in statistical analysis of national cardiac and Paediatric Intensive Care Unit (PICU) audit data. The six mutually exclusive groups are defined with respect to the following patient characteristics: absence/presence of neurodevelopmental condition‡, absence/presence of congenital anomaly†, low-risk/high-risk primary cardiac diagnosis†† and length of stay > or <1 month. Neurodevelopmental conditions and congenital anomalies were placed in groups based on the Read codes present in the audit data. For each group, we present the percentage of the overall patient population within the group, the percentage of overall adverse events* accounted for by the group and the occurrence of adverse event* in the group. *Adverse event=death (occurring outside a planned readmission) or emergency readmission to PICU within the first year postdischarge from infant cardiac surgery. ‡Neurodevelopmental conditions=a range of conditions that are likely to have lifelong impact, for example, epilepsy/seizures, developmental delay, sleep apnoea, hydrocephalus, retinopathy of prematurity, stroke, hemiparesis/hemiplegia, anoxic encephalopathy, cerebral venous sinus thrombosis and cerebral palsy. †Congenital anomalies=a range of major anomalies (some requiring neonatal surgery) with an impact that is likely to be lifelong, for example, Down syndrome, 22q11 deletion (Di George) syndrome, urogenital/ renal malformations, tracheal/trachea-oesophageal malformations, vision/hearing deficits and exomphalos/gastrointestinal malformations. ††High-risk primary cardiac diagnosis=hypoplastic left heart syndrome, functionally univentricular heart or pulmonary atresia with intact ventricular septum. Low-risk primary cardiac diagnosis=all other cardiac diagnoses.

Figure 4

Endorsed recommendations for addressing archetype service problems. The archetype service problems generated from evidence (left-hand side) are grouped in themes with linked recommendations for service improvements (right-hand side). Data originated from qualitative analyses of family interviews , health professional interviews , helpline staff interviews and an online discussion forum . A&E, accident and emergency department; GP, general practitioner; HLHS, hypoplastic left heart syndrome; HP, health professional; IVS, intact ventricular septum; MDT, multidisciplinary team; M&M, mortality and morbidity meeting; PA, pulmonary atresia; UVH, functionally univentricular heart.