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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.
A systematic evidence synthesis aligned with a process of eliciting the perspectives of families and professionals from community, primary, secondary and tertiary care.
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.
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.
Outcomes following interventions for congenital heart disease (CHD) have received considerable attention within the UK since the 1990s.1–5 Advances in surgical interventions and hospital-based care of infants undergoing intervention for CHD have contributed to significant improvements in their short-term outcomes. This is despite a rise in the number and complexity of cases.6 As a consequence, the number and complexity of survivors requiring care in the community following discharge from the specialist surgical centres is increasing. To date, research has largely focused on in-hospital and short-term outcomes.7–10 However, there is now an established body of evidence showing appreciable mortality postdischarge (3–5%)11 and problems in accessing and providing appropriate support for babies and their families following discharge.12–16
Aligning care for patients with complex needs across organisations can be challenging, particularly when these involve rare conditions. Many initiatives are aiming to integrate care and address fractures in systems that allow individuals to ‘fall through the gaps’.17–21 The case for improving the alignment and coordination of services delivered across different organisations and sectors is clear. However, attempts to do so can risk exacerbating the situation through unintended negative consequences or by diverting attention and scarce resources from more effective approaches.22–24 Decisions about what needs to change, and how, in order to improve a service that crosses sectors are multifaceted. UK guidelines on service delivery25 and the development of complex interventions26–28 stress the importance of systematically assessing and synthesising relevant evidence. However, methods for robustly synthesising diverse forms of evidence in order to inform system-wide improvements to service delivery are not well established.21 29 30
In this article, we present an evidence synthesis aligned to a process of stakeholder engagement that culminated in a set of recommendations for improving the discharge and postdischarge management of infants undergoing intervention for CHD. This work builds directly on a programme of research that generated information regarding patient risk characteristics and the challenges encountered in accessing and providing services for this patient population.31 We propose that the systematic process developed and applied effectively in this work could have useful application in addressing service delivery improvement for other patient populations that can fall through the gaps between sectors and organisations.
An advisory group was established to review evidence relating to the discharge and postdischarge management of infants following surgical or catheter intervention for CHD. It comprised professionals from three tertiary cardiac centres, representatives from primary and secondary care, patient group representatives and academics from psychology, statistics, epidemiology and operational research (see online supplementary appendix 1). The group met on five occasions (each 2–3 hours) between March 2013 and June 2014 to consider emerging findings regarding UK service provision and outcomes in this patient population. The research presented to the advisory group included:
The advisory group also considered quality improvement initiatives in other paediatric disciplines.33 34 Their critique of evidence generated early in the process informed the gathering and exploration of evidence in the later stages. For example, an online discussion forum informed the questions asked within family interviews. Through a facilitated process in their final meeting, the group generated a list of candidate recommendations for improving services.
In July 2014, these candidate recommendations and a summary of the evidence were shared at a facilitated parent workshop. This comprised parents of infants who had been discharged following intervention for CHD and who then died or were readmitted to intensive care (7 parents representing 5 babies). Their views on the candidate recommendations were captured along with suggestions for additional ones.
The research team developed and applied the following process to generate a set of draft evidence-informed recommendations. This is shown schematically in figure 1.
Our starting point was three separate data frameworks generated in qualitative analyses of health professional, family and helpline staff interviews,12 13 31 32 and a thematic analysis of an online discussion forum.31 Some of the analytical themes were judged to be very similar to themes in other analyses but addressed from a different perspective (eg, a family as opposed to health professional perspective). Where this was the case they were merged into a ‘hyper-theme’ (eg, ‘discharge and transferring to non-specialist services’). A single hyper-framework was then created with each hyper-theme placed at its relevant point along a patient journey.
Data within hyper-themes were categorised as reflecting an underlying service problem, a candidate recommendation for improvement (eg, a cited example of good practice) or neither. Data considered neither were discarded from analysis. Within each hyper-theme, data judged to be representations of the same underlying service problem were grouped together to form a set of ‘archetypal service problems’. Each archetypal problem was thus associated with characterisations of that problem from different perspectives. For example, figure 2 shows the seven data attributed to archetypal problem ‘Poor access to local support services’.
Candidate recommendations from the advisory group and from the parent workshop were added to the hyper-framework if they directly addressed one of the archetypal problems (eg, suggestions relating to prenatal care were considered to be outside the remit of this work). Candidate recommendations judged to be very similar to each other were then combined in order to create a set of draft recommendations linked to the archetypal problems.
A working group was convened to assess the draft recommendations and propose a final set for wider endorsement. This comprised selected members of the advisory group and additional representatives from the community and charitable sector (see online supplementary appendix 1 for membership). A facilitated all-day workshop was held in September 2014 (audio recorded and with live minutes), in which the group was tasked with:
To determine priorities and the targeting of interventions, the working group explicitly considered the level and nature of the risk associated with each of several patient groups identified from analysis of national audit data (figure 3).11 The groups are defined by combinations of risk factors known at the point of discharge and differ in terms of risk of death or emergency readmission to paediatric intensive care within a year of discharge. Risk factors include: presence of a neurodevelopmental condition such as cerebral palsy (see ‡ in figure 3), a congenital anomaly such as urogenital/renal malformations (see † in figure 3) and a ‘high-risk’ primary cardiac diagnosis (complex CHD such as hypoplastic left heart syndrome or pulmonary atresia where the sole source of pulmonary blood supply after neonatal surgery is a systemic-to-pulmonary arterial shunt; see †† in figure 3). Given the limited resources available to these services and recognising the different levels of resource associated with proposed improvements, the working group agreed to consider targeting recommendations to patient groups on the basis of their profiles of risk.
Figure 4 shows the archetypal service problems located along the patient journey from preparation for discharge through to accessing support in the community when problems arise (see online supplementary appendix 1 for additional details). The original sources of evidence contributing to each archetype are noted. The final set of service recommendations endorsed by the advisory group is set out in full in the online supplementary appendix 1 and summarised schematically in figure 4 alongside the service problems they address. We note that these include recommendations for further research. The main recommendations are presented in box 1.
Structured discharge and transfer of care:
Home monitoring for patients with hypoplastic left heart syndrome (HLHS), functionally univentricular heart or pulmonary atresia:
Guidance on signs, symptoms and response (eg, an early warning tool):
Information and training for families prior to discharge:
Network review of deaths outside specialist centre:
Many recommendations apply to all infants as they require few resources and/or were considered to be important for everyone (eg, a structured discharge document). However, some target certain patient profiles (eg, multidisciplinary care teams for children with long-term complex needs in addition to their primary cardiac diagnosis). Given that over half of all adverse events occur in the 21% of patients in risk groups 1–4 (see figure 3), recommendations regarding costly interventions were prioritised for these high-risk patient groups (eg, discharge home via the local hospital). Finally, on the basis of qualitative evidence suggesting that support can be harder to access for families with learning difficulties or for those facing cultural or language barriers,12 13 some recommendations were prioritised for these groups (eg, offering family buddying).
We have developed evidence-informed recommendations for managing the discharge and postdischarge care of infants following major cardiac intervention. These address directly the known challenges in this previously neglected section of the care pathway. Importantly, within the context of resource constrained services, these recommendations incorporate the targeting of some interventions at certain patient groups on the basis of the level and nature of their risk, as well as the relative size of the group. Our work involved developing and applying a process for systematically synthesising evidence accrued from diverse sources (including published literature, quantitative and qualitative analyses), and feeding this into a structured multistakeholder decision-making process. This process could be used to address challenges in delivering ongoing care for other patient populations who require multiple services.
Many other fields of medicine have reduced deficits in communication and information transfer at hospital discharge using standardised and structured handover documentation:35–42 these could usefully inform the codevelopment, piloting and evaluation of one for infant CHD. Similarly, a checklist to support training for families prior to discharge should be informed by similar initiatives elsewhere, for example, in neonatal intensive care.43–45 Our recommendation that such a checklist addresses the needs of non-English-speaking families or parents with psychosocial or learning difficulties is in line with findings regarding vulnerable patients more generally.46 Our recommendation of an early warning tool for use with parents and community health professionals involved in the care of infants with CHD is supported by evidence of early warning tools being used to detect signs of deterioration in children presenting to accident and emergency by non-specialist practitioners and47 evidence that the timely recognition of a deteriorating child using standardised criteria leads to a greater chance of rescue in the context of paediatric infections such as meningococcal disease.48 49
Deciding how best to deliver effective and efficient services across sectors is challenging and inevitably involves an element of subjectivity, not least because there is often limited or disparate evidence that is difficult to synthesise. In this context, our study had two key strengths. First, developing and applying a systematic and transparent process for synthesising and incorporating a broad range of available evidence covering multiple aspects of the problem enhanced the richness and breadth of the recommendations. For example, the qualitative evidence was very useful in specifying what the problems in services were and how they might be addressed, while the quantitative evidence enabled prioritisation. Second, representatives from across the entire patient pathway critiqued the feasibility and acceptability of the recommendations, and the needs of service users remained of central importance through incorporating findings from an online discussion forum and interviews, views captured in a family workshop and involving a parent representative on the expert group. Although evidence-informed, the recommendations have not been validated and it will be important to evaluate their future implementation.
The recommendations are of direct relevance to all healthcare professionals caring for infants with CHD including general practitioners, community nurses, health visitors, secondary care paediatricians and clinicians in specialist surgical centres. They are also of importance to patients, their families and support groups. CHD services in the UK are currently under national review and the recommendations reported in this article fed into the Review's public consultation on care standards and service specifications to be used in commissioning specialist CHD services.50
The recommendations of this study will have resonance in other settings where such postdischarge deaths have been reported, including Germany51 and the USA.52 53 There is evidence of poor transfers and continuity of care across sectors in many other patient populations with needs that require a range of health services,54 in particular other complex patient groups where postdischarge care pathways are associated with the loss of vulnerable patients to follow-up,55 late unexpected deaths56 and undetected pathology.57 Our study provides an exemplar of how to approach such problems systematically, which is becoming increasingly important within the context of policy ambitions to move care closer to home. Our approach may be relevant in the development of complex interventions26–28 and service guidelines more broadly.26
Evidence suggests that there are cultural and language barriers to accessing support following intervention for infant CHD and that health outcomes differ between ethnic groups.11 32 However, insufficient data were available to understand fully the reasons for these differences and so further research on health inequalities is a priority. Despite a number of studies reporting efficacy of home monitoring programmes,51 52 58–63 further research is needed to ascertain the efficacy of individual constituent components (eg, frequency of oxygen saturation and/or weight monitoring, feeding intervention, use of breaching criteria), which vary across programmes. Finally, we note that future work developing, piloting and evaluating standardised home monitoring, training and early warning tools should include consideration of how to collect, analyse and use outcome and process measures appropriately, which could be informed by process measures developed for assessing transitional care of other vulnerable patients.38 39 64
The authors thank the parents who generously gave their time to participate in the study including interviews, workshops and online discussion forum. They also thank the health professionals and user group members who participated in the study.
Collaborators: Nick Barnes, Northampton General Hospital NHS Trust, Northampton, UK; David Baron, Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK; Hannah Charrot, Cambridgeshire Community Services NHS Trust, UK; Piers Daubeney, Royal Brompton and Harefield NHS Foundation Trust, London, UK; Kay Dyer, Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK; Christie Fox, Royal Brompton and Harefield NHS Foundation Trust, London, UK; Sally Hull, Jubilee Street Practice, NHS East London and the City, London, UK; Suzie Hutchinson, Little Hearts Matter, Birmingham, UK; Samantha Johnson, Children's Heart Federation, London, UK; Jan Pennington, Barts Health NHS Trust, London, UK; Samana Schwank, Children's Heart Federation, London, UK; Helen Silk, Brighton and Sussex University Hospitals, Brighton, UK; Liz Smith, Great Ormond Street Hospital NHS Foundation Trust, London, UK.
Contributors: SC contributed to the design and conception of the study, the analysis and interpretation of data, and drafting of the work. KB contributed to the design and conception of the study, the interpretation of data and drafting of the work. RK, JW, JT, RF and CB contributed to the design and conception of the study and the interpretation of data. DAR contributed to the interpretation of data. MU contributed to the analysis of data and drafting of the work. All authors revised the work critically for important intellectual content. SC and KB are guarantors of the paper and take responsibility for the integrity of the work as a whole, from inception to published article.
Funding: This project was funded by the National Institute for Health Research Health Services and Delivery Research programme (Project number: 10/2002/29). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR HS&DR programme or the Department of Health. SC was supported by the Health Foundation, an independent charity working to continuously improve the quality of healthcare in the UK. MU was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Further information about the Infant Heart Study can be found on the following NIHR website: http://www.nets.nihr.ac.uk/projects/hsdr/10200229.
Competing interests: None declared.
Ethics approval: Approval was obtained from London Central research ethics committee (reference number 12/LO/1398) and the National Health Service (NHS) Health Research Authority Confidentiality Advisory Group (reference number ECC 6-02 (FT5)/2012).
Provenance and peer review: Not commissioned; externally peer reviewed.
Data sharing statement: No additional data are available.