Title: Critically ill children and young people: do national Differences in access to Emergency Paediatric Intensive Care and care during Transport affect clinical outcomes and patient experience? The DEPICT study
Funder: Department of Health and Social Care

Abstract: IMPORTANCE: The reduction of preventable morbidity and mortality in acutely ill or injured children is a key NHS priority. Since the centralisation of paediatric intensive care (PIC) services two decades ago, children and young people with critical illness or injury at general hospitals require transfer to a tertiary hospital with a PIC unit (PICU), usually by PIC retrieval teams (PICRTs). National audit data reveal wide variations in how quickly PICRTs reach patients to start paediatric intensive care, how quickly transported children reach a PICU, and what care is provided by PICRTs during stabilisation and transport to PICU. Whether these differences affect clinical outcomes and experiences for critically ill children and their families is unknown. High quality evidence is crucial to guide future decisions about national policy in this important area of child health. OBJECTIVES: 1.1: To study the association between timeliness of access to paediatric intensive care and clinical outcomes; 1.2: To study the association between care delivered by PICRTs and clinical outcomes; 1.3: To explore parents’, and where feasible children’s, experiences of transport to PICU; 1.4: To explore clinicians and service managers' perspectives of PICU retrieval and its impact on care provided to critically ill children, and wider impact on other patients and services; 2.1: To perform cost effectiveness analyses of current models of PICRT provision; 2.2: To use mathematical modelling to explore whether alternative service models can improve clinical and cost effectiveness; and 3. To generate evidence to inform future clinical standards and information resources METHODS: We propose a mixed methods evaluation, combining quantitative analyses (1.1, 1.2), a qualitative study (1.3, 1.4), health economic evaluation (2.1) and mathematical modelling (2.2). For 1.1/1.2, we will analyse PIC national audit data (PICANet) linked to Hospital Episode Statistics (HES), death registrations and adult critical care national audit data (Case Mix Programme) to study whether and how timeliness of access to intensive care and care delivered by PICRTs affect clinical outcomes in critically ill children transported to UK PICUs. Outcomes - primary: 30-day mortality; secondary: PICU outcomes (length of stay, organ support interventions and death), length of overall hospital stay, A&E attendances and hospital admissions within 12 months of PICU discharge. For 1.3/1.4, we will use qualitative methods (interviews, workshops) and questionnaires to elicit the experiences and perceptions of parents, children themselves (where appropriate), and clinicians, service managers and commissioners. 2.1: We will evaluate costs and benefits of different models of current PICRT provision. 2.2: Building on the insights from 1.1/1.2, we will generate several mathematical ‘what-if’ models to evaluate different potential models of care and use location-allocation optimisation methods to determine where PICUs/PICRTs might be best located. STUDY MANAGEMENT: An independent data monitoring committee and a separate steering committee will oversee the study. Timetable: objectives 1.1 to 1.4 (months 4-24); 2.1 and 2.2 (months 19-36); patient and clinician workshops (months 31-33); final workshop and report (months 33-36). The research team consists of clinicians; parents; academic experts in paediatric epidemiology, national audit, health economics and mathematical modelling; and an NHS commissioner.

Lay abstract: Reducing preventable child deaths by improving care provided to acutely ill or injured children is an important priority for the NHS. Children’s intensive care is a high-cost and specialised service, with fewer than 30 paediatric intensive care units (PICUs) in the UK. This means that a child taken to their nearest hospital with critical illness or injury will usually need to be transferred to a PICU for further treatment. Each year, 6000 children require emergency transfer from a local hospital to a PICU, on average 20-30 miles away. These children tend to be the sickest of PICU patients, and are more likely to die or have long lasting complications. Transports of sick children to PICU are usually done by specialist retrieval teams (PICRTs). PICRTs are mobile intensive care teams, who take specialist expertise to the child and safely transport them to a PICU. Our previous research showed that PICRTs improve the survival of critically ill children. However, how quickly PICRTs are able to reach sick children, and how they are organised and deliver clinical care varies across the UK. There has been little research into these differences and how they might influence outcomes and experiences for sick children and their families. In the absence of hard evidence, current national standards are based on the opinion of clinical experts. In short, we do not know if national variation in how PICRT services are organised and delivered matters, or whether current standards help achieve the best outcomes for patients. We want to do research to better understand whether and how existing differences in access to paediatric intensive care and care provided by PICRTs affect clinical outcomes and experiences for transported critically ill children and their families. We plan to analyse routinely collected national audit data to examine various aspects such as how long it takes a PICRT to reach the patient, how long it takes the child to reach the PICU, the seniority of clinicians performing the transport, medical procedures performed by the PICRT and any critical incidents that occur during transport. We will investigate whether any of these factors influence how likely a child is to survive. We will also study other clinical outcomes such as how long the child stays in PICU and in hospital, procedures performed, and hospital attendances after discharge from PICU. As well as clinical outcomes, we will collect and analyse information about the experiences of sick children by interviewing the families involved, and staff experiences of PICU retrieval by interviewing clinicians from PICUs, PICRTs, and local hospitals. Alongside this work, we will look at the costs of different ways of delivering PICRT services for sick children and which may represent best value for money, and use mathematical techniques to study if and how alternate models of service delivery can improve clinical outcomes in a cost effective manner. Our work will provide the first comprehensive, national picture of service delivery and how this affects clinical outcomes and patient experience. The research team includes PICU and transport clinicians, parents, academic experts and an NHS commissioner. Independent committees consisting of clinicians and parents will be formed to oversee the study. Our work will directly inform the development of evidence-based national standards for PICU transport and help improve the patient experience for critically ill children and their families

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE