End of Life Care for Infants, Children and Young People: a mixed methods evaluation of current practice in the United Kingdom

Research question Do outcomes for infants, children and their families, and resources required, vary depending on the model of End of Life (EoL) care that they receive? Background

4500 children die in England and Wales every year and although there are increasing paediatric palliative care and hospice services, these services vary in their professional configuration, services provided, funding sources and population served. There is little evidence on the models of care, quality of care, resourcing and outcomes of children and their families who use these services. Most of the recommendations in the NICE guidance are based on low quality

evidence. Aims and objectives Aim: To identify and investigate different models of providing EoL care for infants, children and young people, in terms of outcomes and experiences for children and parents, resource use and costs to families and the NHS. Objectives: 1.To identify and describe current models of delivering EoL care to infants, children and young people

in the UK. 2.Identify barriers and facilitators to implementation of these EoL models 3.To assess inequalities in access/availability of these models of care. 4.To explore whether the experiences and outcomes for child or parent vary dependent on the model of EoL care received. 5.To compare the resource implications of the different models of EoL care for the NHS and families.

Methods This mixed methods study of three linked workstreams and cross-cutting health economics theme will examine three exemplar clinical settings which care for >50% of children that die each year: cancer services, paediatric intensive care units (PICU) and neonatal units (NNU). WS1: A questionnaire survey of Service Leads will systematically capture data relevant to current

practice to providing EoL care, develop a typology of models of EoL care and associated resource use and costs. These models will inform the sample selection in WS2 & 3 and the analyses in WS3. WS2: A qualitative study will explore how these models are implemented and experienced, and identify the important outcomes and resources associated with EoL care. Focus groups with healthcare

professionals will explore experiences of meeting EoL care needs and views on the factors affecting access to EoL care including identification of any inequalities and barriers in access. Interviews with bereaved parents will explore experiences of their child’s treatment and care towards the end of their

life and associated costs to them. WS3: We will use routinely collected data to compare EoL outcomes (e.g. high intensity treatments, place of death) in children with cancer who have died and had different EoL models of care. Then prospective data collection in PICU and NNUs will collect data on 800 dying children including other

outcomes (e.g. choices given to parents, symptoms). Data collection from the parents after death will provide additional information. We will assess whether outcomes vary according to the different models of EoL care and assess the associated resource use and costs. Timelines for delivery This 4-year study includes ongoing dissemination to key audiences (parents, service providers,

commissioners) via knowledge exchange events, web-based platforms, social media and clinical/academic forums. Anticipated impact and dissemination The results will inform service delivery in order to utilise finite resources to maximise impact