Examining the relevance and implementation of a core-outcome set for inpatient care for Children with Complex Care Needs in the NHS

Supervisors:

• Professor Joseph Manning joseph.manning@le.ac.uk
• Professor John Maltby
• Dr Emma Popejoy

Project Description:

Children with complex care needs (CCCN) represent a growing and increasingly visible population within paediatric healthcare, both in England and internationally1. Advances in medical care have improved survival, contributing to a sustained rise in the number of children living with complex care needs1. These children require frequent and prolonged hospital admissions, yet evidence suggests that outcomes and experiences for this group remain suboptimal1,2.

Research focused specifically on improving inpatient care for CMC remains limited. As attention to this area grows, it is important to ensure that appropriate and meaningful outcomes are identified to assess the impact of emerging interventions. Work to develop a core outcome set (COS) for this population is progressing internationally3; however, there is a need to establish the feasibility of collecting the required outcome data within routine NHS systems. Ensuring this will support consistent outcome measurement in future studies and enable meaningful comparison and synthesis of findings across research in this field4.

This PhD will examine the transferability and use of a new Core Outcome Set (COS), within the context of the English NHS. The research will explore the relevance and usability of this COS in the English NHS setting. The PhD will include:

1) Qualitative research with key stakeholders in England to explore the relevance of the COS across the range of paediatric NHS inpatient settings (including district general hospitals, tertiary centres, and hospitals with paediatric critical care facilities), incorporating perspectives from patients, families, and healthcare professionals.
2) Modification to the COS, if necessary, using a structured Nominal Group Technique.
3) Assessing the feasibility of collecting the COS data within NHS research studies, providing practical insight into implementation across diverse clinical settings.

References
1. Popejoy E, Coad J, Cohen E, Sheikhi A, Manning JC. Moving from Challenge to Change: Redesigning Inpatient Care for Children with Complex Care Needs. Children. 2026; 13(4):502. https://doi.org/10.3390/children13040502
2. Popejoy E, Coad J, Cohen E, et alEnhancing the experience and outcomes of children with complex care needs in acute paediatric settings: a realist review protocol. BMJ Open 2025;15:e097328. doi: 10.1136/bmjopen-2024-097328 
3. MacKay, L., Dewan, T., Nicols, D., Santana, M., Swicker, J., et al. Improving inpatient care of children with medical complexity: Co-creation of a core outcome set as the first step in a Canadian setting. Available at: https://www.comet-initiative.org/Studies/Details/3654. Accessed on: 13/05/26.
4. Kirkham JJ, Williamson P. Core outcome sets in medical research. BMJ Med. 2022 Oct 17;1(1):e000284. doi: 10.1136/bmjmed-2022-000284.