How can we identify and support children with life-limiting conditions with complex polypharmacy? – the PolyPiLL project


BNSSG ICB Research Capability Funding.

What is the research question?

How can we identify and support children with life-limiting conditions with complex polypharmacy?

What is the problem?

Many children with complex needs or life-limiting conditions require multiple medications (polypharmacy), often for lengthy periods, raising concerns around patient safety.  Parents/carers are often required to coordinate a complicated administration regime and extensive communication with multiple healthcare professionals across a variety of settings, increasing the demands on their time. Prescribing and supply of medication may be the responsibility of several separate healthcare providers (GPs, paediatric specialists, community or hospital pharmacies) with little collective oversight.

National and international initiatives about polypharmacy are aimed at improving the safety of medicines management for all.  While polypharmacy and the subsequent issues it creates for patients and healthcare professionals have been the focus of research and improvement initiatives for adult patients, little is known about the impact of polypharmacy on the children with life-limiting conditions, their families/carers, or how best to support them.

What is the aim of the research?

This research will improve our understanding of the issues raised by polypharmacy for children and young people with life-limiting conditions. In many cases children with life-limiting conditions cannot avoid the need for multiple medications, so the aim of this research is to explore how to minimise unnecessary harm to the patient and simplify the medicines management process for parents/carers. This understanding of the patient & family experience, combined with input from clinical colleagues, will support development of a process to identify and support those with complex or problematic polypharmacy in a person-centred manner.

Although beyond the remit of this RCF-2 funding application, ultimately this approach would ensure that any specialist pharmacist or clinical input to improve patient safety and support children and families at home was directed to those most in need, and that the outcomes of an intervention could be measurable.  Evaluation of these specialist, targeted interventions would be the subject of an application for NIHR RfPB funding in due course.

How will this be achieved?

This study will consist of three phases, starting with a literature review which will focus on the identification of complex polypharmacy, and interventions to minimise patient risk and carer burden.

In phase two, interviews with children/young people and their parents will provide qualitative evidence about their needs and concerns about managing their medications.  This will be supplemented with interviews with clinical staff, (children’s doctors, nurses, pharmacists) about how they identify complex or problematic polypharmacy, and what would signal the need for additional support for families.

In phase three, findings from phase 1 and 2 would be shared with stakeholders in a consensus event. Stakeholders would include patients and families, clinicians from a variety of settings and backgrounds, and commissioners. The outputs from this would lead to the co-creation of a tool to identify complex or problematic polypharmacy, and suggestions for professional support to improve safe, efficient and effective medicines management.

Who is leading the research?

Dr Nicky Harris, Research Fellow, Centre for Heath and Clinical Research UWE

Further information:

For more information or to get involved with this project, please contact