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Developing a Patient-Reported Experience Measure for use in children’s palliative care settings

This project will develop a Patient-Reported Experience Measure (PREM) for use in children’s palliative care settings.

What is a Patient-Reported Experience Measure?

When we evaluate treatments or health/care services, it is very important that we assess them against what is important to the person being treated or cared for, and their family.  This will include impacts (or outcomes) and experiences of care.

Patient-Reported Experience Measures (PREMs) are questionnaires which measure patients’ (and family members’) experiences of services or care in a robust and systematic way.  They may measure how relationships with those involved in their care make people feel (e.g. listened to, valued, understood), the more practical aspects of care (e.g. waiting times, parking), or whether certain things happened during an episode of care (e.g. information provision, coordination of care).  PREMs are used by researchers and people who commission or provide services to evaluate services or care pathways, identify how best to improve them, and monitor service/pathway improvement initiatives.

What is children’s palliative care?

Children’s palliative care describes any health or care service involved in the care of children with a life-threatening or life-shortening condition (e.g. specialist clinical teams, intensive care units and children’s hospices). It is not just about end of life care; indeed, many of these children and young people now survive.

Why do we need a PREM for children’s palliative care?

We know that health/care staff’s attitudes, behaviours and the way they communicate are important to, and can significantly affect, children and young people living with life-threatening or life-shortening conditions, and their families. It is therefore important that we have a tool which measures this aspect of children’s palliative care. At the moment, no such measure exists.

About this study

This project will develop the first PREM for children’s palliative care.  It will assess young people’s and parents’ experiences of using palliative care services and how the relationships they have with health/care staff in those services make them feel.  There will be two versions: one for young people, and one for parents. 

We will follow a standard set of steps to create the PREM:-

• we will use existing studies and also interviews with young people and parents to create lots of questions that could potentially be included in the PREM.
• these questions will be used to create a ‘draft version’ of the PREM.
• we will ask lots of young people and parents to complete the draft version.
• we will analyse their answers to identify the best questions and these will form the final version of the PREM.
• finally, we use statistical tests to check the PREM is good quality and can be used confidently by services and research teams.