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Abstract Body

Assessing outcomes of care is important as we develop and improve the provision of children’s palliative care (CPC). Whilst self-reporting is seen as the gold standard in patient reported outcome measurement (PROMs), this can be complex within CPC. Reviews of the literature show a lack of validated PROMs for CPC globally, which has hindered the development of CPC-focused research. This paper will explore the lessons learnt in the development of PROMs for children and their families within CPC, review the current status of PROM development and look at future needs/ developments. This will be set within the global context and why we need to measure outcomes in CPC. The complexities for developing PROMs for children and young people (CYP) will be explored such as: the ethics of undertaking research with a vulnerable population; child, parent or family reporting; whether different measures are needed for different ages, conditions etc.; and the length and how to score PROMS, recognising that the development of a perfect tool is unrealistic. PROMs under development will be discussed, demonstrating the progress being made, including: the African Children’s-Palliative Outcome Scale (C-POS); the Belgium version of the C-POS; a British C-POS; and a PROM aimed at children with neurological impairment. Ongoing work on PROMs is essential for the further development of CPC with measures that can be utilised in clinical practice, research and audit. As our ability to measure outcomes increases, we will be able to ensure that CPC provision meets the needs of CYP and their families.