Journal of patient-reported outcomes · 2026
Identifying aspects of palliative and end-of-life care that are most important to people with lived experience and can be measured using routine data: a series of patient and public involvement workshops.
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Williamson Lesley E, Macdonald Georgina, Davies Joanna M, Kumar Rashmi, Ogden Margaret, Sterniczuk Kamil, Begum Samina, Tanna Mina, May Peter, Fraser Lorna K, Murtagh Fliss E M, Higginson Irene J, Sleeman Katherine E
Аннотация
BACKGROUND: We aimed to identify which aspects of palliative and end-of-life care are most important to people with lived experience of life-limiting conditions and can be measured using routine data currently available in the UK.
METHODS: Informed by a rapid umbrella scoping review and search of routine data available, we ran three online Patient and Public Involvement (PPI) workshops. 12-14 people from diverse backgrounds with experience of palliative and end-of-life care attended each workshop.
RESULTS: We identified nine domains of care that are important to people with lived experience of life-limiting conditions. Within four domains, there were ten aspects of care that are directly or indirectly measurable using available routine data in the UK. These included continuity of care, avoiding emergency care, early palliative care, control of physical symptoms, including pain, and achieving preferred place of death. Important aspects of care not measurable in current routine data related to domains of emotional, family and spiritual wellbeing, communication, trust and expertise.
CONCLUSIONS: Research using routine data in palliative and end-of-life care should focus on the areas identified as important to those with lived experiences. Incorporating patient-reported outcome measures into clinical records would help to address gaps in aspects of care not currently measurable using routine data.
METHODS: Informed by a rapid umbrella scoping review and search of routine data available, we ran three online Patient and Public Involvement (PPI) workshops. 12-14 people from diverse backgrounds with experience of palliative and end-of-life care attended each workshop.
RESULTS: We identified nine domains of care that are important to people with lived experience of life-limiting conditions. Within four domains, there were ten aspects of care that are directly or indirectly measurable using available routine data in the UK. These included continuity of care, avoiding emergency care, early palliative care, control of physical symptoms, including pain, and achieving preferred place of death. Important aspects of care not measurable in current routine data related to domains of emotional, family and spiritual wellbeing, communication, trust and expertise.
CONCLUSIONS: Research using routine data in palliative and end-of-life care should focus on the areas identified as important to those with lived experiences. Incorporating patient-reported outcome measures into clinical records would help to address gaps in aspects of care not currently measurable using routine data.