Measurement Matters – Measuring experiences of palliative and end-of-life care: Creating patient and carer question sets.

This report outlines the development of tailored question sets for palliative care patients and carers about their experiences of care. The question sets will support the collection of information about these patients’ and carers’ experiences with NSW healthcare services, which can be used to drive improvements.

The development of these question sets is the result of extensive research and consultation, including a literature review, a review of relevant NSW policy, focus groups with patients and carers, consultation with palliative care professionals, and cognitive testing with patients and carers. Through rigorous prioritisation and selection, core question sets were created. Inevitably, these processes of prioritisation and selection, and the sensitivities around conducting surveys in the context of palliative care, mean that the question sets are necessarily short and not all important issues can be covered.

The process has also been informed by the specialist expertise in palliative care of Improving Palliative, Aged and Chronic Care through Clinical Research and
Translation (IMPACCT) at the University of Technology Sydney and the specialist expertise in measuring patient experience of the Bureau of Health Information
(BHI).

Bureau of Health Information. Measurement Matters – Measuring experiences of palliative and end-of-lifecare: Creating patient and carer question sets (229kb pdf). Sydney (NSW); BHI; 2022.

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