Background
Patient reported experience measures (PREMs) are internationally recognised as instruments for measuring health service quality from the patient/carer perspective and gaining prominence as valuable methods for informing areas for improvement in health care provision. Understanding which PREM is best aligned for use with patients who have palliative care needs, and their carers, is required.
Aim
To identify existing PREMs developed for use with patients with advanced and serious illness, and their carers, and map available questions to the key domains of quality palliative care.
Methods
Rapid review of existing questionnaires and questionnaire items that measure experience of care quality in patients with palliative care needs or their carers.
Results
Preliminary analysis (final results will be presented in May) identifies more than 45 PREMs and more than 900 individual items addressing patient or carer experience for those living with palliative care needs. The majority of PREMs addressed more than one domain of importance. However, the following domains have very few measures available to inform experience of care quality: technical competence; patient safety; cleanliness to support infection control; carer burden; and financial affairs.
Discussion
Our review identified more than 45 questionnaires that include items for measuring experience of care in patients with palliative care needs and/or their carers. Distribution of items across domains of importance was very uneven, ranging from 321 available items for effective communication and shared decision making down to two for ‘patient safety’. The relative attention by survey questionnaire developers to different domains is unlikely to be a consistent reflection of how these domains are weighted in importance by patients and carers.
Conclusions
Enabling consumer input in relation to palliative care quality, requires careful consideration due to the unique requirements of this population. We have a clear understanding of what is important for quality care from the patient and carer perspective. The next step in progressing this research and clinical practice agenda is to identify PREM tools that closely align with the noted areas of importance and are practical for implementation. This is critical in enabling the collection of meaningful data with the capacity to drive change.