Study provides guidance on how to measure the quality of palliative care using patient-reported experience measures (PREMs)
Patient-reported experience measures or PREMs are a kind of questionnaire used to measure quality of healthcare from the perspective of those receiving it. Our earlier systematic review found 44 PREMs had been developed for hospital-based palliative care up until September 2022. But little research has explored which kinds of PREM might be optimal or how these should be administered.
We asked questions via interviews and focus groups to 19 inpatients with palliative care needs, 8 family members, and 10 clinical team members, recruited across three wards in an Australian metropolitan hospital.
The advice we received was that:
- PREMs for people with palliative care needs ought to be tailored to the needs of this population;
- PREMs should appraise whether the needs of families have been met in addition to those of patients;
- PREMs for inpatients with palliative care needs ought to be easy to use, brief and incorporate space for free text alongside each question;
- PREM data need to be specific enough to inform process change and/or care provision; and
- Patients and families require meaningful feedback to encourage PREM completion.
Opinions varied on when and how often PREMs should be administered, whether patients/families should complete PREMs by themselves or with assistance, and whether in paper or electronic form.
Some patients and family members were worried about giving honest feedback for fear their care might become worse in retaliation.
“I think patients need help to understand that it’s okay to be honest, and they need help and support to be guided that they’re not going to be judged by what they’re saying and it’s not going to come back at them - it won’t affect their treatment - but I don’t know that they feel that.” Consumer representative group
Recommendations arising from this work are that hospitals:
- adopt a brief PREM (less than 12 items) that either: provides feedback on a small number of domains of importance for quality palliative care; and/or provides a deeper dive into one domain of importance for quality inpatient palliative care; and
- clearly define how they will use the PREM to enable change so that patients and families can be confident their time won’t be wasted when responding.
Read the publication about this study:
Dr Claudia Virdun is an experienced specialist palliative care nurse at Flinders University. She also holds and Adjunct position with IMPACCT at UTS. Her research is focused on how to enable patients with palliative care needs, and their families / carers to provide feedback about the quality of care received to facilitate improvement based on what matters most for people nearing the end of their lives.
Associate Professor Tim Luckett is a Senior Lecturer with IMPACCT. He brings a perspective at the intersection between health, social and implementation sciences that is needed to inform multi-disciplinary, person-centred care.