Improving the methods for patient-reported experience measures in palliative care: findings from a cognitive interview study

Tim Luckett, Claudia Virdun, Angela Rao, Lilian Daly, Nadine Hackl, Alexander Willems, Jane L. Phillips

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)
62 Downloads (Pure)

Abstract

Background: Patient-reported experience measures (PREMs) are questionnaires that ask patients about their experience of healthcare to inform service improvements. It is unclear how palliative care patients manage the cognitive demands of completing PREMs, or how this can best be supported. This study aimed to explore cognitive operations among people with palliative care needs when completing a PREM focused on the care domains known to be important to this patient population in order to inform future administration of questionnaires for this purpose. Methods: A qualitative approach was taken, using cognitive interviews. Participants were people receiving specialist palliative care with stable disease who were not bedbound. Interviews used ‘think aloud’ and verbal probes to explore the cognitive operations of comprehension, recall, judgement and response to a 33-item PREM, drafted using a standard process employed by the New South Wales Bureau of Health Information. Analysis proceeded first within-and then cross-cases to explore patterns. Results: Fifteen people participated, all of whom had cancer except one with motor neuron disease. Six discussed inpatient care, and nine community care. Participants encountered challenges with all four cognitive operations. Many participants were unfamiliar with end-of-life care concepts like declining treatment and advance care planning. Participants often struggled to remember, answered hypothetically, or digressed beyond the focal setting. Few participants used the mid-point on a 3-point scale. However, all participants could complete two open-ended items on care aspects they regarded as ‘best’ or ‘most needs improving’. Conclusions: Palliative care patients find PREMs challenging to complete and require supports to improve the quality and interpretability of data. Pending further research, tentative suggestions are made for PREM design and administration for this patient population.

Original languageEnglish
Pages (from-to)2275-2284
Number of pages10
JournalAnnals of Palliative Medicine
Volume11
Issue number7
DOIs
Publication statusPublished - 28 Jul 2022
Externally publishedYes

Keywords

  • Palliative care
  • qualitative research
  • survey methods

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