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

Area of Science:

• Palliative Care Research
• Health Services Research
• Cognitive Psychology

Background:

• Patient-reported experience measures (PREMs) assess healthcare experiences for service improvement.
• Cognitive demands of PREM completion for palliative care patients are not well understood.
• This study addresses how palliative care patients manage cognitive tasks when completing PREMs.

Purpose of the Study:

• To explore cognitive operations in palliative care patients completing a PREM.
• To identify challenges in comprehension, recall, judgement, and response.
• To inform future administration and design of PREMs for this population.

Main Methods:

• Qualitative approach using cognitive interviews with 'think aloud' and verbal probes.
• Participants: 15 individuals receiving specialist palliative care with stable disease (non-bedbound).
• Explored cognitive processes during completion of a 33-item PREM.

Main Results:

• Participants faced challenges across all four cognitive operations (comprehension, recall, judgement, response).
• Unfamiliarity with end-of-life concepts (e.g., declining treatment, advance care planning) was common.
• Difficulty with recall, hypothetical answers, and scale usage (3-point scale) were noted; open-ended items were manageable.

Conclusions:

• Palliative care patients experience significant challenges completing PREMs.
• Supports are necessary to enhance data quality and interpretability from PREMs in this group.
• Tentative recommendations for PREM design and administration are proposed pending further research.