Patients' experiences of responding to a Patient-Reported Outcome Measure for palliative care: a mixed method study

Area of Science:

• Palliative Care
• Health Informatics
• Patient-Reported Outcome Measures

Background:

• Growing global interest in utilizing Patient-Reported Outcome Measures (PROM) within palliative care settings.
• Introduction of PRO-Pall, a novel PROM developed by the Danish Health Data Authority for nationwide implementation.
• PRO-Pall is utilized for patients diagnosed with heart, lung, kidney diseases, and cancer.

Purpose of the Study:

• To investigate patient experiences with the PRO-Pall tool.
• To assess the utility of PRO-Pall in palliative care consultations within non-specialized settings.
• To explore how PRO-Pall aids in preparing patients for discussions about their palliative care needs.

Main Methods:

• A multicentre, mixed-methods approach combining quantitative (n=270) and qualitative (n=17) data.
• Quantitative data collected via structured questionnaires assessing relevance, ease of use, and perceived benefits.
• Qualitative data gathered through semi-structured interviews exploring patient experiences and integration into clinical discussions.

Main Results:

• High patient satisfaction with PRO-Pall: 85% found it relevant, 85% found it easy to use.
• PRO-Pall aided symptom awareness (61%) and consultation preparation (70%).
• Qualitative data confirmed relevance and convenience, emphasizing the need for active discussion of responses.

Conclusions:

• Patients perceive PRO-Pall as relevant, appropriate, and user-friendly.
• The effectiveness of PRO-Pall hinges on healthcare professionals actively integrating patient responses into consultations.
• Without active integration, PRO-Pall risks becoming mere documentation rather than a tool for patient-centered communication.