Co-Designing a Quality of Life Survey for Mesothelioma: Qualitative and Cognitive Interview Findings.

CONTEXT: Mesothelioma is a rare, incurable, and aggressive cancer and "patient-reported outcome" (PRO) data from people living with mesothelioma (PLM) are lacking.

OBJECTIVES

To examine PLM's views about, and cognitive processes whilst answering, a draft quality of life and care survey, to inform survey refinements and implementation into the Victorian Mesothelioma Outcome Registry (VMOR), Australia.

METHODS

Constructivist (qualitative) and co-designed study. An expert-developed draft PRO survey comprised the: EORTC QLQ-C30 health-related quality of life question-set, Australian Hospital Patient Experience Question Set (AHPEQS), and demographic / mesothelioma background questions. Telephone semi-structured and "think aloud" interviews examined PLM's survey views and cognitive processes during responses. Concurrent inductive thematic analysis (survey views) and deductive content analysis (cognitive processes) proceeded.

RESULTS

PLM believed that the survey would produce information important for improving PLM healthcare but made many content and layout suggestions to reduce respondent confusion, inappropriate answers, and burden. Free-text response options were strongly recommended. Survey content was generally nondistressing but could elicit challenging memories and need for support. Several PLM displayed challenges in executing cognitive processes during survey responses, notably on whether EORTC-QL30 referred to general or mesothelioma-only related health and which hospital care experience the AHPEQS referred to.

CONCLUSION

A refined co-designed VMOR PRO survey should yield patient-meaningful qualitative and quantitative evidence to guide the Registry's leadership in what issues are important to patients and their clinical team. While co-designed "viewpoint seeking" and cognitive interviewing studies can improve valid survey outcomes, PRO responses may also be affected by extraneous circumstances, including comorbidities.