An international survey to inform the development of a disease-specific health-related quality of life tool for cardiac sarcoidosis

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Introduction: The process to develop a comprehensive patient-reported outcome measure (PROM) should integrate several sources and techniques. The CARD-SARC, disease-specific PROM to assess the impact of cardiac sarcoidosis (CS) on health-related quality of life (HRQoL), incorporated several techniques for item-generation: theory and research findings, a systematic review, clinical observations, qualitative interviews and experts’ opinion. Methods: A clinimetric approach was conducted. The patient and public involvement (PPI) group guided the simultaneous triangulation to generate a preliminary item-list. An online survey was designed for international multidisciplinary CS-experts to support item reduction. The scoring options included a 7-point Likert scale (−3 ‘definitely no'; +3 'definitely yes'). A consensus meeting was planned to discuss results and resolve potential discrepancies. Results: The survey was completed by 26 CS-experts, including 11 pulmonologist, 7 cardiologists, 5 PPI-advisers and 3 specialist nurses. None of the potential items were excluded, and 19 were included based on the original score. After the consensus meeting, 42 additional items were recommended for the new tool. Additionally, 2 items were amended. In total, 61 items were included for pilot-testing of the CARD-SARC questionnaire. Conclusions: The combination of qualitative and quantitative sources during item-generation contributed to capture relevant HRQoL concepts for CS patients and clinicians. We advocate to integrate PPI and multidisciplinary clinicians during item reduction strategies for PROMs, ensuring that all relevant topics for patients and clinicians are included.

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