An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): A protocol for developing the long-form measure

Abstract

Background: Current measures of health-related quality of life are neither sufficiently sensitive or specific to capture the complex and heterogenous nature of the recovery and survivorship associated with cardiac arrest. To address this critical practice gap, we plan a mixed-methods study to co-produce and evaluate a new cardiac arrest-specific patient/survivor-reported outcome measure (PROM). Methods: International guidelines have informed a two-stage, iterative, and interactive process.Stage one will establish what is important to measure following cardiac arrest. A meta-ethnography of published qualitative research and a qualitative exploration of the experiences of survivors and their key supporters will inform the development of a measurement framework. This will be supplemented by existing, extensive reviews describing concepts that have previously been measured in this population. Focus groups with survivors, key supporters, and healthcare professionals, followed by further interviews with survivors and key supporters, will inform the iterative refinement of the framework, candidate items, and PROM structure.Stage two will involve a psychometric evaluation following completion by a large cohort of survivors. Measurement theory will inform: the identification of items that best measure important outcomes; item reduction; and provide robust evidence of measurement and practical properties. Discussion: An international, collaborative approach to PROM development will engage survivors, key supporters, researchers, and health professionals from study commencement. Successful co-production of the cardiac arrest survivorship and health-related quality of life (CASHQoL) measure will provide a robust, relevant, and internationally applicable measure, suitable for completion by adult survivors, and integration into research, registries, and routine care settings.Ethical approval: University of Warwick Biomedical & Scientific Research Ethics Committee (BSREC 22/20-21 granted 10/11/20).