Psychometric Properties of a Patient-Centered Quality of Life Questionnaire After Subarachnoid Hemorrhage: A New Approach

Background: Subarachnoid hemorrhage (SAH) is a severe condition associated with high morbidity and mortality. However, many individuals classified as having favorable functional outcomes still report persistent cognitive deficits, fatigue, emotional disturbances, reduced social participation, and impaired return to work. Standard tools used to assess health-related quality of life (HRQoL) after SAH, such as the Medical Outcomes Short-Form Health Survey and the Stroke-Specific Quality of Life scale (SSQoL), may not fully capture these individual perspectives. Objective: To evaluate the reliability and construct validity of the Patient-Generated Index (PGI) for HRQoL assessment after SAH. Methods: Individuals who experienced SAH completed the PGI. We then tested construct validity by correlation with the SSQoL. We tested reliability through intra- and interobserver intraclass correlation coefficients (ICCs). The International Classification of Functioning, Disability and Health framework (ICF) was used to classify reported health-related issues. Results: The PGI showed moderate correlation with the SSQoL (r=0.53) and excellent intra- and interobserver reliability (ICC = 0.91; ICC = 0.94). ICF linking identified 146 categories, mainly in Participation (55), Body Functions and Body Structures (52), and Activities (27). Emotional and behavioral challenges, such as fear, fatigue, and difficulty with work and social roles, were prominent. Immediate family was the only environmental factor cited. Conclusion: The PGI is a valid, reliable, and patient-centered tool for assessing HRQoL after SAH, offering valuable input for rehabilitation planning.