Clinical outcomes such as survival and recurrence, and clinician-reported outcomes including measures of patient function like the Barthel Index, have an important role in assessing effects of treatment and disease at both individual and population level. However, they do not capture patients' perspective of the consequences of disease on functional status, well-being, health-related quality of life, or symptom burden.1 Patient-reported outcome measure (PROM) questionnaires, completed by patients, provide a quantitative measure of patients' own experience of their health, including burden of disease and effects of treatments or interventions.1Broadly, PROMs are categorized as generic (such as the Short Form–36) or condition-specific (such as the Stroke-Specific Quality of Life Scale) (table). Ideally, patients should participate in all stages of PROM development, both as research partners and participants, to ensure relevance and acceptability.2 However, many PROMs are developed without patient input.3 In this issue of Neurology®, Saigle et al.4 report a scoping review of patient, family, and carer input into the development of PROMs for subarachnoid hemorrhage (SAH). They include studies that incorporate patient, family, and carer perspectives on priorities for SAH-specific PROM content, codevelopment, and evaluation.
ASJC Scopus subject areas
- Clinical Neurology