Stroke survivor follow-up in a national registry: Lessons learnt from respondents who completed telephone interviews

Abstract

The Australian Stroke Clinical Registry (AuSCR) collects patient-reported outcomes at 90–180 days post-stroke. During telephone interviews, stroke survivors or their carers/family members often explain why they did not respond to a previously mailed survey. This feedback is useful to explore respondents’ experiences of the follow-up process. Three main reasons for not returning surveys included: health-related time constraints, confusion about survey questions, and stroke denial. Such information is helpful in improving procedures for clinical quality disease registries and researchers using postal questionnaires.