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

Karen M Barclay-Moss; Natasha A Lannin; Brenda Grabsch; Monique Kilkenny; Dominique A Cadilhac

doi:10.1177/1747493018806190

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

Int J Stroke. 2019 Feb;14(2):112-114. doi: 10.1177/1747493018806190. Epub 2018 Oct 26.

Authors

Karen M Barclay-Moss¹, Natasha A Lannin^{2

3}, Brenda Grabsch¹, Monique Kilkenny^{1

4}, Dominique A Cadilhac^{1

4}

Affiliations

¹ 1 Stroke Division, The Florey Institute of Neuroscience and Mental Health, University of Melbourne, Heidelberg, VIC, Australia.
² 2 School of Allied Health, College of Science, Health and Engineering, La Trobe University, Bundoora, VIC, Australia.
³ 3 Alfred Health, Melbourne, VIC, Australia.
⁴ 4 Stroke & Ageing Research, Department of Medicine, School of Clinical Sciences at Monash Health, Monash University, Clayton, VIC, Australia.

PMID: 30362905
DOI: 10.1177/1747493018806190

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.

Keywords: Follow-up; clinical registry; quality improvement; stroke; survey methods.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Australia
Denial, Psychological
Female
Humans
Interviews as Topic
Male
Patient Participation / psychology
Patient Participation / statistics & numerical data*
Quality Improvement
Registries*
Stroke / epidemiology*
Stroke / psychology
Surveys and Questionnaires
Survivors*