An international, multi-perspective survey examining the poststroke impact and unmet needs following young stroke

Oisín Cleary; Orla McBride; Jenny Davison; Niamh C Kennedy

doi:10.1080/09638288.2025.2494234

An international, multi-perspective survey examining the poststroke impact and unmet needs following young stroke

Research output: Contribution to journal › Article › peer-review

3 Citations (Scopus)

29 Downloads (Pure)

Abstract

Purpose
Research into young stroke survivors’ unmet needs is limited, despite this cohort accounting for ∼25% of the stroke population.

Methods
This international survey acts as the first to explore the post-stroke impact and unmet needs across three key stakeholder groups: young stroke survivors, young stroke carers and healthcare professionals. Surveys were distributed via stroke organization newsletters and support groups. Survey questions consisted of existing validated outcome measures, closed and open-ended questions. Survey responses underwent ANOVA testing and regression modelling on validated measures: Stroke Impact Scale (SIS), Adult Carer Quality of Life questionnaire (AC-QoL) and Zarit Burden Interview (ZBI).

Results
Survey data was collected from 316 young stroke survivors, 68 young stroke carers and 117 healthcare professionals. Young stroke survivors’ mean (SD) SIS score was 67.15 (25.17) and carers reported AC-QoL scores and ZBI scores of 70.16 (21.10) and 30.47 (19.20) respectively, indicating mid-range quality of life and burden. Common themes that arose in qualitative accounts highlighted impacts and unmet needs in psychosocial, occupational and quality of life support.

Conclusions
Participants reported a range of post-stroke impacts and unmet needs specific to a younger cohort. These should be considered when developing and providing services for young stroke survivors.

Original language	English
Pages (from-to)	7001-7009
Number of pages	9
Journal	Disability and Rehabilitation
Volume	47
Issue number	26
Early online date	15 May 2025
DOIs	https://doi.org/10.1080/09638288.2025.2494234
Publication status	Published (in print/issue) - 30 Dec 2025

Bibliographical note

Publisher Copyright:
© 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author, [NK], upon reasonable request.

Funding

No funding was received.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

young stroke
survey
stroke impact
QoL
stroke
Unmet needs;
long term needs
impact
Stroke
unmet needs
Humans
Survivors/psychology
Stroke Rehabilitation
Male
Caregivers/psychology
Young Adult
Health Services Needs and Demand
Adolescent
Quality of Life
Female
Adult
Surveys and Questionnaires
Stroke/psychology
Needs Assessment

Access to Document

10.1080/09638288.2025.2494234

An international multi-perspective survey examining the poststroke impact and unmet needs following young strokeFinal published version, 1.9 MBLicence: CC BY-NC-ND

Cite this

@article{081415e0057f4f31a1275283c77fb884,

title = "An international, multi-perspective survey examining the poststroke impact and unmet needs following young stroke",

abstract = "Purpose Research into young stroke survivors{\textquoteright} unmet needs is limited, despite this cohort accounting for ∼25\% of the stroke population. Methods This international survey acts as the first to explore the post-stroke impact and unmet needs across three key stakeholder groups: young stroke survivors, young stroke carers and healthcare professionals. Surveys were distributed via stroke organization newsletters and support groups. Survey questions consisted of existing validated outcome measures, closed and open-ended questions. Survey responses underwent ANOVA testing and regression modelling on validated measures: Stroke Impact Scale (SIS), Adult Carer Quality of Life questionnaire (AC-QoL) and Zarit Burden Interview (ZBI). Results Survey data was collected from 316 young stroke survivors, 68 young stroke carers and 117 healthcare professionals. Young stroke survivors{\textquoteright} mean (SD) SIS score was 67.15 (25.17) and carers reported AC-QoL scores and ZBI scores of 70.16 (21.10) and 30.47 (19.20) respectively, indicating mid-range quality of life and burden. Common themes that arose in qualitative accounts highlighted impacts and unmet needs in psychosocial, occupational and quality of life support. Conclusions Participants reported a range of post-stroke impacts and unmet needs specific to a younger cohort. These should be considered when developing and providing services for young stroke survivors.",

keywords = "young stroke, survey, stroke impact, QoL, stroke, Unmet needs;, long term needs, impact, Stroke, unmet needs, Humans, Survivors/psychology, Stroke Rehabilitation, Male, Caregivers/psychology, Young Adult, Health Services Needs and Demand, Adolescent, Quality of Life, Female, Adult, Surveys and Questionnaires, Stroke/psychology, Needs Assessment",

author = "Ois{\'i}n Cleary and Orla McBride and Jenny Davison and Kennedy, \{Niamh C\}",

note = "Publisher Copyright: {\textcopyright} 2025 The Author(s). Published by Informa UK Limited, trading as Taylor \& Francis Group.",

year = "2025",

month = dec,

day = "30",

doi = "10.1080/09638288.2025.2494234",

language = "English",

volume = "47",

pages = "7001--7009",

journal = "Disability and Rehabilitation",

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publisher = "Informa",

number = "26",

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TY - JOUR

T1 - An international, multi-perspective survey examining the poststroke impact and unmet needs following young stroke

AU - Cleary, Oisín

AU - McBride, Orla

AU - Davison, Jenny

AU - Kennedy, Niamh C

PY - 2025/12/30

Y1 - 2025/12/30

N2 - Purpose Research into young stroke survivors’ unmet needs is limited, despite this cohort accounting for ∼25% of the stroke population. Methods This international survey acts as the first to explore the post-stroke impact and unmet needs across three key stakeholder groups: young stroke survivors, young stroke carers and healthcare professionals. Surveys were distributed via stroke organization newsletters and support groups. Survey questions consisted of existing validated outcome measures, closed and open-ended questions. Survey responses underwent ANOVA testing and regression modelling on validated measures: Stroke Impact Scale (SIS), Adult Carer Quality of Life questionnaire (AC-QoL) and Zarit Burden Interview (ZBI). Results Survey data was collected from 316 young stroke survivors, 68 young stroke carers and 117 healthcare professionals. Young stroke survivors’ mean (SD) SIS score was 67.15 (25.17) and carers reported AC-QoL scores and ZBI scores of 70.16 (21.10) and 30.47 (19.20) respectively, indicating mid-range quality of life and burden. Common themes that arose in qualitative accounts highlighted impacts and unmet needs in psychosocial, occupational and quality of life support. Conclusions Participants reported a range of post-stroke impacts and unmet needs specific to a younger cohort. These should be considered when developing and providing services for young stroke survivors.

AB - Purpose Research into young stroke survivors’ unmet needs is limited, despite this cohort accounting for ∼25% of the stroke population. Methods This international survey acts as the first to explore the post-stroke impact and unmet needs across three key stakeholder groups: young stroke survivors, young stroke carers and healthcare professionals. Surveys were distributed via stroke organization newsletters and support groups. Survey questions consisted of existing validated outcome measures, closed and open-ended questions. Survey responses underwent ANOVA testing and regression modelling on validated measures: Stroke Impact Scale (SIS), Adult Carer Quality of Life questionnaire (AC-QoL) and Zarit Burden Interview (ZBI). Results Survey data was collected from 316 young stroke survivors, 68 young stroke carers and 117 healthcare professionals. Young stroke survivors’ mean (SD) SIS score was 67.15 (25.17) and carers reported AC-QoL scores and ZBI scores of 70.16 (21.10) and 30.47 (19.20) respectively, indicating mid-range quality of life and burden. Common themes that arose in qualitative accounts highlighted impacts and unmet needs in psychosocial, occupational and quality of life support. Conclusions Participants reported a range of post-stroke impacts and unmet needs specific to a younger cohort. These should be considered when developing and providing services for young stroke survivors.

KW - young stroke

KW - survey

KW - stroke impact

KW - QoL

KW - stroke

KW - Unmet needs;

KW - long term needs

KW - impact

KW - Stroke

KW - unmet needs

KW - Humans

KW - Survivors/psychology

KW - Stroke Rehabilitation

KW - Male

KW - Caregivers/psychology

KW - Young Adult

KW - Health Services Needs and Demand

KW - Adolescent

KW - Quality of Life

KW - Female

KW - Adult

KW - Surveys and Questionnaires

KW - Stroke/psychology

KW - Needs Assessment

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UR - https://www.scopus.com/pages/publications/105005511833

UR - https://pure.ulster.ac.uk/en/publications/081415e0-057f-4f31-a127-5283c77fb884

U2 - 10.1080/09638288.2025.2494234

DO - 10.1080/09638288.2025.2494234

M3 - Article

C2 - 40375551

SN - 0963-8288

VL - 47

SP - 7001

EP - 7009

JO - Disability and Rehabilitation

JF - Disability and Rehabilitation

IS - 26

ER -

An international, multi-perspective survey examining the poststroke impact and unmet needs following young stroke

Abstract

Bibliographical note

Data Availability Statement

Funding

UN SDGs

Keywords

Access to Document

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Cite this