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 organisation 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), 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.
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 organisation 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), 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 |
|---|---|
| Journal | Disability and Rehabilitation |
| Publication status | Accepted/In press - 12 Apr 2025 |
Data Access Statement
The data that support the findings of this study are available from the corresponding author, [NK], upon reasonable request.Keywords
- young stroke
- survey
- stroke impact
- QoL
- stroke
- Unmet needs;
- long term needs
- impact
