THE IMPACT OF STROKE SEVERITY ON INFORMAL CAREGIVER BURDEN: A TARGETED LITERATURE REVIEW
Author(s)
Elzbieta Olewinska, PhD1, Beata Lukiewicz, MSc1, Konrad Gawlik, MSc1, Aurélie Millier, PhD2, Luke Bamber, MSc3.
1Clever-Access, Krakow, Poland, 2Clever-Access, Paris, France, 3Bayer AG, Wuppertal, Germany.
1Clever-Access, Krakow, Poland, 2Clever-Access, Paris, France, 3Bayer AG, Wuppertal, Germany.
OBJECTIVES: Informal caregivers have a critical role in supporting stroke survivors; however, the relationship between stroke severity and caregiver outcomes has not been comprehensively synthesised. This targeted literature review (TLR) evaluated the impact of stroke severity on caregiver burden, quality of life (QoL), utilities, mental health and caregiving demands.
METHODS: A targeted search of MEDLINE (Ovid) was conducted in September 2025. Studies published from 2010 onwards reporting caregiver outcomes stratified by stroke severity, disability or dependency were eligible. Outcomes of interest included caregiver burden, caregiving time, QoL, utility values, depression, anxiety and stress.
RESULTS: Of 3040 records identified, 38 studies met the inclusion criteria. Studies were conducted across Asia (n=19), Europe (n=12), North America (n=3), Africa (n=3) and South America (n=1). Caregiver burden was the most frequently reported outcome (n=21), followed by QoL (n=8), depression/anxiety (n=6), stress (n=5) and caregiving time (n=4). Stroke severity was primarily assessed using the Barthel Index (n=19), modified Rankin Scale (mRS; n=17), and National Institutes of Health Stroke Scale (n=10). Increasing stroke severity was consistently associated with poorer caregiver outcomes. Zarit Burden Interview scores increased from 18.1 for mild disability (mRS 0-2) to 37.2 for moderately severe disability (mRS 4). Caregivers of patients with mRS 3-5 provided substantially more weekly care than those of patients with mRS 0-2 (59 vs 10 hours). Utility values decreased from 0.85 in mild stroke to 0.76 in severe stroke, while spouse utilities were lower for dependent versus independent survivors (0.69 vs 0.77). Greater severity was also associated with lower QoL and increased psychological distress.
CONCLUSIONS: Stroke severity is a key driver of caregiver burden, reduced QoL and utilities, and increased caregiving demands. These findings highlight substantial caregiver spillover effects and support the inclusion of caregiver outcomes in economic evaluations and healthcare decision-making.
METHODS: A targeted search of MEDLINE (Ovid) was conducted in September 2025. Studies published from 2010 onwards reporting caregiver outcomes stratified by stroke severity, disability or dependency were eligible. Outcomes of interest included caregiver burden, caregiving time, QoL, utility values, depression, anxiety and stress.
RESULTS: Of 3040 records identified, 38 studies met the inclusion criteria. Studies were conducted across Asia (n=19), Europe (n=12), North America (n=3), Africa (n=3) and South America (n=1). Caregiver burden was the most frequently reported outcome (n=21), followed by QoL (n=8), depression/anxiety (n=6), stress (n=5) and caregiving time (n=4). Stroke severity was primarily assessed using the Barthel Index (n=19), modified Rankin Scale (mRS; n=17), and National Institutes of Health Stroke Scale (n=10). Increasing stroke severity was consistently associated with poorer caregiver outcomes. Zarit Burden Interview scores increased from 18.1 for mild disability (mRS 0-2) to 37.2 for moderately severe disability (mRS 4). Caregivers of patients with mRS 3-5 provided substantially more weekly care than those of patients with mRS 0-2 (59 vs 10 hours). Utility values decreased from 0.85 in mild stroke to 0.76 in severe stroke, while spouse utilities were lower for dependent versus independent survivors (0.69 vs 0.77). Greater severity was also associated with lower QoL and increased psychological distress.
CONCLUSIONS: Stroke severity is a key driver of caregiver burden, reduced QoL and utilities, and increased caregiving demands. These findings highlight substantial caregiver spillover effects and support the inclusion of caregiver outcomes in economic evaluations and healthcare decision-making.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PT24
Topic
Clinical Outcomes
Topic Subcategory
Clinical Outcomes Assessment
Disease
Cardiovascular Disorders (including MI, Stroke, Circulatory)