Understanding stroke and spasticity: patient and caregiver experiences and quality-of-life impact

Poststroke spasticity (PSS) is a common sensorimotor disorder following a stroke, presenting in up to 38% of patients 1 year after first stroke. Owing to its heterogeneous and progressive presentation, PSS represents a significant challenge both in its effect on patients and in its clinical management. The objective of this US real-world survey was to assess the impact of self-reported PSS symptoms, gathering patient and caregiver perspectives on awareness of PSS and its treatments, the extent of shared decision-making, and the quality of life (QoL) impact of PSS.

This study was a noninterventional, cross-sectional, web-based survey of patients (or their caregivers) within 1 year of stroke resulting in hemiparesis. Participant demographics and survey responses were summarized using descriptive analyses. Subgroup analyses were performed between patients and caregivers and by sex, age group, and type of last stroke. A short version of the Stroke-Specific QoL (SS-QoL) scale was used to assess patient QoL.

The study included 221 patients and 62 caregivers answering on behalf of patients. Almost all patients (98%) experienced PSS symptoms after their most recent stroke, with 59% experiencing ≥3 symptoms. Approximately half (56%) of patients who reported PSS symptoms were aware of drug treatments; of these, most (95%) had received ≥1 drug treatment. Among treated patients, 68% had been involved in the initial drug selection. Over half of patients reported difficulties carrying out daily activities, but caregivers were more likely to report difficulty showering or bathing unassisted (84%) compared with the patient group (58%); fatigue was reported by most patients (84%). The overall median (IQR) SS-QoL score was 2.5 (2.0-2.9) and was higher in the patient group (2.5; 2.1-2.9) than the caregiver-reported group (2.1; 1.8-2.8). Our real-world survey findings demonstrate a considerable impact of PSS on patient QoL, largely driven by fatigue and limitations in daily activities. Furthermore, subgroup analysis revealed significant differences between patient and caregiver perceptions of PSS symptoms and their impact.

This study highlights the need for increased awareness of PSS among healthcare providers, patients, and caregivers to promote timely diagnosis and improve management with targeted, multidisciplinary interventions that enhance patient outcomes and support caregivers.