Survey examines health care preferences of young stroke survivors
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A survey of young stroke survivors found that these patients see interventions outside of health care settings, such as tip sheets from other young survivors, as “widely acceptable and sometimes preferred” for addressing their needs.
Young stroke survivors — classified as patients aged 18 to 55 years in this study — also viewed face-to-face contact with a health care professional as a “popular” strategy for meeting their needs.
“For the last 5 years, we’ve been working to understand the gaps in current care for younger people with stroke and how best to address their needs,” Julie Bernhardt, PhD, AM, FAHMS, co-head of the stroke theme at the Florey Institute of Neuroscience and Mental Health and head of the AVERT Early Intervention Research Program in Australia, told Healio Neurology. “This study helped us understand the range of service options young people with stroke want to help meet their needs and the factors that might influence their choices.”
The cross-sectional study used an online survey to gather data from adults aged 55 years and younger with a history of stroke. Participants self-reported demographic information and stroke history; they also completed the Young Stroke Needs Screening Tool and a questionnaire about preferences for meeting needs. The researchers created the screening tool and the questions alongside young people who had had a stroke “to make sure we were asking the right questions and testing a tool they felt was relevant,” Bernhardt told Healio Neurology.
The final analysis comprised 171 participants (women, 68%; mean age, 45 years; had caretaker, 27%) with varying modified Rankin Scale (mRS) scores (mRS 1, 36%; mRS 2, 23%; mRS 3, 27%, among others) and levels of education (secondary or less, 26%; trade certificate, 16%; university education, 53%), including some with other conditions (hypertension, 22%; high cholesterol, 14%; heart disease, 5%; diabetes, 4%). The researchers obtained responses from participants of different ages, nationalities, levels of disability and length of time since stroke, making the study “relevant to a broad population of stroke survivors and health care professionals who care for them.”
The most frequently reported need was in the body and mind domain (94%; 95% CI, 90% to 97%), with the fewest patients (65%; 95% CI, 58% to 72%) reporting a need in the Information domain.
“Where young people live (remote versus urban), their age and sex and the severity of their ongoing problems is likely to change their views on the best method of meeting their needs,” Bernhardt said.
Patients most frequently indicated a preference for a list of tips from other young stroke survivors (67%; 95% CI, 60% to 74%) and talking to a health care professional face-to-face (60%; 95% CI, 52%-67%), whereas only 26% (95% CI, 19% to 33%) indicated a preference for telehealth consultation, which researchers wrote was “the least popular.”
The results “make sense,” according to Bernhardt.
“We often talk about patient-centered care, but matching the right approach to the right patient isn’t simple,” she said. “I think a key takeaway of this work is that people want some choice in how to meet their needs and traditional approaches may not be the best model moving forward.”
In addition, “young people affected by stroke are underserved at present,” Bernhardt continued.
“We’ll use this information, together with our previous research, to work to build a dedicated young stroke service,” she said.