Top 10 research priorities relating to life after stroke--consensus from stroke survivors, caregivers, and health professionals

Abstract

Background: Research resources should address the issues that are most important to people affected by a particular healthcare problem. Systematic identification of stroke survivor, caregiver, and health professional priorities would ensure that scarce research resources are directed to areas that matter most to people affected by stroke.

Aims: We aimed to identify the top 10 research priorities relating to life after stroke, as agreed by stroke survivors, caregivers, and health professionals.

Methods: Key stages involved establishing a priority setting partnership; gathering treatment uncertainties from stroke survivors, caregivers, and health professionals relating to life after stroke (using surveys administered by e-mail, post, and at face-to-face meetings); checking submitted treatment uncertainties to ensure that they were clear, unanswered questions about the effects of a treatment/intervention; interim prioritization to identify the highest priority questions (objectively identified from ranking of personal priorities by original survey respondents); and a final consensus meeting to reach agreement on the top 10 research priorities.

Results: We gathered 548 research questions that were refined into 226 unique unanswered treatment uncertainties. Ninety-seven respondents completed the interim prioritization process, objectively identifying 24 shared priority treatment uncertainties. A representative group of 28 stroke survivors, caregivers, and health professionals attended a final meeting, reaching consensus on the top 10 research priorities relating to life after stroke. Six of the agreed top 10 research priorities related to specific stroke-related impairments, including cognition, aphasia, vision, upper limb, mobility, and fatigue. Three related to more social aspects of 'living with stroke' including coming to terms with long-term consequences, confidence, and helping stroke survivors and their families 'cope' with speech problems. One related to the secondary consequences of stroke and subsequent stroke prevention.

Conclusions: The top 10 research priorities relating to life after stroke have been identified using a rigorous and person-centered approach. These should be used to inform the prioritization and funding of future research relating to life after stroke.

Keywords: James Lind Alliance; life after stroke; prioritization; rehabilitation; research priority; stroke.