Top 10 Research Priorities Relating to Life after Stroke - Consensus from Stroke Survivors, Caregivers, and Health Professionals
For which topic were research priorities identified?
life after stroke
In which location was the research priority setting conducted?
Europe - United Kingdom
Why was it conducted at all?
Research resources should address the issues that are most important to people affected by a particular health care 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.
What was the objective?
to identify the top 10 research priorities relating to life after stroke, as agreed by stroke survivors, caregivers, and health professionals
What was the outcome?
a ranking list of 10 research questions
How long did the research prioritization take?
February 2010 - November 2011
Which methods were used to identify research priorities?
How were the priorities for research identified exactly?
Step 1: setting up PSP: steering group established, stakeholders and partner organizations identified. Step 2: gathering treatment uncertainties: accepting submissions of treatment uncertainties in any format (electronic, mail, or verbally), additionally relevant published research questions and priorities included, in total 548 treatment uncertainties collected. Step 3: data processing: questions formatted using PICO, duplicate questions merged, indicative questions formulated, 228 indicative questions checked against evidence, resulting in 226 unique unanswered treatment uncertainties. Step 4: interim ranking: survey asking participants to identify and rank their personal 10 most important priorities, top 24 questions moved forward. Step 5: final prioritization: workshop: blend of small group rankings and small group discussions and aggregate rankings and plenary discussion
Which stakeholders took part?
Stroke patient and caregiver groups, stroke research and delivery of care organizations, and community, long-term care and key health professional groups. Survey: 106 participants: 15 stroke groups/clubs, 22 individual stroke survivors, 4 individual carers, 4 health professional groups/meetings, 61 individual health professionals. Interim ranking: 97 participants: 42 stroke survivors/caregivers and 55 health professionals. Workshop: 28 participants: 16 stroke survivors/caregivers, 12 health professionals: stroke physician (n=1), nurse (n=1), physiotherapist (n=2), occupational therapist (n=2), speech and language therapist (n=2), orthotist (n=1), orthoptist (n=1), neuropsychologist (n=1), and social worker (n=1).
How were stakeholders recruited?
All identified groups and organizations were e-mailed project information. Project information, response forms, and prepaid return envelopes were posted to the membership of patient groups. The audio version of the presentation was made available online. In order to facilitate involvement of stroke survivors and caregivers throughout all geographical regions of Scotland and to reach people who may not receive and/or respond to e-mail or postal information, a member of the steering group visited existing stroke support groups/clubs in each of the 11 National Health Service (NHS) geographical locations on the Scottish mainland, and the project team arranged for information leaflets to be distributed at groups meetings on all three NHS Scottish Island locations. In order to facilitate involvement of a range of health professionals working in stroke care, including those who may not receive or respond to e-mail information, the project team attended a number of national meetings and conferences. Consensus meeting participants were purposively selected to provide a representative group of 20-30 stroke survivors, caregivers, and health professionals.
Were stakeholders actively involved or did they just participate?
Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of a stroke survivor, a caregiver, a nurse, a physician, an allied health professional, a researcher and representatives from key national stroke charities/patient organizations, and from the JLA. The members defined the scope of the partnership and developed a protocol detailing the methods to be used.