http://www.thelancet.com/journals/laneur/article/PIIS1474-4422%2812%2970029-7/fulltext
In November, 2011, Alessandro Liberati (1954—2012) called for a redefinition of the academic research agenda.1 Liberati supported initiatives such as the UK-based James Lind Alliance (JLA), which has developed models for bringing patients and health professionals together to identify research priorities.2
The JLA aims to ensure that those who undertake and fund health
research are aware of what gaps in knowledge matter most to patients,
carers, and health professionals.
Working
in collaboration with the JLA, from February, 2009, to November, 2011,
we completed a priority setting project that has defined a national
research agenda relating to life after stroke.
JLA methods involve four key stages:3
(1) gathering of treatment uncertainties, (2) checking of existing
research evidence, (3) interim prioritisation to identify the priorities
of relevant individuals and stakeholder groups, and (4) a final
consensus meeting to reach agreement on the top ten research priorities.
We supplemented standard JLA methods of postal and email surveys with
novel strategies to ensure that we enabled equal participation of stroke
survivors, carers, and health professionals throughout Scotland. We
developed these strategies to address barriers to participation, such as
those caused by living in remote geographical locations (Scotland's
highland and islands) and stroke-related impairments and disabilities.
Strategies included face-to-face visits at stroke support groups and
clubs, production of information in several formats (eg, an
aphasia-friendly information sheet and audio presentation), and
provision of information at key national health professional and stroke
meetings.
We collected 548 treatment
uncertainties (260 from stroke survivors) which, after checking research
evidence, were reduced to 226 unique unanswered research questions. 97
people participated in the interim prioritisation process, leading to
the identification of 24 shared top priorities. At a final consensus
meeting, a representative group of stroke survivors, carers, and health
professionals unanimously agreed their top ten priorities for future
research (panel). The webappendix and the JLA website provide additional methodological details.
Panel
Top ten research priorities relating to life after stroke
- What are the best ways to improve cognition after stroke?
- What are the best ways to help people come to terms with the long-term consequences of stroke?
- What are the best ways to help people recover from aphasia?
- What are the best treatments for arm recovery and function, including visual feedback, virtual reality, bilateral training, repetitive task training, imagery or mental practice, splinting, electromechanical and robot-assisted arm training, and botulinum toxin?
- What are the best ways to treat visual problems after stroke?
- What are the best ways to manage or prevent fatigue?
- What are the best treatments to improve balance, gait, and mobility, including physiotherapy, gait rehabilitation, visual and auditory feedback, electrical stimulation, different types of ankle foot orthoses, and electromechanical assisted gait training?
- How can stroke survivors and families be helped to cope with speech problems?
- What are the best ways to improve confidence after stroke, including stroke clubs or groups, offering support, one-to-one input, and re-skilling?
- Are exercise and fitness programmes beneficial at improving function and quality of life and avoiding subsequent stroke?
Seven
of the top ten priorities are related to stroke-related impairments,
such as cognitive problems, aphasia, mobility problems, vision
impairment, fatigue, and lack of fitness. However, also included in the
top ten are three questions related to the indirect consequences of
stroke, covering the issues of coming to terms with life after stroke,
helping stroke survivors and carers to cope with speech problems, and
confidence after stroke. Stroke survivors and carers made eloquent and
convincing arguments for the importance of these issues, highlighting,
for example, that there was little point in addressing stroke-related
impairments in communication or mobility if one did not have the
confidence to participate in daily or recreational activities.
These
priorities relating to life after stroke have been generated through a
unique, comprehensive, rigorous, and inclusive process, with equal
participation from stroke survivors, carers, and health professionals.
Here, the research agenda relating to life after stroke has been defined
by people to whom it matters most and should now inform the activities
of the stroke research community and research funding bodies.
The
authors declare that they have no conflicts of interest. This project
was supported by funding provided by the Scottish Governement's National
Advisory Committee for Stroke. This project was undertaken by the
Nursing Midwifery and Allied Health Professions (NMAHP) Research Unit,
which is supported by the Scottish Government Health Directorate's Chief
Scientist Office. The work presented here represents the views of the
authors and not necessarily those of the funding bodies.
Web Extra Material
Supplementary webappendix
PDF (183K)
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