COS-HSP

Core outcome sets for hemiplegic shoulder pain (HSP) in people with stroke

Summary

Up to 40% of people with stroke (PwS) experience shoulder pain (SP). It can lead to depression, disturbed sleep and increased dependence on caregivers/family for activities of daily living. NICE recommend that the cause of the person's shoulder pain should be identified so they can get the right treatment. We conducted a review of literature and survey of therapists and found that a range of outcomes (n=29) for pain are used. If all studies used the same outcomes, they could all be compared and combined, making best use of all the research. When a set of main outcomes has been agreed, it's called a 'core outcome set'. To decide which outcomes are important researchers need to get everyone's opinion and try to reach agreement, or "consensus", on the most important outcomes.

The aim of this research is to develop 'core outcome sets' for SP by reaching an agreement with experts (PwS with SP, carers, and therapists). This will be achieved by two approaches: 1) the Nominal Group Technique: key components for inclusion in the core outcome set will be identified via group consensus with PwS with SP, their carers/family members, researchers. 2) e-Delphi consensus (3-round process): a questionnaire-based process with patients, carers, healthcare professionals/researchers/experts. This will include developing a long list of possible outcomes that we would like to ask the experts to rank and include in the core outcome set.

Once developed, the core outcome set will be evaluated in clinical practice as part of a future NIHR grant.