Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions.
Gita Ramdharry, Valentina Buscemi, Annette Boaz and 10 others
PMID 36188845WHAT IT FOUND
Researchers and patients agreed that trials of exercise for rare neurological conditions should measure participation and self-efficacy, not just physical function.
They selected two questionnaires that capture daily life and confidence, which previous studies largely missed.
Key findings
01Stakeholders prioritized domains of physical well-being, psychological well-being, and participation in day-to-day activities as the most important outcomes to measure.
02A scoping review found that existing trials mostly measured body function and activity, with very little focus on participation, and no stakeholder involvement in selecting outcomes.
03The consensus was to use the Oxford Participation and Activities Questionnaire (Ox-PAQ) and the Sources of Self-Efficacy for Physical Activity scale to fill this gap.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The psychometric properties of the selected tools were not tested in rare neurological conditions; they were validated in more common conditions like Parkinson's and MS. Stakeholders with faster-progressing conditions or significant cognitive impairment were not consistently present at all workshops, relying on charity representatives to speak for them. The study proposes a core outcome set but does not prove that using these measures improves patient care or clinical outcomes. It is a consensus and development study, not a clinical trial, so it does not test the efficacy of any intervention.
Declared interests
The authors declared no commercial or financial conflicts of interest. The study was funded by an NIHR Programme Development Grant.
The easy way to misread this
Do not assume these two questionnaires are validated for every rare neurological condition. They were chosen for their conceptual fit and feasibility, but their accuracy in specific rare diseases has not been proven.