Assessment of the Ox-PAQ and SS-QOL with an aSAH population in the UK
Research type
Research Study
Full title
An assessment of the appropriateness and feasibility of two patient reported outcome measures: the Oxford Participation and Activities Questionnaire (Ox-PAQ) and the Stroke Specific Quality of Life questionnaire (SS-QOL) with patients who have experienced an aneurysmal subarachnoid haemorrhage (aSAH) in the UK
IRAS ID
245086
Contact name
Sarah Bargiela
Contact email
Sponsor organisation
Idorsia Pharmaceuticals Limited
Duration of Study in the UK
0 years, 3 months, 30 days
Research summary
The purpose of this study is to provide evidence on the appropriateness and feasibility of the Oxford Participation and Activities Questionnaire (Ox-PAQ) and Stroke Specific Quality of Life (SS-QOL) patient-reported outcome measures (PROMS) in the aneurysmal subarachnoid haemorrhage (aSAH) population. ASAH is a neurological condition with a high mortality and long-term neurological morbidity in 50% of survivors. ASAH commonly affects young patients causing loss of productive life years and resulting in long-term healthcare costs. These findings aim to inform whether the Ox-PAQ and SS-QOL measures are relevant to an aSAH population and to describe treatment outcomes that are important to people living with aSAH.
We are working with a medical research recruitment company to recruit approximately 20 people aged 18-70 years old living in the United Kingdom, who have experienced an aSAH in the past 3 to 24 months to take part during a 60-90 minute interview. Participants will be sent a detailed outline of the objectives of the research study and research contact details to allow them to ask any questions, prior to participating in the research.
During face-to-face or remote interviews, participants will complete the Ox-PAQ and SS-QOL measures and provide structured feedback on how easy or difficult it is to complete the measures. The measures will be presented in a digital format, within an iPad, where participants can scroll through and select answers for each question by tapping the screen. Through semi-structured interviewing, patient experiences of aSAH will also be explored. Participants will also be asked about outcomes in both measures that may or may not be relevant to them. These findings will then be used to identify gaps in the measures as well as deciding whether the two measures are feasible for use in a future clinical trial with aSAH patients.
REC name
London - Riverside Research Ethics Committee
REC reference
18/LO/0815
Date of REC Opinion
1 May 2018
REC opinion
Favourable Opinion