Exploring patients' perspective- core outcomes for AMD studies v.1
Research type
Research Study
Full title
Development of core outcome measures for age-related macular degeneration (AMD) randomised controlled trials (RCTs)- patients' perspective
IRAS ID
165409
Contact name
Augusto/AAB Azuara-Blanco
Contact email
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Patients expect efficient and effective treatment from their doctors. Appropriate choice of intervention should be based on well-informed decisions.To make well-informed decisions, high quality evidence is essential.The most reliable study when evaluating the efficiency of an intervention is a randomised controlled trial(RCT). However, to fulfil all criteria of well-designed high standard study, trials have to encompass meaningful outcomes. In our recent systematic review, we identified a variety of outcomes used in AMD trials. This heterogeneity makes comparisons between studies impossible. To address this issue, AMD outcomes should be standardised.The guarantee of including appropriate outcomes in an RCT on a particular field is development of a core outcome set (COS). COS reduces outcome reporting bias, limits heterogeneity in outcome reporting and facilitates comparisons between studies on the same topic. Relevant outcomes can be chosen only when stakeholders such as researchers, clinicians and patients are involved. Involvement of patients in choosing key outcomes for AMD trials will help researchers understand which aspects of AMD treatment and which outcomes are important from a patient perspective. Participants will be invited to the Low Vision Clinic in Belfast for a one-hour focus group discussion. We plan to arrange three focus group discussions with approximately 8 patients with AMD each. Two researchers will be present to help facilitate discussion. Participants will be asked about their experience related to their AMD treatment and which outcomes are the most important and informative in their opinion. Our findings will be used to create COS for AMD trials and will provide valuable information for future AMD research.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
15/EE/0046
Date of REC Opinion
2 Mar 2015
REC opinion
Further Information Favourable Opinion