Exploring AMD caregivers' perspective- focus groups
Research type
Research Study
Full title
Development of core outcomes for age-related macular degeneration (AMD) interventions- caregivers' perspective
IRAS ID
181662
Contact name
Augusto/AAB Azuara-Blanco
Contact email
Sponsor organisation
Queen's University Belfast
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Randomised controlled trials (RCTs) are widely employed interventional studies in medicine, yet many times their outcomes are presented inconsistently. The COMET Initiative (Core Outcome Measures for Effectiveness Trials) suggests that a solution for that issue would be preparation of a core outcome set (COS)- a minimal group of outcome measures relevant to different group of stakeholders (e.g. clinicians, patients, carers) that would be implemented in each RCT in a particular area. Our overall aim is to prepare a COS for age-related macular degeneration (AMD) RCTs. As a first step to develop a COS for AMD, we conducted a systematic review that confirmed variability in AMD trials' outcome selection. Our current step encompasses involvement of different stakeholders' groups in focus groups: patients (IRAS project ID:165409) and caregivers (current project) such as family members and friends helping AMD patients with their everyday living. Knowledge of caregivers' perspective on living with, treatment and outcomes for AMD is a key consideration when building up a COS, because they may not only evaluate existing outcomes, but also their experience may be translated into new outcomes. In our current focus group study, caregivers will be invited to the Centre for Experimental Medicine at Queen's University Belfast for a one-hour discussion. We plan to arrange three focus groups with approximately 8 participants each. Two researchers will be present to help facilitate discussion. Participants will be asked about their experience related to their help brought to AMD patients, observations of living with and treatment of AMD as well as about AMD study outcomes and their importance. We hope our findings will help create an accurate AMD COS and that they will provide valuable information for future AMD research.
REC name
London - Westminster Research Ethics Committee
REC reference
15/LO/1452
Date of REC Opinion
19 Aug 2015
REC opinion
Favourable Opinion