Measuring the impact of AMD on quality of life
We know how age-related macular degeneration (AMD) affects your vision. But what about your quality of life?
Dr Sheela Kumaran is answering that question through this study, which was funded by an MDFA research grant in 2021.
Dr Kumaran investigated the independence, emotional wellbeing, and all-round quality of life of people living with AMD – Australia’s leading cause of blindness and severe vision loss.
This research focused on developing a smart questionnaire that can precisely and comprehensively measure the quality-of-life impacts posed by AMD.Dr Kumaran
Dr Kumaran’s findings
Currently available questionnaires and survey tools are limited in content, outdated and burdensome to complete and interpret. To bridge this gap, Dr Kumaran’s team used a novel approach called item banking, technologically advanced questionnaires. The researchers calibrated 302 questions to develop eleven scales measuring important Quality of Life aspects: activity limitations, reading limitations, lighting related limitations, driving limitations, mobility, emotional impact, inconveniences, health concerns, economic impacts and the frequency and severity of visual symptoms.
Another component of the study assessed the economic impact of all AMD types. This is important information to understand the financial burden of AMD on individuals and households.
The next phase of the research will involve developing a computer adaptive testing (CAT) system which will customise the questionnaire, using fewer questions from the item banks to assess an individual’s level of impact from AMD.
The end goal of the study is to provide health professionals and researchers a user-friendly tool to capture patients’ perception of their own wellbeing, and how they are affected by AMD.
This has huge potential in routine clinical practice and research to monitor the impacts of AMD, assess the effectiveness of interventions to improve services and care and ultimately quality of life for people with AMD.Dr Kumaran
About the Research Grants Program
Dr Kumaran received $49,674 over one year in the 2021 round of MDFA Research Grants Program funding. Since 2011, MDFA has become the largest non-government source of research funding for macular disease in Australia.
MDFA has committed $5.9 million to 35 Australian researcher projects over the past decade, including more than $1 million in the 2021 funding announcement.
Posted: 18 September 2023
This has huge potential in routine clinical practice and research to monitor the impacts of AMD longitudinally and to assess the effectiveness of interventions comprehensively.Sheela Kumaran
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