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 will answer that question through this study, which is being funded by an MDFA research grant.
Dr Kumaran is investigating 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.
The University of New South Wales researcher was one of eight successful applicants for MDFA’s latest round of research grants announced in May 2021, sharing in a total pool of $1 million.
Now, this MDFA funding is allowing Dr Kumaran to explore a better way of understanding the effect AMD has on people’s lives.
“This research is focused on developing a smart questionnaire that can precisely and comprehensively measure the quality-of-life impacts posed by AMD,” Dr Kumaran says.
Dr Kumaran’s project
Dr Kumaran’s research aims to develop technologically advanced questionnaires (item banks) to capture patients’ perception of their own wellbeing, and how they are affected by AMD.
The content for the questionnaire was identified in a previous research which explored the lived experiences of people with AMD and thus built on solid foundation of patient’s perspectives.
The questionnaire covers eight important quality-of-life dimensions: activity limitations, symptoms, mobility, emotional wellbeing, health concerns, social impact, convenience, and economic impact. There are 302 questions.
“This study aims to calibrate these questions on measurement scales using advanced psychometric analysis. Upon calibration, these can be administered using a computer adaptive testing (CAT) system using specialised algorithms. The CAT system will customise the questionnaire to individual’s level of impact and would utilise a small subset of questions from the calibrated item banks. Thus reliable estimates could be obtained with minimal respondent burden.”
“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.”
The project will also measure the cost of AMD on not only a person’s quality of life, but also on their back pocket. Participants will fill out a cost diary so Dr Kumaran’s team can examine the economic drain of the disease.
“This is important to understand the financial burden of AMD faced by individuals and households,” Dr Kumaran concludes.
About the Research Grants Program
Dr Kumaran received $49,674 over one year in the latest round of MDFA Research Grants Program funding, which was announced by His Excellency the Honourable David Hurley, Governor-General of Australia, at Admiralty House in Sydney in May 2021.
Since 2011, MDFA has become the largest non-government source of research funding for macular disease in Australia.
MDFA has committed $5.1 million in 25 Australian researchers over the past decade, including more than $1 million in the 2021 funding announcement.
Posted: 19 May 2021
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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