Macular Disease Foundation Australia logo

    Research program: AMD and quality of life

    Volunteers sought to build a new computerised instrument.

    Quality of life is a concept we all understand, yet reliable quantification is complex and challenging.

    Dr Sheela Kumaran, recipient of MDFA Research Grant funding, is working to develop better tools to understand the effects age-related macular degeneration (AMD) has on people’s lives.

    AMD has significant impacts on 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.

    MDFA funding is supporting Dr Kumaran, a University of New South Wales researcher, to explore a better way to capture patients’ perception of their own wellbeing, and how they are affected by AMD.

    “This research is focused on developing a smart questionnaire that can precisely and comprehensively measure the quality-of-life impacts posed by AMD.”

    Dr Sheela Kumaran

    Previous research explored the lived experiences of people with AMD and thus built a solid foundation of patients’ perspectives for an improved questionnaire.

    The questionnaire covers eight important quality-of-life dimensions: activity limitations, symptoms, mobility, emotional wellbeing, health concerns, social impact, convenience, and economic impact.

    Dr Kumaran explains that the study aims to calibrate these questions on measurement scales using advanced psychometric analysis, with the aim of developing a tool with high reliability and minimal respondent burden.

    “This has huge potential in routine clinical practice and research to monitor the impacts of AMD over time and assess the effectiveness of interventions comprehensively.”

    Get involved

    If you have patients over the age of 50 with AMD who would be interested in participating in this study, please refer them to the information sheet and enrolment information.

    If your practice would like to support this research, contact Dr Kumaran at [email protected] or 02 9065 9964.

    About the Research Grants Program

    Dr Kumaran was one of eight researchers who received funding in the 2021 MDFA Research Grants Program announced in May 2021.

    MDFA has become the largest non-government source of research funding for macular disease in Australia, committing $5.1 million to 25 Australian researchers over the past decade.

    Posted: 21 February 2022

    More articles like this