Clinicians and scientists are beginning to understand something that people with vision impairment have known for some timeâ”€simple measure of vision on a letter chart does not capture the impact of vision loss on quality of life, nor does it give us a complete picture of the benefits of treatments or services.
We now understand that it is important to assess the bigger and more holistic picture. The World Health Organization recognised this in 1948 with their definition of health as being: “… a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity”.
Quality of life is complex and means different things to different people. So, it is no surprise that coming up with a tool to measure it is complex and challenging. Most agree that quality of life encompasses a person’s ability to perform activities of daily living, interactions with others, emotional wellbeing and independence, from their own perspective. Vision scientists in the low vision and blindness sector have been working hard over the past few decades to develop questionnaires that capture these aspects of life accurately and reliably. This is not only important to the individual and their supporters, but to service planners and for funding.
A number of world leaders in this field came together at the 11th International Conference on Low Vision – Vision2014, recently held in Melbourne. It was clear that better questionnaires now exist and that further improvements are on the horizon with computer adaptive technology. We will need these tools for use with new health service systems, like the National Disability Insurance Scheme, and for evaluating many promising new treatments and technologies, like the bionic eye.
However, perhaps one of the most important conversations I had was not in one of the conference symposia, but over coffee during a break. A colleague and friend with vision impairment explained to me that when he was asked to complete such questionnaires, it was through an interviewer. The questions by necessity are personal. People who are sighted usually get to complete questionnaires independently, which respects their privacy and very likely elicits more accurate answers. Too often, we have neglected to afford those with vision impairment the same independence and privacy through accessible questionnaire formats.
It is incumbent upon clinicians and researchers working in the low vision and blindness sector to find out what quality of life means for an individual with vision impairment, in a way that respects their independence and privacy, and that we strive to support them to achieve the highest possible quality of life.