Dr. Gopinath Madheswaran, BS Opt, M.Optom, PhD, FBDO
Research Associate and Lecturer, Acchutha Eye Care & Institute of Optometry,
Erode, Tamil Nadu, India
Founder, Opto Research Consultancy Services
Yes, you read it right. I heard these during a busy clinic ten years ago from my patient diagnosed with “Age-related macular degeneration (AMD)”. So, some basic information about AMD before explaining my research work. Good eyesight is essential for an independent daily life. We all see best at the centre of the eye, medically termed the macula. Risk factors for AMD include ageing, obesity, smoking and genetics. People with AMD tend to lose their central vision in advanced forms. (1) The pictures (A, B) below show how a person sees with central vision loss while seeing people on the street (A) and reading a text (B).
A. Viewing people (Street scene), B. Printed material
Back to the title phrase, “Are you smiling at me?? I can’t see it anymore” said my patient who lost central vision due to AMD. That statement triggered my transition from a clinician to a researcher. Since then, I have been working closely with those who have lost their central vision to understand the difficulties faced and ways to help improve their quality of life. Soon after, I decided to pursue higher education studies. As part of my postgraduate studies, I took up a challenging project experimenting with developing a computer-based rehabilitation tool to improve peripheral vision since no central vision is intact. (2) However, it was a proof of concept, and I could not bring it to reality for various reasons. By then, I was done with my postgraduate studies and offered the chance to take up a research fellow position at the same institution. Fortunately, this project also revolved around developing innovative methods for rehabilitating people with advanced AMD. The project ended in a few years with a fruitful patent application and publication. (3) Later, I took up four long years of rollercoaster ride named “PhD studies”. I am sharing some interesting and important findings from my PhD research work here.
The literature search revealed some basic questions concerning central vision loss were unanswered from the Indian perspective. Specifically, the difficulties encountered in daily living activities, the steps taken to overcome the problems, and other stopped activities. There were many research methods to understand these issues; I decided to interview those with central vision loss due to the lack of a standardised tool to assess the quality of life in the Indian scenario. The process was time-consuming and exhausting because of scrutinising thousands and thousands of medical records to identify eligible participants to be contacted to participate. Because advanced AMD happens in the later stages of life, very few eligible persons were found; I then obtained their consent to participate.
I interviewed them individually at their homes, as I wanted to observe them in their daily routine and environment. There were 10 (5 males and 5 females), all over 70 years old. In the past decade, they had all suffered from loss of central vision, and most had complaints of diabetes and hypertension. They all had varied professional backgrounds, retired government officials, homemakers, or business owners; some had changed their professions due to vision problems. The responses were analysed after the interview. I have explained the reasons for this particular study and how I researched it. Let me share the heart of this story, i.e., the results in the context of my participants’ difficulties and suggested changes. The four categories that evolved from the interviews were: 1. Difficulties in daily life, 2. Difficulties with lifestyle and social bonding, 3. Psychological consequences, 4. Strategies for dealing with difficulties. The sketch (C) below explains the most important responses in short. (4)
C. Consequences of poor central vision loss
Now that I have discussed the study’s results, what is next? This research will help eye care professionals plan customised rehabilitation for those who have lost their central vision. This will also help educate family members to support their better lifestyle and bring back social life to improve their mental well-being. As discussed earlier, there is no standardised tool to measure the quality of life after central vision loss. These results will help develop a set of questions as a questionnaire which can support eye care professionals to quantify the difficulties and support them. (5)
So, did I get the answer to that phrase, “Are you smiling at me?? I can’t see it anymore!!” Is it the end of the rollercoaster ride?? Actually, no. We understand that identifying faces is a common difficulty after central vision loss. Face recognition is also a part of emotion identification; smiles, anger, and sadness are among them. Now that we know the exact issues with loss of central vision, how do we help? What happens to emotion identification and categorization after the loss of central vision? The next ride begins…
References
- Bourne, R. R. A., Steinmetz, J. D., Saylan, M., Mersha, A. M., Weldemariam, A. H., Wondmeneh, T. G., … Vos, T. (2021). Causes of blindness and vision impairment in 2020 and trends over 30 years, and prevalence of avoidable blindness in relation to VISION 2020: The Right to Sight: An analysis for the Global Burden of Disease Study. The Lancet Global Health, 9(2), e144–e160. https://doi.org/10.1016/S2214-109X(20)30489-7
- G. Madheswaran, V. Ramesh, S. Bhat, K. G. Nayak, P. C. Siddalingaswamy and A. Nabeel, “Computer based rehabilitation for patients with central vision loss,” 2017 International Conference on Advances in Computing, Communications and Informatics (ICACCI), Udupi, India, 2017, pp. 2069-2072, doi: 10.1109/ICACCI.2017.8126150
- Asjad Nabeel, P., Ve, R. S., Siddalingaswamy, P. C., Murari, S., Ray, A., Bhat, S., & Madeswaran, G. (2019). Development and validation of functional based grading for macular diseases. Journal of Computational Methods in Sciences and Engineering, 19(2), 533-540.
- Madheswaran, G., Ramesh, S. V., Pardhan, S., Sapkota, R., & Raman, R. (2021). Impact of living with a bilateral central vision loss due to geographic atrophy-qualitative study. BMJ Open, 11(7). https://doi.org/10.1136/bmjopen-2020-047861
- Gopinath, M. (2023). Exploring visual adaptations in persons with central scotoma. http://hdl.handle.net/10603/466844
Author:-
Dr Gopinath Madheswaran BS Opt, M.Optom, PhD, FBDO (O/S)
Dr Gopinath Madheswaran is an Optometrist who works as a Research Associate and Lecturer at Acchutha Eye Care & Institute of Optometry, Erode, Tamil Nadu, India. He also heads the Acchutha Low Vision Clinic, Erode. He completed his BS Opt from Elite School of Optometry in 2013 with the best intern award and continued to work as a research and teaching assistant at Sankara Nethralaya Chennai. He completed his MOptom with the best outgoing gold medal award from the Manipal Academy of Higher Education, Manipal, in 2017. He received his Fellowship Diploma in British Dispensing Optics (FBDO) in 2014. He is also a probationary Indian examiner for FBDO. He continued to pursue his PhD in low vision rehabilitation, focusing on Central vision loss. His doctoral thesis is “Explore the visual adaptations in persons with central vision loss”. He teaches optics-related programmes, ocular diseases, low vision, and research methodology. He has guided various undergraduate and postgraduate research theses. He has worked in multiple national/ international research grants to develop “Innovative rehabilitative eye care technologies”. He has presented at numerous national and international conferences as an invited speaker and presented his research works. He has over seven publications to his credit. He is also the founder of Opto Research Consultancy Services- “Simplifying Eye & Vision Science Research.”
Good read! Thanks for sharing the heartfelt experience.
wonderful to read your thoughts on applying it to patient rehabilitation. That’s the purpose of eye care! Eagerly awaiting your progress in rehabilitation of Advanced stage AMD patients. Hope to hear from you soon!