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In this study, people with AMD participated weekly in a structured two-hour group session designed to provide information and support, and enhance patients’ problem-solving skills. They were tested before and after the program, with scores compared with AMD patients who did not participate in the program.
For those who completed the self-management course, scores showed that their quality of life was enhanced, and those who began the study with measurable depression had marked improvement in their mood and function. The results are reported in the November Archives of Ophthalmology.
“Many people with macular degeneration experience not only the disability of vision loss due to this incurable disease; they also become anxious and depressed, which contributes to their inability to carry out life activities,” said the study’s senior author, Stuart I. Brown, M.D., director of the Shiley Eye Center and chair of ophthalmology at the UCSD School of Medicine. “With this program, we inform them, challenge them, and teach them how to manage their lives and deal with their vision loss. The amount of improvement was significant. At the end of the process they realized their capabilities and were much more confident and able to cope.”
AMD is the most common cause of vision loss in older adults, affecting an estimated one out of five individuals over the age of 65. The incurable disease is caused by degeneration of cells, and in some forms blood vessel leakage, in the macula, which is the area in the retina responsible for central vision. With advanced AMD, the patient loses central vision but retains peripheral vision. Researchers are exploring treatments to slow the breakdown of cells and prevent vision loss, but to date there is no effective preventive therapy or disease treatment.
Shiley Eye Center specialists were prompted to develop this program based on other studies showing that such self-management programs have proven successful in enhancing quality of life in patients with incurable chronic conditions such as heart disease and cancer. The AMD self-management program was created based on extensive interviews with macular degeneration patients about their questions, challenges and the personal issues they were facing, often without any information about resources available to help them. For some of these AMD patients, emotional distress and depression were further complicating the disease.
“Many patients tell us that losing their sight is the worst thing that has ever happened to them, and these are people who have experienced other diseases, sometimes serious illness. Sight is arguably the most important sense in people’s lives,” said Brown. “We worked with various experts to develop this program after asking people what they could and couldn’t do, how they felt about what was available for them, and what they identified as their most pressing needs.”
The six-week program covered various topics, and included a 10 minute exercise program with exercises designed for AMD patients to give them more confidence in their abilities, said Barbara Brody, M.P.H., clinical professor of ophthalmology and director of Community Ophthalmology, Outreach and Education at the Shiley Eye Center, and first author of the Archives paper. Based on their research with patients, the team designed the self-management program to bring people together in small groups with professional leadership, where AMD patients could share their experiences. Solutions were incorporated into the structure of the program while they learned skills to cope and improve their health and quality of life.
A total of 231 volunteers with advanced AMD were selected for the study, ranging in age from 60 to 99, with an average age of almost 81. About 24 percent of these individuals tested for major or minor depression. They were randomly divided into three groups, with 86 going through the self-management program, 74 receiving tape recorded health lectures to listen to on their own, and 71 serving as a control group, placed on a waiting list for the program.
“Each session included elements of what we wanted to cover,” Brody said of the program. “We talked frankly about the disease and gave them up-to-date information, which they said they wanted. We discussed how the disease affected them and what was personally meaningful to them. We used problem-solving vignettes and projects for them to do at home to increase their confidence. We addressed barriers, strategies for overcoming those barriers, and we helped them with techniques for communication and transportation, basic skills for self-sufficiency that become a tremendous challenge for those with limited vision.”
A seemingly simple exercise like having the patient tell someone about the disease helped patients develop a clear way of describing their limitations in order to ask for assistance when needed, and decline assistance when they were capable of performing a task, she said. Although AMD sufferers have partial sight, they can’t read signs or fill out forms, for example.
“How to get people to understand the nature of the vision loss was a very difficult issue for them, adding to their frustration and stress, and for many, nobody had helped them work this through,” she said.
Using a variety of standard tests to measure mood, visual function, self-confidence, and outlook, the researchers documented a drop in depression and anxiety, and an increase in self-efficacy, in the self-management group compared with the other two groups. The improvement was especially significant in patients who tested as depressed before the program. In fact, the depressed patients who were on the waiting list became more depressed over the testing period.
“These early results suggest that we need to pursue intervention with a larger group of people with AMD, perhaps focusing on those who are depressed, to see what long-term impact we can have on their emotional well-being,” said Robert Kaplan, chair of UCSD’s department of family and preventive medicine and a co-author of the study.
Brown would like to see this pilot program offered widely, both to broaden the testing and to provide an option for AMD patients who are seeking assistance and support services but don’t know where to go.
“Programs like this should serve as one component of treatment for this mentally and physically debilitating disease,” he said. “There are various programs available offering some of the aspects of this one, and more traditional programs for people who are completely blind, but nothing is widely available for this age group with these specific vision problems. I would like to see structured self-management programs offered and their success measured in every community. As this disease becomes ubiquitous, many with low-vision are going to need intervention and assistance.”
This study was supported in part by a grant from the National Eye Institute. Co- authors also included Anne-Catherine Roch-Levecq, Ph.D., and Kellie Maclean of the department of ophthalmology; and Anthony C. Gamst, Ph.D., of the departments of family and preventive medicine and neurosciences at UCSD.
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