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Self-management program for AMD patients fights depression, improves outlook
Patients who participated in a self-management pilot program learned how to cope with their disease and continue their lives.
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LA JOLLA, Calif. – A self-management program can help to alleviate depression and significantly improve the ability of patients with age-related macular degeneration to function, according to a study here.
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NameResearchers at the Shiley Eye Center at the University of California-San Diego devised the program, based partially on existing self-management programs in other fields and extensive interviews with AMD patients. They evaluated the program in a randomized study, which showed that patients’ ability to function and quality of life could be improved even with advanced disease.
“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 Stuart I. Brown, MD, one of the study’s authors. “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. 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 to them and what they identified as their most pressing needs.”
The study authors believe this AMD self-management program is the first of its kind implemented for an older population affected by an ophthalmic condition.
The study
Patients were randomized either to a 6-week self-management course, to a group asked to view a series of tapes of health lectures or to a control group that received no intervention.
In the course, researchers used self-management tactics that have proved beneficial in other debilitating conditions, such as arthritis, diabetes mellitus, chronic obstructive pulmonary disease and cancer. The self-management program was composed of cognitive and behavioral components. The first segment presented lectures by professionals in ophthalmology, rehabilitation, nutrition, exercise physiology and low-vision optometry. Patients learned about the AMD disease process, about visual aid devices, how to verbalize their visual disability and how to maintain their independence.
The behavioral component of the program promoted problem-solving skills. Patients in the course met in small groups with professional leadership and shared experiences about overcoming obstacles they had faced.
“This is a component we believe could be offered more widely as part of the treatment for the disease,” said Barbara Brody, MPH, clinical professor of ophthalmology and first author of the study.
Depression and AMD
The researchers found that the self-management group showed significant improvement in measures of mood and function compared with controls. The changes were significantly greater for the depressed subjects than for those who were not depressed.
Depression was not part of the criteria for the study. The researchers said about 24% of the 231 patients evaluated met the criteria for major or minor depression. These patients showed the most improvement in their function after the self-management program, Ms. Brody said.
“Depression can contribute to the disability that people experience with AMD. People who feel less stress also may be more likely to comply with treatment and have a better functional outcome,” she said.
Ms. Brody said understanding the nature of their vision loss was very difficult for many patients, adding to their frustration and stress.
“For many patients, nobody had helped them work this through,” she said.
Patients in the study were over age 60 years; mean age was 81 years. Their visual acuity was 20/60 or worse in the better eye; most were legally blind in the other, Ms. Brody said. Patients were evaluated through an interview before and after the program. The interviews were scored based on several measures. The primary measure was the Profile of Mood States, a self-report. The secondary measure was the National Eye Institute Visual Function Questionnaire, which relates patients’ quality of life to their level of vision.
Other measures used were the Duke Social Support Index, the Life Orientation Test-Revised and the Macular Degeneration Self-Efficacy Questionnaire. Depression was also determined by using the DSM-IV criteria. Visual acuity and medical history were assessed along with questions about patients’ levels of education and ways of life.
Ms. Brody believes ophthalmologists could implement the concepts explored in this study.
“We believe the program is readily implemented in the clinical setting, and we do recommend that it be implemented with measurements to evaluate its effectiveness. We also recommend further testing of the method,” she said.
“We used standard cognitive behavioral training methods adapted for this disease. We believe this was the reason why people benefited, but the exact dynamic is not yet known,” she added.
For Your Information:Reference:
- Stuart Brown, MD, and Barbara Brody, MPH, can be reached at the Shiley Eye Center, Dept. of Ophthalmology, University of California-San Diego, 9415 Camous Point Drive, La Jolla, CA 92093-0946; (858) 534-9671; fax: (858) 822-1754; e-mail: brody@eyecenter.ucsd.edu.
- Brody BL, Roch-Levecq AC, et al. Self-management of age-related macular degeneration and quality of life. Arch Ophthalmol. 2002;11:1477-1483.