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A. K. Kiser, L. Yang, G. Dagnelie; Reported Benefits of Complementary and Alternative Medicine (CAM) Use by Retinitis Pigmentosa (RP) Patients. Invest. Ophthalmol. Vis. Sci. 2007;48(13):3722. doi: https://doi.org/.
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Benefits of CAM-related interventions have been demonstrated for patients with chronic, systemic diseases in which stress, anxiety and disability are prevalent. RP subjects commonly indicate that they have "good" and "bad" vision days, stating that stress caused a decrease in vision, and that vision improved when the stress was alleviated. We assessed CAM use by RP patients and its perceived effectiveness.
We inquired about 9 CAM areas: Meditation, Mind-Body Therapies, Yoga, Movement Therapies, Energy Therapies, Acupuncture, Massage Therapy, Spirituality/Religion, and Herbal Therapies/Aromatherapy. A survey posted on an anonymous internet forum was completed by 96 RP patients, with any level of vision, located throughout the US and internationally.
95% of respondents tried at least one of the 9 CAM areas. 75% have used nutritional supplements, including lutein in 47%, bilberry in 32%, Vit. A Palmitate in 36%, and DHA in 23%. 47%, 31% and 17% of respondents tried meditation, yoga and mind-body therapy, respectively. Stress and anxiety levels were reported as improved in 85-95% of those who used meditation, yoga and mind-body therapies. ~90% or more of those who tried yoga, massage, movement or energy therapies used it for physical well-being, while ~65-80% of those who used the other CAM areas, except acupuncture, did for emotional well-being. 63% of those who tried acupuncture indicated it might help, can't hurt. ~70% had never heard of movement or energy therapies. Aromatherapy/herbal therapy was most associated with unknown benefits or lack of information by 26%. 40% and 50% of those who tried mind-body therapy and acupuncture, respectively, used it with a desire to fight RP, whereas this reason applied to ~15-35% of those who used the other CAM areas. Vision was subjectively improved in 65% of acupuncture users; ~20-35% of the users of the other CAM areas. A subgroup analysis of those who felt that vision was affected by at least one type of CAM (35% of respondents) revealed they were more advanced in RP progression, i.e., less likely to read without magnification than those who didn’t believe vision was impacted (59% vs. 84%), and more likely to have a longer diagnosis of RP, >20 years (55% vs. 41%). They were also more likely to report being in excellent health (37% vs. 18%), but there were no significant age or gender differences.
RP patients are using CAM and they attribute some impact upon vision and physical/emotional well-being; therefore clinicians and researchers should be aware of its use. Clinical trials with CAM interventions are necessary to attempt to validate these findings.
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