Reported effects of non-traditional treatments and complementary and alternative medicine by retinitis pigmentosa patients

Background: Benefits of complementary and alternative medicine (CAM)-related interventions have been demonstrated for patients with chronic, systemic diseases in which stress, anxiety and disability are prevalent. Subjects with retinitis pigmentosa (RP) commonly indicate that they have 'good' and 'bad' vision days, stating that stress causes a decrease in vision and that vision improves when the stress is alleviated. We assessed CAM use by RP patients and its perceived effectiveness. Methods: We enquired about nine CAM areas: meditation, mind-body therapies, yoga, movement therapies, energy therapies, acupuncture, massage therapy, spirituality/religion and herbal therapies/aromatherapy. Ninety-six RP patients with any level of vision completed an anonymous internet survey. Results: Ninety-five per cent of respondents tried at least one of the nine CAM areas. Seventy-five per cent have used nutritional supplements, including lutein (47 per cent), bilberry (32), vitamin A palmitate (36) and docosahexaenoic acid (23 per cent). Some tried meditation (47) and yoga (31 per cent). Stress and anxiety levels were reported as improved in 93, 92 and 87 per cent of those who used yoga, meditation and mind-body therapies, respectively. Many of those who tried mind-body therapies (40) or acupuncture (50 per cent), used it with a desire to fight RP. Vision was subjectively affected in 65 per cent of acupuncture users and from 20 to 35 per cent of the users of the other CAM areas. Those who indicated that their vision was affected by at least one type of CAM (35 per cent) were statistically significantly more likely to require magnification to read (that is, they had lost more vision and RP had progressed), than those who did not believe vision was impacted (59 versus 84 per cent). Conclusions: RP patients are using CAM and are experiencing some impact on vision and physical/emotional well-being. Clinicians and researchers should be aware of its use. Clinical trials with CAM interventions are necessary to attempt to validate these findings.