Mind-Body Intervention for Neurofibromatosis
By Ashley Maltz, MD, MPH
West Holistic Medicine, Austin, TX
Dr. Maltz reports she is a speaker for the Texas Medical Association Physician Health and Wellness Committee.
SYNOPSIS: Participants in a randomized, controlled trial of a videoconferencing mindfulness intervention for neurofibromatosis experienced improvement in measures of physical and psychological quality of life when compared to placebo.
SOURCE: Vranceanu AM, Riklin E, Merker VL, et al. Mind-body therapy via videoconferencing in patients with neurofibromatosis: An RCT. Neurology 2016;87:806-814.
Neurofibromatoses (NF; NF1, NF2, and schwannomatosis) are a set of progressive, genetic neurologic conditions for which there is no known cure. The severity of illness varies greatly from person to person; however, most patients experience some discomfort at the site of these non-cancerous growths. Some will experience debilitating symptoms and a rare set will develop life-threatening symptoms. All patients with NF may experience pain, anxiety, depression, and other factors leading to a decreased quality of life (QoL).1
Mindfulness techniques have shown positive results in lowering patients’ levels of anxiety, depression, and chronic pain in various populations.2,3 The intervention in this study was structured around elicitation of the relaxation response — a state of calm awareness first documented by Harvard physician researcher Herbert Benson in 1975.4 Vranceanu et al studied a videoconferencing mindfulness intervention in patients with NF for these symptoms. The authors randomized 63 patients with NF to one of two videoconferencing mind-body programs — the Relaxation Response Resiliency Program for neurofibromatosis (3RP-NF) or an attention placebo control (Health Enhancement Program for NF [HEP-NF]).
The intervention consisted of eight videoconferencing sessions with study participants via Skype. The intervention group received instruction in three core components: 1) 15 mindfulness and relaxation techniques; 2) appraisal and coping — cognitive coping techniques for stress and medical symptoms; and 3) growth enhancement, which included acceptance, positive psychology, and problem-solving techniques that foster resiliency in the face of new symptom development and uncertainty of prognosis. The control group used an adapted program called the HEP-NF that focused on educating patients with NF about symptoms and stress related to NF. The modules taught nutrition, exercise, and communicating with medical providers. Primary outcome measures of the study included physical health and psychological QoL. These measures were assessed with the World Health Organization Quality of Life abbreviated instrument at time 0, within one week after completion of the intervention, and six months after the study was completed. Secondary outcome measures were social relations and environment QoL, depression, anxiety, pain intensity, and pain interference.
Compared to the placebo control group, the intervention group experienced a trend toward greater improvement in physical (95% confidence interval [CI], 0.29-15.10; P = 0.04) and psychological health QoL (95% CI, 0.17-11.34; P = 0.056). Participants in the intervention group also experienced significantly greater improvements in social relations QoL and environmental QoL (95% CI, 4.10-17.24; P = 0.002 for social relations QoL, and 95% CI, 3.50-11.15; P < 0.001 for environmental QoL). Their anxiety scores also significantly decreased in comparison to the control group (95% CI, -3.96 to 0.69; P = 0.006).
Post-treatment effects on physical and psychological QoL were maintained six months after the intervention by the 3RP-NF group; however, P values were not specified for this analysis. These results were unchanged from post-test analyses. Post-treatment effects on secondary outcome measures were maintained after six months; however, the results were also unchanged from the post-test analysis. Patients in the 3RP-NF group showed a significant decrease in pain interference over those in the control group after six months (95% CI, -2.44 to -0.20; P = 0.02). No adverse effects were reported for the intervention.
These findings are extremely promising for patients suffering from NF, regardless of type. It is a low-cost, safe, and effective modality to reduce negative physical and psychological aspects in this population, and there were no adverse effects associated with the intervention. Given the small sample size and homogeneity of the sample, the data cannot be extrapolated to larger populations. However, patients suffering from chronic pain and anxiety may experience a benefit in QoL measures if the intervention is applied. More research with larger numbers of participants across a variety of chronic illnesses is warranted.
REFERENCES
- Wang DL, Smith KB, Esparza S, et al. Emotional functioning of patients with neurofibromatosis tumor suppressor syndrome. Genet Med 2012;14:977-982.
- Andersen TE, Vaegter HB. A 13-weeks mindfulness based pain management program improves psychological distress in patients with chronic pain compared with waiting list controls. Clin Pract Epidemiol Ment Health 2016;12:49-58.
- Hilton L, Hempel S, Ewing BA, et al. Mindfulness meditation for chronic pain: Systematic review and meta-analysis. Ann Behav Med 2016; Sep 22. [Epub ahead of print].
- Benson H, Beary JF, Carol MP. The relaxation response. Psychiatry 1974;37:37-46.
Participants in a randomized, controlled trial of a videoconferencing mindfulness intervention for neurofibromatosis experienced improvement in measures of physical and psychological quality of life when compared to placebo.
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