Mindfulness training improves quality of life in neurofibromatosis
The randomised controlled trial results support a mindfulness program tailored to patients with neurofibromatosis in routine care.
What you should know about the effects of mindfulness training in neurofibromatosis:
- Neurofibromatoses (NF1, NF2 and schwannomatosis) are hereditary tumour predisposition syndromes with no curative treatment options.
- A mind-body training programme tailored to patients with neurofibromatosis (relaxation-response-resiliency programme) had a significantly positive long-term effect on physical and mental quality of life in an RCT
Development of an effective programme with relaxation and mindfulness techniques
The Relaxation-Response-Resiliency Programme (3RP) is an evidence-based mind-body training programme that teaches proven techniques for reducing stress and building resilience, and has been shown to reduce clinical symptoms and improve quality of life.2 It is reimbursed by most health insurers in the US. Participants learn to understand the connection between stress and physical or emotional symptoms and practice specific techniques to trigger the relaxation response, the body's own "stress buffer". The role of positive thoughts and beliefs is integrated as well as the importance of healthy eating, restful sleep and physical activity.
3RP is recommended for anxiety symptoms, insomnia or fatigue, headache disorders or migraines, gastrointestinal disorders, autoimmune disorders, depression, asthma or allergies and chronic pain or TMJ.2 Based on feedback from people with neurofibromatosis, a team from Boston further developed the 3RP programme and tailored it to the specific needs of this patient population. After good results from an initial pilot study with on-site, in-person instruction, they adapted the intervention for remote participation from home to overcome barriers to care and improve feasibility.3
Are there long-term benefits for physical and mental well-being?
In a global study of 228 people with neurofibromatosis (average age 43 years, 75% women), this programme showed increasing benefits over time, which were significant after one year. Participants were randomised 1:1 to the 3RP or control group.1
The intervention consisted of eight weekly virtual group sessions of 90 minutes each. Each session included a relaxation exercise, a review of previously learnt skills and an introduction to a new technique and ended with a short relaxation exercise. In the final session, all skills were repeated and graduates were particularly encouraged to continue practising the techniques after the programme had ended.
Once the regular activation of the relaxation response was established, participants were trained to contrast this experience (being in the relaxation response) with the experience of being in the stress response. Examples of seminar content include body awareness exercises (beginner's exercise: going through the body, "body scan"), yoga, meditations, guided imagination and breathing exercises. In more advanced sessions, the focus was also on avoiding impulsive quick reactions through greater awareness and recognising stress or warning signals as well as negative automatic thoughts.
The active control group received instead education about the disease and modules with information on stress and symptoms related to neurofibromatosis, sleep, nutrition, exercise, communication and health management.
What are the benefits for patients of continued mindfulness practice?
At baseline, immediately after the intervention and 6 and 12 months afterwards, scores for physical and mental health as well as for social relationships and the environment were recorded using a standardised questionnaire.
The participants in both programmes improved significantly in terms of physical and mental quality of life from the start of the study to the end of the intervention. However, the 3RP group was clearly superior to the control group 12 months after the start of the study in all primary and secondary endpoints. "The results support the introduction of 3RP-NF into routine care," the authors conclude.1
- Vranceanu, A.-M. et al. Effect of Mind-Body Skills Training on Quality of Life for Geographically Diverse Adults With Neurofibromatosis: A Fully Remote Randomized Clinical Trial. JAMA Network Open 6, e2320599 (2023).
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Relaxation Response Resiliency Program (3RP) (PDF).
- Lester, E. G., Gates, M. V. & Vranceanu, A.-M. Mind–Body Therapy via Videoconferencing in Patients With Neurofibromatosis: Analyses of 1-Year Follow-up. Annals of Behavioral Medicine 55, 77–81 (2021).