Neurofibromatosis (NF) is a chronic neurogenetic condition that affects over two million people worldwide. Characterised by tumours growing on nerves, including the brain and spinal cord, it is associated with chronic pain, headaches, visual and hearing impairments, and sometimes malignant tumours.
Given the lack of biomedical treatments for NF, the “Relaxation Response Resiliency for NF” (3RP-NF) programme was developed to improve the psychosocial outcomes of adults living with NF.
The study involved 228 participants, who were randomly assigned to either the 3RP-NF intervention or a health education control group. Conducted virtually, the study was a single-blind randomised controlled trial (RCT). The participants, aged between 18 and 70, underwent several assessments focusing on quality of life, depression, and anxiety at the beginning, after the intervention, and at 6- and 12-month intervals.
The findings were published in the Journal of Clinical Psychology.
The 3RP-NF programme consisted of eight weekly 90-minute sessions, which were delivered via video conferencing. The programme integrated mind-body techniques, cognitive-behavioral therapy, and positive psychology principles, with the aim of enhancing mindfulness, coping strategies, and optimism. The content of each session was specifically tailored to address the challenges and individual stressors related to NF.
The study found that coping strategies had the most significant impact on improving the quality of life for NF patients. This indicates the importance of coping in enhancing life quality among individuals with NF.
Mindfulness had the largest effect on reducing depression and anxiety among participants. Optimism also contributed significantly to these improvements, although coping strategies did not show a substantial impact in this area.
The programme successfully targeted mindfulness through activities like meditation and mindful movement. Coping was enhanced through relaxation exercises and recognition of stress, while optimism was fostered through activities like positive storytelling.
These findings suggest that interventions for NF patients should focus on coping and mindfulness to improve overall well-being. The results also support the inclusion of optimism-building strategies in psychosocial interventions for NF.
The study underscores the importance of further research into these mechanisms in broader medical contexts and tailoring interventions based on individual patient goals.
The 3RP-NF programme represents a significant advancement in the treatment of NF-related psychosocial issues. By effectively targeting mindfulness, coping, and optimism, it offers a new and effective approach for interventions aimed at similar conditions, potentially improving the lives of millions of NF patients around the world.