Virtual mind-body treatment for geographically diverse youth with neurofibromatosis: A pilot randomized controlled trial

Objective: To examine the feasibility, acceptability, preliminary effect, and durability of a mind-body video-conferencing program for youth with neurofibromatosis (Resilient Youth with NF; RY-NF) against an experimental educational control (Health Education for NF; HE-NF) via a single-blind pilot RCT. Method: Adolescents with NF (N = 51; age 12-17) completed baseline assessments and were randomized (1:1/to intervention or experimental educational control). The multiple primary outcomes were physical health and psychological quality of life (QoL). Secondary outcomes were social relations QoL, environmental QoL, depression, anxiety, pain intensity and pain interference. Posttreatment and at 6-month follow-up assessments were collected. Results: Forty-five adolescents (88%) completed posttreatment, and 37 (82%) completed 6-month follow-up. Satisfaction was high in both conditions. The RY-NF showed greater baseline to posttreatment improvements in physical health QoL (10.18; 95% CI: 0.47-19.90; p = .040), psychological QoL (9.45; 95% CI: 0.78-18.11; p = .033), social relations QoL (13.19; 95% CI: 1.87-24.50; p = .023), and environmental QoL (9.26; 95% CI: 3.49-15.49; p = .002), compared to the HE-NF (between group effects). Improvements were clinically meaningful and maintained through follow-up. Conclusions: The RY-NF was well accepted, highly feasible and resulted in sustained improvement in QoL, demonstrating adolescents are receptive to and benefit from learning resiliency skills in groups via live video.