BACKGROUND: Neurofibromatosis (NF) is a rare genetic disorder associated with substantial deficits in quality of life (QoL). We have previously shown that in this population the Relaxation Response Resiliency Program for NF (3RP-NF) delivered via live videoconferencing is associated with sustained improvement in QoL from baseline through 6-month follow-up over and above an attention placebo control. PURPOSE: To examine between- and within-group changes in QoL domains from baseline to 1-year follow-up and 6-month to 1-year follow-up. METHODS: We enrolled and randomized 63 adults with NF. Of these, 52 completed the 6-month follow-up and 53 completed 1-year follow-up. We assessed QoL with the World Health Organization Quality of Life-Brief. RESULTS: Participation in the 3RP-NF was associated with sustained improvement from baseline to 1 year in physical health QoL (12.68; 95% confidence interval (CI): 1.76 to 23.59; p = 0.024) and social relations QoL (16.81; 95% CI 3.03 to 30.59; p = 0.018) but not psychological and environmental QoL, over and above the control (between group changes). Participants in the 3RP-NF improved from baseline to 1 year in psychological (8.16; 95% CI 1.17 to 15.14; p = 0.023) and social relations QoL (9.93; 95% CI 1.10 to 18.77; p = 0.028; within-group changes). There were no other significant differences between or within groups from baseline/6 months to 1 year. CONCLUSIONS: The live video 3RP-NF shows promise in improving QoL dimensions over the course of 1 year. Results should be replicated in a fully powered randomized controlled trial. CLINICAL TRIAL INFORMATION: ClinicalTrials.gov NCT03406208.

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