Acceptance and commitment therapy for adolescents and adults with neurofibromatosis type 1, plexiform neurofibromas, and chronic pain: Results of a randomized controlled trial

Abstract

Neurofibromatosis type 1 (NF1) is a genetic syndrome associated with multiple complications that cause chronic pain, including plexiform neurofibroma (PN) tumors. However, no randomized studies have examined non-pharmacological interventions for pain specifically targeting individuals with NF1 and PNs. In the current randomized controlled trial, an Acceptance and Commitment Therapy intervention was conducted with older adolescents and adults ages 16–59 years with NF1, PNs, and chronic pain. We hypothesized that pain interference would decrease from pre-to post-intervention compared to a wait-list control group. We also examined potential mediators, including pain acceptance and inflexibility. The intervention consisted of two 2-h in-person sessions followed by 8 weeks of online training including weekly email assignments and biweekly video chats. Outcome measures evaluating pain interference, pain intensity, pain anxiety, and depression and process measures evaluating pain acceptance and pain inflexibility were administered at baseline and after the 8-week intervention. Sixty-two participants (M age = 30.7 ± 11.5 years, 61.3% female) completed the intervention. Results indicated that the ACT intervention significantly reduced how much pain interfered with daily functioning. Improvements in pain acceptance and, separately, pain inflexibility, mediated the treatment benefit for individuals in the ACT group. No improvements in pain intensity, pain anxiety, or depression were noted following the intervention. Durable treatment benefits were seen at 6 months albeit only among those who improved more during the 8-week intervention. While the immediate post-intervention effects were seen after 4 h of in-person training and limited online sessions, more support is likely needed to maintain these effects long-term. Results indicate that remote ACT interventions have promise and could make this treatment accessible to more patients with NF1, PNs and chronic pain.