title: Acceptance and commitment therapy in youth with neurofibromatosis type 1 (NF1) and chronic pain and their parents: A pilot study of feasibility and preliminary efficacy.
abstract: Neurofibromatosis type 1 (NF1) is an autosomal dominant genetic disorder affecting about 1 in 3,500 individuals. Chronic pain is commonly reported among individuals with NF1 and plexiform neurofibroma tumors (PNs). Acceptance and Commitment Therapy (ACT), an empirically supported method for addressing chronic pain, helps individuals re-focus on valued relationships and activities. This pilot study investigated the feasibility and preliminary efficacy of a brief ACT workshop in the NF1 population. Eligible participants included adolescents and young adults (AYA; 12-21 years) with NF1 and chronic pain that interfered with daily functioning and their parents. Patients and parents completed baseline measures of pain interference, pain intensity, functional disability, pain acceptance, depression, and anxiety. Then, AYA and parents participated separately in a 2-day small-group ACT workshop. A telephone booster session occurred 1 month post-intervention. Three-month post-treatment measures were completed by mail. Ten adolescents (4 males; M age = 16.9 years) and seven parents provided baseline and 3-month data. Mean satisfaction with the study was moderate to high (3.9 for patients and 4.6 for parents on a 1-5 scales). Patients and parents reported significant declines in patients' pain interference at 3 months post-treatment. Patient-reported pain intensity significantly declined from baseline to 3 months. Parents reported marginally greater acceptance of their child's pain. No changes emerged in functional ability or mood. Preliminary findings suggest that a brief ACT group intervention is feasible and may help AYA with NF1 and PNs cope with their chronic pain, although larger randomized studies are needed to confirm treatment efficacy. © 2016 Wiley Periodicals, Inc.
authors.affiliation: Pediatric Oncology Branch, National Cancer Institute, Montgomery County, Bethesda, Maryland.
authors.forename: Staci
authors.initials: S
authors.lastname: Martin
authors.affiliation: Pediatric Oncology Branch, National Cancer Institute, Montgomery County, Bethesda, Maryland.
authors.forename: Pamela L
authors.initials: PL
authors.lastname: Wolters
authors.affiliation: Clinical Research Directorate/CMRP, Leidos Biomedical Research, Inc., National Laboratory for Cancer Research, Frederick County, Frederick, Maryland.
authors.forename: Mary Anne
authors.initials: MA
authors.lastname: Toledo-Tamula
authors.affiliation: Pediatric Oncology Branch, National Cancer Institute, Montgomery County, Bethesda, Maryland.|Ettenhofer Laboratory for Neurocognitive Research, Uniformed Services University of the Health Sciences, Montgomery County, Bethesda, Maryland.
authors.forename: Shawn Nelson
authors.initials: SN
authors.lastname: Schmitt
authors.affiliation: Pediatric Oncology Branch, National Cancer Institute, Montgomery County, Bethesda, Maryland.
authors.forename: Andrea
authors.initials: A
authors.lastname: Baldwin
authors.affiliation: Pediatric Oncology Branch, National Cancer Institute, Montgomery County, Bethesda, Maryland.|University at Albany, State University of New York, Albany County, Albany, New York.
authors.forename: Amy
authors.initials: A
authors.lastname: Starosta
authors.affiliation: Pediatric Oncology Branch, National Cancer Institute, Montgomery County, Bethesda, Maryland.
authors.forename: Andrea
authors.initials: A
authors.lastname: Gillespie
authors.affiliation: Pediatric Oncology Branch, National Cancer Institute, Montgomery County, Bethesda, Maryland.
authors.forename: Brigitte
authors.initials: B
authors.lastname: Widemann
mesh_terms: D064869:Acceptance and Commitment Therapy / Q000379:methods; D000293:Adolescent; D000328:Adult; D002648:Child; D059350:Chronic Pain / Q000175:diagnosis / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D055118:Medication Adherence; D009456:Neurofibromatosis 1 / Q000628:therapy*; D010147:Pain Measurement; D010290:Parents; D010865:Pilot Projects; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D055815:Young Adult
keywords: Neurofibromatosis 1; acceptance; adolescents and young adults; mindfulness; parents