Acceptance and Commitment Therapy for Adolescents and Young Adults With Neurofibromatosis and Chronic Pain

* INCLUSION CRITERIA FOR PARTICIPANT:

Subjects must be between 12 and 21 years of age at the time of the intervention. Because the research on the effectiveness of ACT with children younger than 12 is still emerging, children 11 and younger will be excluded from the present study.

For the clinical diagnosis of NF1 all study subjects must have two or more diagnostic criteria for NF1 listed below (NIH Consensus Conference):

1. Six or more cafe-au-lait spots (greater than or equal to 0.5 cm in prepubertal subjects or greater than or equal to 1.5 cm in postpuberta subjects)
2. Greater than or equal to 2 neurofibromas or 1 plexiform neurofibroma
3. Freckling in the axilla or groin
4. Optic glioma
5. Two or more Lisch nodules
6. A distinctive bony lesion (dysplasia of the sphenoid bone or dysplasia or thinning of long bone cortex)
7. A first-degree relative with NF1

   Response of 3 or higher on a pain item (1 5 scale) from a self-report quality of life measure (Impact of Pediatric Illness Scale) assessing the extent to which pain has interfered with the patient s daily functioning over the past month.

   Ability of subject or Legally Authorized Representative (LAR) to understand and the willingness to sign a written informed consent document.

   Subjects may be participating in other medical interventions for the treatment of their disease, or standard care techniques for pain management.

   No anticipated major changes in their pain regimen or enrollment on a new treatment study in the near future.

   Subjects must be able to read and comprehend the English language.

   EXCLUSION CRITERIA FOR PARTICIPANT:

   In the opinion of the PI or an AI, the subject has significant cognitive or emotional difficulties that would prevent them from being able to understand and/or participate fully in the intervention or the measures.

   Subjects who are participating in any other treatment studies, either medical or behavioral, for pain management.

   Subjects who are scheduled to begin a new drug protocol for the treatment of their NF1 during the time of their enrollment on the current study.

   Inability to travel to the NIH, for example, due to physical limitations, for the scheduled workshop and evaluations.

   No groups in regards to gender, race, or ethnicity are being excluded from participation in the trial.

   INCLUSION CRITERIA FOR PARENTS:

   Parents must have a child with NF1 who is participating in this protocol as a patient.

   Ability to read and comprehend the English language.

   Ability to understand and the willingness to sign a written informed consent document.

   If a minor patient meets all eligibility criteria but his or her parent does not (i.e., in the case where a parent does not speak English), the patient will not be allowed to participate.