Qualitative aspects of pain in children and adults with neurofibromatosis type 1 and plexiform neurofibromas: Causes, consequences, and communication

Document Type

Journal Article

Publication Date

7-13-2025

Journal

Journal of health psychology

DOI

10.1177/13591053251343023

Keywords

communication; neurofibromatosis; pain; plexiform neurofibroma; qualitative

Abstract

Neurofibromatosis type 1 (NF1) often manifests in painful plexiform neurofibroma (pNF). While numerous quantitative studies have documented pNF-related pain, the current qualitative study sought to investigate individual aspects of the pNF-related pain experience. In this multi-site study, 56 individuals with NF1, aged 6-86 years, participated in a focus group or interview regarding their NF1 and pNF-related pain. Thematic analysis of transcripts revealed themes of pain descriptions, pain triggers, psychosocial impacts of pain, pain relief behaviors, and parent-child communication about the child's pain. Findings indicated that individuals vary widely in their descriptions of pNF-related pain with respect to pain onset, duration, and intensity. Additional findings detailed how pain negatively impacts mood and barriers to parent-child pain communication. Given the widespread prevalence of pNF-related pain, a combined pharmacological and psychological approach may offer the most effective means of ameliorating pain and helping individuals and families communicate about and cope with their symptoms.

Department

Psychiatry and Behavioral Sciences

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