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

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.