Qualitative aspects of pain in children and adults with neurofibromatosis type 1 and plexiform neurofibromas

Causes, consequences, and communication

Bibliographic Data

ID4227934
AuthorsMelissa Baker (0000-0001-7064-5881, National Cancer Institute, National Institutes of Health, USA), Staci Martins (0000-0002-9342-4173, National Cancer Institute, National Institutes of Health, USA), Nour Al Ghriwati (0000-0001-5065-545X, Frederick National Laboratory for Cancer Research), Paige Little (0009-0001-1888-1585, National Cancer Institute, National Institutes of Health, USA), Kari Struemph (0000-0003-4148-7911, University of Kansas Medical Center), Tia Tyndal (0000-0001-7412-9614, National Cancer Institute, National Institutes of Health, USA), James Tonsgard (University of Chicago Pritzker School of Medicine, USA), James H Tonsgard (0000-0001-6678-6884), Cynthia Mackenzie (0000-0001-6179-9571, University of Chicago Pritzker School of Medicine, USA), Elizabeth K Schorry (0000-0002-8306-3490, Cincinnati Children's Hospital Medical Center), Karin S Walsh (0000-0001-9637-2164, Children's National), Pamela L Wolters (0000-0001-9319-6281, National Cancer Institute, National Institutes of Health, USA)
Year2025
Pages13591053251343023-13591053251343023
Publication date2025-07-13
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueJournal of Health Psychology (JOURNAL)
Journal identifiersISSN: 1359-1053 • E-ISSN: 1461-7277
PublisherSAGE Publications Inc (PUBLISHER)
DOI10.1177/13591053251343023
PMID40652358
OpenAlexW4412371506
LanguageEN
References cited39

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

Chronic pain · Mood · Neurofibromatosis · Pain catastrophizing · Physical therapy · Psychiatry · Psychosocial · Qualitative research · Thematic analysis · Medicine · Nerve Injury and Rehabilitation · Neuroblastoma Research and Treatments · Neurofibromatosis and Schwannoma Cases · Psychology · Clinical Psychology

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