Qualitative aspects of pain in children and adults with neurofibromatosis type 1 and plexiform neurofibromas: Causes, consequences, and communication
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.
Authors
- James H. Tonsgard (ORCID: https://orcid.org/0000-0001-6678-6884)
- Cynthia MacKenzie
- Kari Struemph (ORCID: https://orcid.org/0000-0003-4148-7911)
- Staci C. Martin (ORCID: https://orcid.org/0000-0002-9342-4173)
- Karin S. Walsh (ORCID: https://orcid.org/0000-0001-9637-2164)
- Tia Tyndal (ORCID: https://orcid.org/0000-0001-7412-9614)
- Nour Al Ghriwati (ORCID: https://orcid.org/0000-0001-5065-545X)
- Melissa Baker (ORCID: https://orcid.org/0000-0001-7064-5881)
- Elizabeth K. Schorry (ORCID: https://orcid.org/0000-0002-8306-3490)
- Pamela L. Wolters (ORCID: https://orcid.org/0000-0001-9319-6281)
- Paige Little (ORCID: https://orcid.org/0009-0001-1888-1585)
Institutions
- Cincinnati Children's Hospital Medical Center (US)
- National Institutes of Health (US)
- Children's National (US)
- George Washington University (US)
- Nova Southeastern University (US)
- University of Chicago (US)
- University of Kansas Medical Center (US)
- Frederick National Laboratory for Cancer Research (US)
- National Cancer Institute (US)
Publication Details
- Journal
- Journal of Health Psychology
- Published
- 2025-07-13
- DOI
- https://doi.org/10.1177/13591053251343023
- Primary Topic
- Neurofibromatosis and Schwannoma Cases
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- National Institutes of Health
- School of Medicine, Johns Hopkins University
- Neurofibromatosis Therapeutic Acceleration Program