Development of patient reported outcome measures assessing tumor pain intensity and tumor pain interference for individuals with neurofibromatosis type 1 and plexiform neurofibromas: qualitative findings
The PAINS-pNF and PII-pNF are promising self-report measures developed using patient engagement to evaluate tumor pain intensity and pain interference in NF1 clinical trials. The second phase of the study to provide reliability, validity, and normative data for individuals with NF1 and pNFs ages 8 years and older is underway.
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 Martin
- Karin S. Walsh (ORCID: https://orcid.org/0000-0001-9637-2164)
- 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)
- Jason Levine (ORCID: https://orcid.org/0000-0001-8193-8188)
Institutions
- Cincinnati Children's Hospital Medical Center (US)
- National Institutes of Health (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)
- Center for Cancer Research (US)
- Children's Hospital & Medical Center (US)
Publication Details
- Journal
- Journal of Patient-Reported Outcomes
- Published
- 2025-04-30
- DOI
- https://doi.org/10.1186/s41687-025-00877-2
- Citations
- 8
- Primary Topic
- Neurofibromatosis and Schwannoma Cases
- Type
- article
- Field-Weighted Citation Impact
- 11.11
Funders
- U.S. Department of Health and Human Services
- National Institutes of Health
- National Cancer Institute