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.

ABSTRACT:

Background

Pain is a common symptom in individuals with neurofibromatosis type 1 (NF1) that often is associated with plexiform neurofibroma (pNF) tumors. To date, no patient-reported outcome measures have been validated specifically to assess pNF-related pain intensity or pain interference in this population. Such measures are sorely needed since pain is being considered as an outcome in clinical trials targeting reduction of pNF. The study aims were to: (1) obtain qualitative information from individuals with NF1 and pNFs about their pain and its measurement and (2) modify existing scales to assess pNF-related pain intensity and pain interference for NF1 clinical trials.

Methods

For this multi-site, qualitative study, 56 individuals (26 children, 6-16 years; 30 adults, 18-6

SUBMITTER: Al Ghriwati N 

PROVIDER: S-EPMC12044096 | biostudies-literature | 2025 Apr

REPOSITORIES: biostudies-literature