Resiliency outcomes after participation in an asynchronous web-based platform for adults with neurofibromatosis: The NF-Web study

PLoS One. 2023 Dec 21;18(12):e0295546. doi: 10.1371/journal.pone.0295546. eCollection 2023.

Abstract

The purpose of this study was to analyze secondary resiliency and user experience outcomes from a novel, 8-week website-based mind-body intervention (NF-Web) for adults (18+) with neurofibromatosis (NF1, NF2, and schwannomatosis), a genetic, neurocutaneous disorder characterized by nerve sheath tumors of the central and peripheral nervous system. The study design was a secondary data analysis of a single-arm, early feasibility pilot study (September 2020-May 2021) for adults with NF (N = 28). Across participants, the mean age was 46 (SD = 13.67) and included 22 females and 6 males. Participants completed baseline and posttest assessments (t-tests), as well as exit interviews (exploratory rapid data analysis). Results demonstrated that participation was associated with pre-to-post improvements in gratitude, coping, and mindfulness (p < .05). Exit interviews indicated participant enjoyment and that many would recommend NF-Web to a friend. Participants found the website easy to navigate and enjoyed NF-Web's video format. Many found transcripts useful if they had hearing differences or if English was their second language. NF-Web demonstrated initial signals of improvement in resiliency outcomes and positive user experience. Future pilot RCTs will explore these changes by NF type.

MeSH terms

  • Adult
  • Female
  • Humans
  • Internet
  • Male
  • Middle Aged
  • Neurilemmoma*
  • Neurofibromatoses* / therapy
  • Neurofibromatosis 1*
  • Neurofibromatosis 2*
  • Pilot Projects
  • Resilience, Psychological*

Grants and funding

Children's tumor foundation Texas NF Foundation NF Northeast NF Midwest