ArticleNeuro-oncology advances2020
Quality of life in patients with neurofibromatosis type 1 and 2 in Canada.
Article in Neuro-oncology advances, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers.
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Who cites it
32 citing papers in PubMed, 48 citations in OpenAlex.
- Durable responses to long-term selumetinib in Chinese pediatric NF1 patients with inoperable plexiform neurofibromas.Frontiers in pharmacology · 2026Trial
- Insights from a Multi-Country Survey: Healthcare Providers' Perspectives on the Management of Adults with Neurofibromatosis Type 1 and Plexiform Neurofibroma.Neurology and therapy · 2026Article
- Determinants of the quality of life of patients with NF2-related schwannomatosis and validation of the Dutch NFTI-QOL questionnaire.Familial cancer · 2026Article
- Development and Initial Validation of the Quality of life Evaluation inmedRxiv : the preprint server for health sciences · 2026Article
- From diagnosis to daily life: A comparative pilot study on healthcare access and challenges for neurofibromatosis type 1 in public systems of Brazil and Portugal.Clinics (Sao Paulo, Brazil) · 2026Article
- Healthcare utilization patterns and costs related to neurofibromatosis 1 in Ontario, Canada.Orphanet journal of rare diseases · 2026Article
- Review
- Improvements in pain interference among geographically diverse adults with neurofibromatosis: Results from a fully powered randomized controlled trial.Neuro-oncology practice · 2025Article
- Quality of life assessment in schwannomatosis - A systematic review.Brain & spine · 2025Article
- Consensus recommendations on management of selumetinib-associated adverse events in pediatric patients with neurofibromatosis type 1 and plexiform neurofibromas.Neuro-oncology practice · 2024Review
- Quality of Life in Children with Neurofibromatosis Type 1: Agreement between Parents and Patients, and the Role of Disease Severity and Visibility.Children (Basel, Switzerland) · 2024Article
- The impact of cutaneous neurofibromas on quality of life and mental health in neurofibromatosis type 1.The Journal of dermatology · 2024Article
- The impact of mental health on health-related quality of life in patients with NF2-related Schwannomatosis.Scientific reports · 2024Article
- Impact of neurofibromatosis type 1 on quality of life using the Skindex-29 questionnaire quality of life in NF1.Orphanet journal of rare diseases · 2024Article
- Mindfulness, coping, and optimism as mechanisms of change in the 3RP-NF intervention.Journal of clinical psychology · 2024Article
- Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: Results from an anonymous online survey.Clinical trials (London, England) · 2024Article
- Long-term distress throughout one's life: health-related quality of life, economic and caregiver burden of patients with neurofibromatosis type 1 in China.Frontiers in public health · 2024Article
- Article
- Employment, occupation, and income in adults with neurofibromatosis 1 in Denmark: a population- and register-based cohort study.Orphanet journal of rare diseases · 2023Article
- Work participation in adults with rare genetic diseases - a scoping review.BMC public health · 2023Article
Corrections and comments
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Authors and funding
6 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThere is scarce data on the quality of life of people with neurofibromatosis type 1 (NF1) and type 2 (NF2) in Canada.
methodsA cross-sectional study of adults with NF1 and NF2 attending a tertiary center. Patients completed generic measures (SF-36, EQ-5D-5L, and PROMIS pain interference) and disease-specific questionnaires (PedsQL NF1 module and the NFTI-QOL for NF2). We compared generic scores between NF1 and NF2 individuals and used regression models to assess factors associated with quality of life.
resultsHundred and eighty-four participants were enrolled. Mean age was 33 years in NF1 and 40 years in NF2. NF1 and NF2 individuals had lower employment rates and lower scores in all domains of the SF-36 compared to the general Canadian population (
conclusionsIndividuals with NF1 and NF2 have low quality of life, and this correlates with pain, anxiety, and depression, which are prevalent in NF1 and NF2. Perceived physical appearance predicts quality of life in NF1. A multidisciplinary approach is necessary for patients with NF1 and NF2, including mental health and pain management.
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