SynthesisJournal of neuro-oncology2013
Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature.
Synthesis in Journal of neuro-oncology, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 51 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
51 citing papers in PubMed, 2 syntheses or guidelines pooled it, 97 citations in OpenAlex.
- Evaluation of QoL in neurofibromatosis patients: a systematic review and meta-analysis study.BMC neurology · 2019Pooled it
- Quality of life among children and adolescents with neurofibromatosis 1: a systematic review of the literature.Journal of neuro-oncology · 2015Pooled it
- Social support moderates quality of life outcomes during a mind-body intervention among adults with neurofibromatosis.Journal of neuro-oncology · 2025Trial
- The impact of a virtual mind-body program on resilience factors among international English-speaking adults with neurofibromatoses: secondary analysis of a randomized clinical trial.Journal of neuro-oncology · 2023Trial
- Effect of Mind-Body Skills Training on Quality of Life for Geographically Diverse Adults With Neurofibromatosis: A Fully Remote Randomized Clinical Trial.JAMA network open · 2023Trial
- Baseline characteristics of adults with neurofibromatosis enrolled on a psychosocial randomized controlled trial.Journal of neuro-oncology · 2022Trial
- Cultivating resiliency in patients with neurofibromatosis 2 who are deafened or have severe hearing loss: a live‑video randomized control trial.Journal of neuro-oncology · 2019Trial
- The impact of a mind-body program on multiple dimensions of resiliency among geographically diverse patients with neurofibromatosis.Journal of neuro-oncology · 2018Trial
- Clinical and Imaging Phenotype of Schwannomatosis in Children, Adolescents and Young Adults.Cancers · 2026Article
- Development of an adult neurofibromatosis clinic in the comprehensive cancer center setting and descriptive analysis of the first 100 patients with neurofibromatosis type 1.Orphanet journal of rare diseases · 2026Article
- "It's not any one thing, it's always all of them, all at the same time": quality of life in NF2-related schwannomatosis from patient and clinician perspectives.Familial cancer · 2025Article
- The association of body image with quality of life, psychological assistance and social support in neurofibromatosis type 1 patients: a cross-sectional study.Orphanet journal of rare diseases · 2025Article
- Quality of life assessment in schwannomatosis - A systematic review.Brain & spine · 2025Article
- 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
- Minimal clinically important difference in the World Health Organization Quality of Life Brief (WHOQOL-BREF) for adults with neurofibromatosis.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Diverse learners: learning disabilities and quality of life following mind-body and health education interventions for adults with neurofibromatosis.Journal of neuro-oncology · 2024Article
- Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: Results from an anonymous online survey.Clinical trials (London, England) · 2024Article
- Quality of life and neurological symptoms in patients with neurofibromatosis type 2: a national database study in Japan.Environmental health and preventive medicine · 2024Article
- Parent perspectives on disclosing a pediatric neurofibromatosis type 1 diagnosis.Journal of genetic counseling · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The aim of this study was to review the literature on quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis, and to identify the specific aspects of quality of life that were studied and reported in this population. We also set out to report predictors of quality of life. Published research reports were included if they described quality of life in this population and met methodological quality according to a list of predefined criteria. Eight studies (7 in NF1, 1 in NF2, 0 in schwannomatosis), conducted between 2001 and 2013, met inclusion criteria. The methodological quality of the eight studies was mostly high according to ratings by predefined criteria. Most studies reported that patients with NF experience decreased quality of life when compared to the general population. Visibility and disease severity were strong predictors of skin-specific quality of life in NF1 patients. However, the majority of findings regarding predictors of quality of life were weak or inconclusive. Given the decreased quality of life in NF patients, it is important to examine more comprehensively the psychosocial factors in this population, especially in patients with NF2 and schwannomatosis. Mind body interventions that address these domains may provide comprehensive and efficacious long term treatment.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.