ArticleJournal of neurological surgery. Part B, Skull base2012
The NFTI-QOL: A Disease-Specific Quality of Life Questionnaire for Neurofibromatosis 2.
Article in Journal of neurological surgery. Part B, Skull base, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 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
27 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Evaluation of QoL in neurofibromatosis patients: a systematic review and meta-analysis study.BMC neurology · 2019Pooled it
- Disease-specific health related quality of life patient reported outcome measures in Genodermatoses: a systematic review and critical evaluation.Orphanet journal of rare diseases · 2017Pooled it
- Management strategies for vestibular schwannomas in patients with NF2-related schwannomatosis: a systematic review.European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery · 2026Review
- Development and Initial Validation of the Quality of life Evaluation inmedRxiv : the preprint server for health sciences · 2026Article
- Determinants of the quality of life of patients with NF2-related schwannomatosis and validation of the Dutch NFTI-QOL questionnaire.Familial cancer · 2026Article
- Study Protocol: Psychometric Testing of the German Vestibular Schwannoma Quality of Life Index-A Multicenter Study on Quality of Life and Patient-Centered Care in Vestibular Schwannoma.Audiology research · 2026Article
- [BMJ open · 2026Article
- Genetic Alterations in Patients withCancers · 2025Article
- Clinical severity grading of NF2-related schwannomatosis.Orphanet journal of rare diseases · 2025Article
- Quality of life assessment in schwannomatosis - A systematic review.Brain & spine · 2025Article
- Expanding therapeutic options for people with NF2-related schwannomatosis: Encouraging results with brigatinib.Neuro-oncology · 2024Article
- The impact of mental health on health-related quality of life in patients with NF2-related Schwannomatosis.Scientific reports · 2024Article
- Proton Radiotherapy for Vestibular Schwannomas in Patients with NF2-Related Schwannomatosis: A Case Series.Current oncology (Toronto, Ont.) · 2023Article
- Reliability of functional outcome measures in adults with neurofibromatosis 2.SAGE open medicine · 2022Article
- Patient Report of Hearing in Neurofibromatosis Type 2: Recommendations for Clinical Trials.Neurology · 2021Article
- Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials.Neurology · 2021Article
- Quality of life in patients with neurofibromatosis type 1 and 2 in Canada.Neuro-oncology advances · 2020Article
- Auditory Brainstem Implantation for Adults With Neurofibromatosis 2 or Severe Inner Ear Abnormalities: A Health Technology Assessment.Ontario health technology assessment series · 2020Article
- Association between patient-reported outcomes and objective disease indices in people with NF2.Neurology. Clinical practice · 2019Article
- Genetic Severity Score predicts clinical phenotype in NF2.Journal of medical genetics · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The objective of this study was to develop a reliable, validated disease-specific score measuring quality of life (QOL) in clinical practice and treatment trials in Neurofibromatosis 2 (NF2) individuals. In NF2 patients, qualitative interviews (n = 15) and a focus group session (n = 30) generated items for a pilot questionnaire. This was tested and refined (n = 20). The final version (NFTI-QOL) was validated (n = 50) with two generic QOL questionnaires (SF-36 and EuroQOL). The NFTI-QOL was also administered to patients with solitary vestibular schwannoma (SVS) (n = 30) and normal controls (n = 30). The participants were NF2 patients, SVS patients, and normal controls. NFTI-QOL score, SF-36 score, and EuroQOL score were the main outcome measures. Mean NFTI-QOL score was 9.4 (range: 0 to 20, maximum possible score = 24). The NFTI-QOL score correlated strongly with EuroQOL (r = 0.71, p < 0.001) and SF-36 (r = 0.81, p < 0.001). NF2 individuals were significantly worse than the SVS patients, who in turn were worse than the controls on the NIFTI-QOL. The NFTI-QOL showed good internal reliability (Cronbach's α = 0.87). We developed an eight-item disease-specific QOL score for NF2 patients, validated against SF-36 and EuroQOL. It correlated strongly with clinician-rated disease severity in NF2, with better correlation than the SF-36 in this regard.
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.