SynthesisJournal of neuro-oncology2015
Quality of life among children and adolescents with neurofibromatosis 1: a systematic review of the literature.
Synthesis in Journal of neuro-oncology, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 1 of them a synthesis 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, 1 synthesis or guideline pooled it, 69 citations in OpenAlex.
- Evaluation of QoL in neurofibromatosis patients: a systematic review and meta-analysis study.BMC neurology · 2019Pooled it
- Improvement in resiliency factors among adolescents with neurofibromatosis who participate in a virtual mind-body group program.Journal of neuro-oncology · 2020Trial
- The Hungarian cross-cultural adaptation of the MMQL-AF for measuring quality of life in adolescents with cancer.Scientific reports · 2025Article
- "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
- 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
- Quality of life in individuals with neurofibromatosis type 1 associated cutaneous neurofibromas: validation of the Dutch cNF-Skindex.Journal of patient-reported outcomes · 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
- Understanding the impact of tuberous sclerosis complex: development and validation of the TSC-PROM.BMC medicine · 2023Article
- Neuropsychiatric Manifestations, Reduced Self-Esteem and Poor Quality of Life in Children and Adolescents with Neurofibromatosis Type 1 (NF1): The Impact of Symptom Visibility and Bullying Behavior.Children (Basel, Switzerland) · 2023Article
- ERN GENTURIS tumour surveillance guidelines for individuals with neurofibromatosis type 1.EClinicalMedicine · 2023Review
- Neurofibromatosis Type 1 (NF1): Addressing the Transition from Pediatric to Adult Care.Pediatric health, medicine and therapeutics · 2023Review
- Quality of life in patients with neurofibromatosis type 1: a nationwide database study in Japan from 2015 to 2019.Environmental health and preventive medicine · 2023Article
- Benign Hand Tumors (Part II): Soft Tissue Tumors.Hand (New York, N.Y.) · 2022Article
- A cross-sectional study of gender differences in quality of life domains in patients with neurofibromatosis type 1.Orphanet journal of rare diseases · 2022Article
- Executive functions and quality of life in children with neurofibromatosis type 1.Orphanet journal of rare diseases · 2021Article
- Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials.Neurology · 2021Article
- Measuring the Effect of Cutaneous Neurofibromas on Quality of Life in Neurofibromatosis Type 1.Neurology · 2021Article
- Neurofibromatosis 1 French national guidelines based on an extensive literature review since 1966.Orphanet journal of rare diseases · 2020Article
- Pain, skin sensations symptoms, and cognitive functioning predictors of health-related quality of life in pediatric patients with Neurofibromatosis Type 1.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2019Article
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 research is to identify, within a systematic review, aspects of quality of life (QoL) that are adversely affected in children and adolescents with neurofibromatosis (NF), and to report predictors of quality of life in this population. Published reports of original research were included if they described QoL in children and/or adolescents with NF, and met methodological quality according to a list of predefined criteria. Seven studies conducted between 2006 and 2013 met inclusion criteria. All seven studies examined patients with NF1 and reported that these patients have lower general QoL compared to population norms. Parents' proxy ratings of QoL were generally lower than children's self-report ratings. By parent proxy, familial NF1 was a strong protective factor for QoL, while the opposite was found by child report. By parent proxy, male sex was significantly associated with lower scores on the parental time impact of QoL. Skin-related QoL was only slightly altered in this population, vision-specific QoL was impacted only in patients with vision loss. The majority of findings regarding predictors of QoL in children with NF1 were weak, due to a lack of studies, heterogeneity of samples, and heterogeneity of measurements/predictors assessed. Future studies should examine more comprehensively the psychosocial factors affecting the NF population, especially in young patients with NF2 and schwannomatosis, who have been neglected in prior research. The use of consistent QoL measures is preferred to allow better comparison among studies and conditions. Interventions, including comprehensive mind-body treatments, are warranted to address impaired QoL in children and adolescents with NF1.
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.