ArticleNeurology and therapy2026
Insights from a Multi-Country Survey: Healthcare Providers' Perspectives on the Management of Adults with Neurofibromatosis Type 1 and Plexiform Neurofibroma.
Article in Neurology and therapy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionNeurofibromatosis type 1 (NF1) is a genetic, multi-system disorder characterized by a range of manifestations. Approximately 50% of patients with NF1 develop peripheral nerve sheath tumors [plexiform neurofibroma (PN)], which can cause substantial morbidity and often progress into adulthood. Historically, NF1-PN research has focused on pediatric patients; however, less is known in adult patients, in whom treatment options are also limited. This study aimed to provide insights into the management and treatment challenges in adults with NF1-PN from the perspective of healthcare providers (HCPs).
methodsTwo separate studies, one in the US and one across multiple countries (Canada, China, France, Germany, Japan, Italy, Spain, and the UK), were conducted with a mixed-methods, double-blinded design among HCPs who treat adults with NF1-PN. Qualitative interview data were collected to explore survey responses (US) or to inform quantitative study design (multi-country); quantitative data were collected through online surveys.
resultsOverall, 4 and 16 HCPs participated in the qualitative portion of the US and multi-country studies, whereas 41 and 124 HCPs participated in the quantitative portion, respectively. Physical examinations and radiologic imaging were used for diagnosis of NF1-PN across both studies, but family history was more frequent in the multi-country study (81-83% multi-country; 68-75% US). HCPs reported managing multiple high-burden manifestations, including brainstem or optic gliomas, hearing issues, neurocognitive or visual impairment, and neuropathic pain, resulting in patients missing an average of 6-8 days from school or work per month. Approximately 17-25% of patients drop out of care when transitioning from pediatric to adult care with lack of support/processes/guidelines noted as key challenges.
conclusionThese results highlight unmet clinical needs in treatment of adults with NF1-PN worldwide; specifically, limited treatment options for PN growth and symptoms. HCPs identified need for better educational resources for patients and improved transition-of-care processes/resources.
Indexed as
Identifiers
42848139What 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.