ArticleNeurology and therapy2026
Clinical and Humanistic Burden Among Adults with Neurofibromatosis Type 1 and Symptomatic Plexiform Neurofibroma in the United States.
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
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionNeurofibromatosis type 1 with plexiform neurofibromas (NF1-PN) can cause substantial clinical morbidity, yet the overall humanistic burden in adults remains poorly characterized. This study assessed health-related quality of life (HRQoL), in addition to clinical characteristics, among adults with symptomatic NF1-PN.
methodsA cross-sectional survey was conducted among adults with NF1-PN in the USA. The survey included the following patient-reported outcome (PRO) measures: PAin INtensity Scale for Plexiform Neurofibromas (PAINS-pNF), Pain Interference Index (PII-pNF), PN quality of life measure (PlexiQoL), Patient-Reported Outcomes Measurement Information System (PROMIS), Pediatric Quality of Life Inventory (PedsQL), Work Productivity and Activity Impairment (WPAI-CIQ), and EQ-5D-5L.
resultsAmong 120 participants (mean age 41.8 years, 46.7% female), 80.0% reported experiencing pain and fatigue. Over half of patients reported moderate-to-severe chronic (51.7%) and spike (83.3%) tumor pain (PAINS-pNF: mean chronic pain = 3.6 ± 2.5; mean spike pain = 6.3 ± 3.2), with considerable interference with daily activities (PII-pNF: mean = 3.1 ± 1.6). PROMIS scores indicated worse outcomes than the general population for physical function (38.4 ± 7.7), depression (59.0 ± 9.2), anxiety (60.1 ± 9.5), and fatigue (59.0 ± 10.2). Only 12.5% were employed, with 50.8% reporting disability. Among employed individuals, work productivity loss averaged 39.3% ± 30.7. Overall daily activity impact was high (55.5% ± 22.5). The mean EQ-5D-5L utility score was 0.38 ± 0.39, with 69.2% reporting moderate-to-extreme pain/discomfort and 57.5% reporting moderate-to-extreme anxiety/depression.
conclusionAdults with symptomatic NF1-PN experience substantial disease burden across multiple domains, including high prevalence of pain, impaired physical and psychological functioning, reduced work productivity, and low health utility scores. These results highlight the need for integrated pharmacological, psychological, and rehabilitation interventions to support overall patient well-being.
Indexed as
Identifiers
What Socratic 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 Socratic graph.