ArticleCureus2026
Translation and Cultural Adaptation of the PedsQL Neurofibromatosis Module, Version 3.0, Into Brazilian Portuguese.
Article in Cureus, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper, 1 of them a synthesis that pooled it.
What it found
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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
1 citing paper in PubMed, 1 synthesis or guideline pooled it.
- Self-reported perspective in rare genetic diseases: a systematic review of patient-reported outcome measures classified using the international classification of functioning, disability and health framework.Journal of patient-reported outcomes · 2026Pooled it
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionNeurofibromatosis type 1 (NF1) is a prevalent genetic disorder for which no pharmacological treatment is currently available. It affects approximately 1 in 3,000 live births, with an estimated 80,000 individuals living with the condition in Brazil. Benign tumors, such as plexiform neurofibromas, can substantially impair both physical function and appearance. Additionally, patients can present behavioral and cognitive challenges, including language impairments, learning disabilities, hyperactivity, autism spectrum symptoms, and depression. The quality of life of affected individuals is largely influenced by clinical, psychological, and social factors. Quality-of-life assessment cannot rely solely on clinical observation; it requires direct input from patients and their families. Validated instruments, such as the PedsQL NF1 Module, are essential to objectively capture these perspectives.
objectiveTo translate and culturally adapt the
methodsThe study followed four phases: (1) translation into Portuguese; (2) back-translation into English; (3) expert review by physicians and nurses from multiple regions of Brazil; and (4) pilot testing with NF1 patients. Expert evaluation included the Content Validity Index (CVI) and Kappa coefficient to assess agreement and reliability.
resultsThe PedsQL NF1 Module was successfully translated and culturally adapted for Brazilian patients aged 5-25 years. The results showed satisfactory CVI (0.75) and Kappa (0.6) values. Minor adjustments were made to the caregiver version to improve comprehension, e.g., replacing
conclusionsThe translation, cultural adaptation, and pre-testing of the PedsQL NF1 Module were successfully completed. The instrument demonstrated acceptable content validity and inter-rater agreement, supporting its applicability for Brazilian patients and caregivers.
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Registered trials
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