ArticleNeuro-oncology practice2026
Patient and caregiver experiences with selumetinib for the treatment of pediatric patients with neurofibromatosis type 1 and plexiform neurofibromas.
Article in Neuro-oncology practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: Plexiform neurofibromas (PN) affect 20%-50% of patients with neurofibromatosis type 1 (NF1) and can lead to pain, disfigurement, motor dysfunction, compression of vital structures, and risk of malignant degeneration. Selumetinib was the first pharmacotherapy approved for children aged ≥2 years with symptomatic, inoperable PN in the United States and other countries. This qualitative study was conducted to better understand the drivers for initiating selumetinib and the impact of treatment on quality of life (QoL) from the perspective of pediatric patients with NF1-PN and their caregivers. Methods: The study included pediatric patients in the United States (aged 9-18 years) who had been prescribed selumetinib (≥6 months), and their caregivers. Interviews were conducted, and thematic analyses were performed to identify key concepts. A saturation approach established the point at which no new key concepts were being identified with successive interviews. Results: Prior to initiating selumetinib, children ( Conclusions: Overall, patients and caregivers reported improvements in pain and QoL after selumetinib initiation. The qualitative, real-world nature of this study provides insights into patient and caregiver perspectives, and the impact of selumetinib on the patient journey.
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