Academic Journal
A National Modified Delphi Consensus on the Referral and Management of NF1 Plexiform Neurofibroma.
| Τίτλος: | A National Modified Delphi Consensus on the Referral and Management of NF1 Plexiform Neurofibroma. |
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| Συγγραφείς: | Lafay-Cousin L; Alberta Children's Hospital, Calgary, AB, Canada.; Cumming School of Medicine, University of Calgary, Calgary, AB, Canada., Perreault S; Division of Neurology, CHU Sainte-Justine, Montreal, Quebec, Canada., Singh D; Triducive Partners Limited, St Albans, Hertfordshire, UK., Larner K; Triducive Partners Limited, St Albans, Hertfordshire, UK., Ramaswamy V; Division of Haematology/Oncology, Hospital for Sick Children and University of Toronto, Toronto, ON, Canada. |
| Πηγή: | The Canadian journal of neurological sciences. Le journal canadien des sciences neurologiques [Can J Neurol Sci] 2026 Sep; Vol. 53 (5), pp. 708-716. Date of Electronic Publication: 2025 Sep 02. |
| Τύπος έκδοσης: | Journal Article |
| Γλώσσα: | English |
| Στοιχεία περιοδικού: | Publisher: published by Cambridge University Press for the Canadian Neurological Sciences Federation Country of Publication: England NLM ID: 0415227 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 0317-1671 (Print) Linking ISSN: 03171671 NLM ISO Abbreviation: Can J Neurol Sci Subsets: MEDLINE |
| Imprint Name(s): | Publication: <1999>- : Cambridge : published by Cambridge University Press for the Canadian Neurological Sciences Federation Original Publication: Calgary : Canadian Journal of Neurological Sciences |
| Ιατρικοί όροι (MeSH): | Neurofibroma, Plexiform*/therapy , Neurofibroma, Plexiform*/diagnosis , Neurofibroma, Plexiform*/epidemiology , Neurofibromatosis 1*/therapy , Neurofibromatosis 1*/diagnosis , Neurofibromatosis 1*/epidemiology , Referral and Consultation* , Delphi Technique* , Consensus* , Disease Management*, Humans ; Canada ; Surveys and Questionnaires |
| Περίληψη: | Background and Objectives: Neurofibromatosis type 1 (NF1) is a genetic disorder. Up to 50% of NF1 patients develop plexiform neurofibromas (PN). Despite revisions in diagnostic standards, there remains a lack of consensus on referral, treatment, monitoring and transition processes for NF1-PN. The study aimed to establish a Canada-wide consensus on the best practice for referral and management of patients with NF1-PN to help generate guidance where evidence on the long-term use of MEK inhibitors is lacking. Methods: The study used a modified Delphi method. The steering committee (SC) identified 4 topics of focus and developed 44 consensus statements. Following ratification, 43 statements were developed into an online survey sent to 113 healthcare practitioners (HCPs) involved in NF1-PN management across Canada. Respondents used a 4-point Likert scale to indicate agreement with each statement. The threshold for consensus agreement was 75%. Results: A total of 56 responses were received, predominantly from Ontario. Most respondents were neuro-oncologists (34%) and had over 11 years of experience (57%). Consensus was reached on 41 of 43 statements (95%), enabling the SC to develop recommendations for NF1-PN patient care and a treatment algorithm outlining key timings for treatment and management. Conclusions: To our knowledge, this is the first national Delphi consensus on NF1-PN. Strong agreement was seen from HCPs on critical timings in NF1-PN treatment and management. The proposed recommendations and treatment algorithm provide a framework to enhance patient care and support ongoing research into optimizing care for NF1-PN patients, not just in Canada but globally. |
| Contributed Indexing: | Keywords: Consensus; MEK; neurofibromatosis; plexiform |
| Entry Date(s): | Date Created: 20250902 Date Completed: 20260911 Latest Revision: 20260911 |
| Update Code: | 20260911 |
| DOI: | 10.1017/cjn.2025.10409 |
| PMID: | 40891257 |
| Βάση Δεδομένων: | MEDLINE |
| ISSN: | 0317-1671 |
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| DOI: | 10.1017/cjn.2025.10409 |