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A National Modified Delphi Consensus on the Referral and Management of NF1 Plexiform Neurofibroma.

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Τίτλος: A National Modified Delphi Consensus on the Referral and Management of NF1 Plexiform Neurofibroma.
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
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  Data: A National Modified Delphi Consensus on the Referral and Management of NF1 Plexiform Neurofibroma.
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  Data: &lt;searchLink fieldCode=&quot;AU&quot; term=&quot;%22Lafay-Cousin+L%22&quot;&gt;Lafay-Cousin L&lt;/searchLink&gt;; Alberta Children&#39;s Hospital, Calgary, AB, Canada.; Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.&lt;br /&gt;&lt;searchLink fieldCode=&quot;AU&quot; term=&quot;%22Perreault+S%22&quot;&gt;Perreault S&lt;/searchLink&gt;; Division of Neurology, CHU Sainte-Justine, Montreal, Quebec, Canada.&lt;br /&gt;&lt;searchLink fieldCode=&quot;AU&quot; term=&quot;%22Singh+D%22&quot;&gt;Singh D&lt;/searchLink&gt;; Triducive Partners Limited, St Albans, Hertfordshire, UK.&lt;br /&gt;&lt;searchLink fieldCode=&quot;AU&quot; term=&quot;%22Larner+K%22&quot;&gt;Larner K&lt;/searchLink&gt;; Triducive Partners Limited, St Albans, Hertfordshire, UK.&lt;br /&gt;&lt;searchLink fieldCode=&quot;AU&quot; term=&quot;%22Ramaswamy+V%22&quot;&gt;Ramaswamy V&lt;/searchLink&gt;; Division of Haematology/Oncology, Hospital for Sick Children and University of Toronto, Toronto, ON, Canada.
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  Data: &lt;searchLink fieldCode=&quot;JN&quot; term=&quot;%220415227%22&quot;&gt;The Canadian journal of neurological sciences. Le journal canadien des sciences neurologiques&lt;/searchLink&gt; [Can J Neurol Sci] 2026 Sep; Vol. 53 (5), pp. 708-716. &lt;i&gt;Date of Electronic Publication: &lt;/i&gt;2025 Sep 02.
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  Data: &lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibroma%2C+Plexiform%22&quot;&gt;Neurofibroma, Plexiform*&lt;/searchLink&gt;/&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibroma%2C+Plexiform+therapy%22&quot;&gt;therapy&lt;/searchLink&gt; &lt;br /&gt;&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibroma%2C+Plexiform%22&quot;&gt;Neurofibroma, Plexiform*&lt;/searchLink&gt;/&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibroma%2C+Plexiform+diagnosis%22&quot;&gt;diagnosis&lt;/searchLink&gt; &lt;br /&gt;&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibroma%2C+Plexiform%22&quot;&gt;Neurofibroma, Plexiform*&lt;/searchLink&gt;/&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibroma%2C+Plexiform+epidemiology%22&quot;&gt;epidemiology&lt;/searchLink&gt; &lt;br /&gt;&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibromatosis+1%22&quot;&gt;Neurofibromatosis 1*&lt;/searchLink&gt;/&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibromatosis+1+therapy%22&quot;&gt;therapy&lt;/searchLink&gt; &lt;br /&gt;&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibromatosis+1%22&quot;&gt;Neurofibromatosis 1*&lt;/searchLink&gt;/&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibromatosis+1+diagnosis%22&quot;&gt;diagnosis&lt;/searchLink&gt; &lt;br /&gt;&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibromatosis+1%22&quot;&gt;Neurofibromatosis 1*&lt;/searchLink&gt;/&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Neurofibromatosis+1+epidemiology%22&quot;&gt;epidemiology&lt;/searchLink&gt; &lt;br /&gt;&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Referral+and+Consultation%22&quot;&gt;Referral and Consultation*&lt;/searchLink&gt; &lt;br /&gt;&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Delphi+Technique%22&quot;&gt;Delphi Technique*&lt;/searchLink&gt; &lt;br /&gt;&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Consensus%22&quot;&gt;Consensus*&lt;/searchLink&gt; &lt;br /&gt;&lt;searchLink fieldCode=&quot;MM&quot; term=&quot;%22Disease+Management%22&quot;&gt;Disease Management*&lt;/searchLink&gt;&lt;br /&gt;&lt;searchLink fieldCode=&quot;MH&quot; term=&quot;%22Humans%22&quot;&gt;Humans&lt;/searchLink&gt; ; &lt;searchLink fieldCode=&quot;MH&quot; term=&quot;%22Canada%22&quot;&gt;Canada&lt;/searchLink&gt; ; &lt;searchLink fieldCode=&quot;MH&quot; term=&quot;%22Surveys+and+Questionnaires%22&quot;&gt;Surveys and Questionnaires&lt;/searchLink&gt;
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: 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.&lt;br /&gt;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%.&lt;br /&gt;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.&lt;br /&gt;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.
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  Data: &lt;i&gt;Date Created: &lt;/i&gt;20250902 &lt;i&gt;Date Completed: &lt;/i&gt;20260911 &lt;i&gt;Latest Revision: &lt;/i&gt;20260911
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  Data: 10.1017/cjn.2025.10409
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  Data: 40891257
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=cmedm&AN=40891257
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        Value: 10.1017/cjn.2025.10409
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      – Code: eng
        Text: English
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        StartPage: 708
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      – SubjectFull: Neurofibroma, Plexiform therapy
        Type: general
      – SubjectFull: Neurofibroma, Plexiform diagnosis
        Type: general
      – SubjectFull: Neurofibroma, Plexiform epidemiology
        Type: general
      – SubjectFull: Neurofibromatosis 1 therapy
        Type: general
      – SubjectFull: Neurofibromatosis 1 diagnosis
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      – SubjectFull: Neurofibromatosis 1 epidemiology
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      – SubjectFull: Referral and Consultation
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      – SubjectFull: Delphi Technique
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      – SubjectFull: Disease Management
        Type: general
    Titles:
      – TitleFull: A National Modified Delphi Consensus on the Referral and Management of NF1 Plexiform Neurofibroma.
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              Text: 2026 Sep
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