Author of

• 35539

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  P39 - Patient Advocacy (ID 168)

  • Event: WCLC 2020
  • Type: Posters
  • Track: Patient Advocacy
  • Presentations: 1
  • Moderators:
  • Coordinates: 1/28/2021, 00:00 - 00:00, ePoster Hall

  • 35543

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    P39.04 - ALK Positive UK: 42% of UK Patients do not Receive Regular Brain MRI Scans Despite Data Showing up to 70% of Patients Develop Brain Metastases (ID 3476)

    00:00 - 00:00  |  Presenting Author(s): Debra Montague
    • Abstract
    • Slides

    Introduction
    

    ALK-positive is a rare form of lung cancer caused by the abnormal rearrangement of the anaplastic lymphoma kinase gene. Approximately 85,000 people live in the UK with a lung cancer diagnosis, of which about 4% test positive for the ALK gene rearrangement.

    ALK Positive UK is a non-profit organisation established in 2018.

    Methods
    

    The charity recently carried out an in-depth, online patient survey to capture real-world data. Collected data included symptoms, diagnosis, treatment and disease management and also brain metastases and MRI scanning. The survey was distributed to 300 members of ALK Positive UK’s patient community; 89 participants engaged in the survey.

    Results
    

    The data showed that the average age of survey respondents was 54 – the youngest being 21 and the oldest being 77.

    32% of the respondents have been living with their diagnosis for 12 months or less, 24% for 13-24 months and 16% for 25-36 months. 6% of respondents have been living with their diagnosis for 85 months or longer.

    Of the 86 respondents that answered, 43 (50%) received a brain MRI scan at, or shortly after diagnosis. The following graphs show the frequency of subsequent, regular brain MRI scans according to healthcare service and region.

    

    

    Conclusion
    

    The frequency of patients receiving regular brain MRI scans varies considerably across the UK: patients in the South West and North East are least likely to receive regular brain MRIs.

    42% of NHS (or equivalent) patients do not receive regular brain MRIs, despite data suggesting up to 70% of ALK positive patients developing brain metastases.

    Question – would a guideline on frequency of brain MRI scanning for ALK positive patients be appropriate for the UK?

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