Discussion Board Forums General Discussion Please Help If You Can!

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  • #95866
    gavin
    Moderator

    Thanks Beatriz! And yes, the research will most certainly continue! And many many thanks to everyone who responded to the survey as well. We had a spectacular response from everyone. Thank you all!

    Joe, many thanks to you as well for your points and observations. You are right in that more questions should be asked and I got in touch with Donna about your concerns regarding this. Future surveys will be done on other issues that affect patients and they will be more detailed regarding collecting of info/experiences etc.

    Many many thanks to all!

    Gavin

     

    #95843
    beatriz
    Participant

    Done! hope the research continues as both surgeries are extremely invasive with lots of side effects (infections being the worst).

    #95820
    jpmski
    Participant

    Gavin,

     

    I appreciate how short you kept your survey, but it should probably have more questions.  My mother had both of these procedures but the survey only lets you select one.  I would ask a bunch of question about effectiveness, recovery time, how often did they have to be changed.

    I don’t really feel the need to rate my last experience on Mcdonalds, but I’d be willing to spend some time on this.

     

    Joe

    #95774
    gavin
    Moderator

    Hi all,

    Please can you help us with this survey.

    This survey is an incredibly important milestone in the involvement of cholangiocarcinoma patients in making treatment decisions. It is the first time that CCF has been asked to participate in a patient-centered research initiative in coordination with many leading cancer institutes. This research has the potential to not only measure the effectiveness of the procedures, but to also ensure that stakeholders can be fully informed about the critical choice between having an ERCP vs. PTC as few studies have compared their merits and disadvantages.

    https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=46429  (ERCP) – uses a flexible scope passed through the mouth to the bile duct

    https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=46238  (PTC) – places a catheter through the skin into the bile duct

    What to expect

    §  Patients and/or caregivers should take this brief survey, even if neither of these procedures was performed.

    §  Only 4 questions!

    §  Takes 1-2 minutes to complete!

    https://www.surveymonkey.com/r/6NTWVKV

    Thanks loads!!

    Gavin

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