Sikai Song1, Andrew J Cohen2, Hansen Lui1, Nnenaya A Mmonu1, Hartley Brody2, German Patino1,3, Aron Liaw1, Christi Butler1, Kirkpatrick B Fergus1, Jorge Mena1, Austin Lee1, Jeremy Weiser1, Kelly Johnson1, Benjamin N Breyer4,5. 1. Department of Urology, University of California, San Francisco, San Francisco, CA, USA. 2. James Buchanan Brady Urological Institute, Johns Hopkins School of Medicine, Baltimore, MD, USA. 3. Hospital Universitario San Ignacio, Bogota, Colombia. 4. Department of Urology, University of California, San Francisco, San Francisco, CA, USA. Benjamin.Breyer@ucsf.edu. 5. Department of Biostatistics and Epidemiology, University of California, San Francisco, San Francisco, CA, USA. Benjamin.Breyer@ucsf.edu.
Abstract
PURPOSE: Complementary and alternative medicine (CAM) use is common amongst cancer patients. However, there is growing concern about its safety and efficacy. Online crowdfunding campaigns represent a unique avenue to understand the cancer patient's perspective for using CAM or declining conventional cancer therapy (CCT). METHODS: Five hundred GoFundMe campaigns from 2012 to 2019 detailing financial need for cancer treatment were randomly selected and reviewed for endorsement of CAM use, reasons for using CAM, and reasons for declining CCT. Descriptive statistics were used to compare patient and campaign characteristics between 250 CAM users and 250 non-CAM users. RESULTS: Compared to non-CAM users, CAM users were more likely to be female (70% vs. 54%, p < 0.01), to report more stage IV cancer (54% vs. 12%, p < 0.01), and to have a history of delayed, missed, or misdiagnosis (10% vs. 4%, p < 0.01). Reasons for using CAM include endorsing curative/therapeutic effects 212 (85%), pain/stress reduction 137 (55%), and dissatisfaction with current or past medical treatment options 105 (42%). 87 (35%) CAM users that declined CCT reported that they wanted to try to fight off cancer using CAM first 57 (61%), that CCT was too "toxic" to the body 39 (42%), and cancer was already too advanced, so that CCT would be futile or too aggressive 25 (27%). CONCLUSION: Cancer patients on GoFundMe using CAM highly value quality of life, comfort, and autonomy. Physicians should educate themselves on CAM to set realistic expectations and provide comprehensive counseling of the risks and benefits of CAM usage to patients who choose to use CAM to either augment or completely replace CCT.
PURPOSE: Complementary and alternative medicine (CAM) use is common amongst cancerpatients. However, there is growing concern about its safety and efficacy. Online crowdfunding campaigns represent a unique avenue to understand the cancerpatient's perspective for using CAM or declining conventional cancer therapy (CCT). METHODS: Five hundred GoFundMe campaigns from 2012 to 2019 detailing financial need for cancer treatment were randomly selected and reviewed for endorsement of CAM use, reasons for using CAM, and reasons for declining CCT. Descriptive statistics were used to compare patient and campaign characteristics between 250 CAM users and 250 non-CAM users. RESULTS: Compared to non-CAM users, CAM users were more likely to be female (70% vs. 54%, p < 0.01), to report more stage IV cancer (54% vs. 12%, p < 0.01), and to have a history of delayed, missed, or misdiagnosis (10% vs. 4%, p < 0.01). Reasons for using CAM include endorsing curative/therapeutic effects 212 (85%), pain/stress reduction 137 (55%), and dissatisfaction with current or past medical treatment options 105 (42%). 87 (35%) CAM users that declined CCT reported that they wanted to try to fight off cancer using CAM first 57 (61%), that CCT was too "toxic" to the body 39 (42%), and cancer was already too advanced, so that CCT would be futile or too aggressive 25 (27%). CONCLUSION:Cancerpatients on GoFundMe using CAM highly value quality of life, comfort, and autonomy. Physicians should educate themselves on CAM to set realistic expectations and provide comprehensive counseling of the risks and benefits of CAM usage to patients who choose to use CAM to either augment or completely replace CCT.
Entities:
Keywords:
Cancer treatment; Complementary and alternative medicine; Crowdfunding; Patient perspective; Social media
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