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2020 Patient Survey Results

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BACKGROUND

Our last survey in 2015 provided us with helpful information about hereditary hemochromatosis and the cost of treatment. The 2020 survey covered even more topics.

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We collect this information to develop policies and services that better meet the needs of hemochromatosis patients.

DEMOGRAPHICS

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Total number of responses: 54

  • Male = 15

  • Female = 39

Average age of respondents: 57

Average age at time of diagnosis: 48

 

What genetic mutation were you diagnosed with?

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  • H63D = 4%

  • C282Y = 11%

  • HFE = 54%

  • Not Sure = 31%

Amount of information provided by your physician regarding your diagnosis?

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  • Too little = 43%

  • None = 9%

  • About the right amount = 48%

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Amount of information provided by your physician regarding your treatment options?

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Too little = 31%

None = 7%

About the right amount = 61%

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BloodDonations.JPG

Did you voluntarily donate blood before your diagnosis?

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  • Yes = 63%

  • No = 37%

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Please describe your overall health in the past 30 days.

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  • Excellent = 6%

  • Fair = 33%

  • Good = 43%

  • Poor = 18%

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Have you been in the hospital in the last 12 months? 

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  • Yes = 22%

  • No = 78%

Does hemochromatosis affect your day-to-day life? 

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  • Yes = 65%

  • No = 35%

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In your opinion, at what capacity can you perform everyday activities?

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  • Excellent capacity = 9%

  • Good capacity = 33%

  • Moderate capacity = 48%

  • Severely impaired capacity = 9%

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How often do you get your iron levels tested?

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  • Monthly =19%

  • Every 2 months = 8%

  • Quarterly = 15%

  • Every 6 months = 42%

  • Once a year = 6%

  • Other = 11%

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Treatment Yes No.JPG

Are you currently receiving treatment for your hemochromatosis?

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  • Yes = 70%

  • No = 30%

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What type of facility performs your phlebotomy?

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  • Blood Center/Blood Bank = 27%

  • Cancer Center = 8%

  • Doctor’s Office = 23%

  • Hospital = 29%

  • Not receiving phlebotomies = 13%

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How much is your out of pocket cost for your phlebotomy treatment per visit?

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  • $0 = 60%

  • $26-50 = 11%

  • $51-75 = 2%

  • More than $75 = 8%

  • Not receiving phlebotomies = 19%

Which health insurance coverage provider are you currently enrolled with?

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  • Affordable Care Act (Obamacare) = 6%

  • Medicaid = 9%

  • Medicare = 19%

  • Private health insurance = 43%

  • Uninsured = 7%

  • Other = 17%

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Please state your level of agreement to the statement: Health insurance is affordable to you.

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  • Agree = 19%

  • Strongly agree = 15%

  • Neutral = 35%

  • Disagree = 15%

  • Strongly disagree = 17%

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Has a lack of health insurance coverage made you consider one of the following?

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  • Cancel an appointment with the doctor = 6%

  • Delay treatment = 7%

  • Not purchase medicine = 4%

  • Postpone a doctors appointment = 4%

  • N/A = 80%

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