2020 Patient Survey Results

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.

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

DEMOGRAPHICS

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?

  • H63D = 4%

  • C282Y = 11%

  • HFE = 54%

  • Not Sure = 31%

Amount of information provided by your physician regarding your diagnosis?

  • Too little = 43%

  • None = 9%

  • About the right amount = 48%

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

Too little = 31%

None = 7%

About the right amount = 61%

Did you voluntarily donate blood before your diagnosis?

  • Yes = 63%

  • No = 37%

Please describe your overall health in the past 30 days.

  • Excellent = 6%

  • Fair = 33%

  • Good = 43%

  • Poor = 18%

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

  • Yes = 22%

  • No = 78%

Does hemochromatosis affect your day-to-day life? 

  • Yes = 65%

  • No = 35%

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

  • Excellent capacity = 9%

  • Good capacity = 33%

  • Moderate capacity = 48%

  • Severely impaired capacity = 9%

How often do you get your iron levels tested?

  • Monthly =19%

  • Every 2 months = 8%

  • Quarterly = 15%

  • Every 6 months = 42%

  • Once a year = 6%

  • Other = 11%

Are you currently receiving treatment for your hemochromatosis?

  • Yes = 70%

  • No = 30%

What type of facility performs your phlebotomy?

  • Blood Center/Blood Bank = 27%

  • Cancer Center = 8%

  • Doctor’s Office = 23%

  • Hospital = 29%

  • Not receiving phlebotomies = 13%

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

  • $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?

  • Affordable Care Act (Obamacare) = 6%

  • Medicaid = 9%

  • Medicare = 19%

  • Private health insurance = 43%

  • Uninsured = 7%

  • Other = 17%

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

  • Agree = 19%

  • Strongly agree = 15%

  • Neutral = 35%

  • Disagree = 15%

  • Strongly disagree = 17%

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

  • Cancel an appointment with the doctor = 6%

  • Delay treatment = 7%

  • Not purchase medicine = 4%

  • Postpone a doctors appointment = 4%

  • N/A = 80%

© 2020 Hemochromatosis Information Society

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