This survey project was at the request of Iron Disorders Institute (IDI). Our goal was to learn of
any changes in the relationship between patients and health care providers since the first hemochromatosis
patient survey in 1997-1999. Further, we wanted to know the patient’s concerns and
interests so that programs and services could be geared to those needs.
There were significant differences between the 2010 and the 1997-1999 projects. The 1997-1999
survey was a two-year project, targeted an International population, involved multiple patient
advocacy groups, which were permitted to promote and select patients willing to participate.
By comparison, the 2010 survey was a one-year project limited to hemochromatosis patients
living in the United States. Patients were randomly selected and not based on willingness to
participate. Selection and survey disbursement was limited to four months.
Strict protocols (procedures) were used to protect the privacy of the patient information. The role
of The Centers for Disease Control & Prevention (CDC) was to fund, establish parameters of the
project and to create the final survey instrument. The Medical University of South Carolina
(MUSC) IRB approved the survey instrument, informed consent cover letter, protocol to analyze
the data and the wrap up phone campaign script. The role of Iron Disorders Institute (IDI) was to
reach 5,000 randomly selected hemochromatosis patients for participation. The recruitment
protocol was approved by the IDI IRB Chairman, Arthur Caplan, Ph.D., Emmanuel and Robert
Hart, Professor of Bioethics and Director of the Center for Bioethics at the University of Pennsylvania.
Unanticipated was the significant number of patients who got their own diagnosis and sought
treatment without benefit of their doctor and therefore disqualified themselves. Others disqualified
themselves because they were confused about eligibility: they “had the genes but not the
disease” or they were being treated for iron overload (phlebotomy) but did not have the specific
diagnosis of hemochromatosis. Of those who chose not to participate reasons stated included: too
busy (job, family); lost survey(s); privacy/trust (concerned about loss of job or insurance); too ill;
could not recall the year of diagnosis; wrong diagnosis; don’t like surveys; or no value in participating;
4 people were displaced from their homes due to weather. Fifty-four (54) deaths attributed
to complications of hemochromatosis were reported.
A summary paper will be forthcoming in 2011, which will provide final results and detailed observations.
If you are interested in being notified about this publication, please email me:
Cheryl Garrison, Executive Director, Iron Disorders Institute (IDI)
To view the preliminary results click on the link below:
Posted on Mon, November 8, 2010
by David Garrison