Akron Children’s Hospital cares for the largest hemophilia B population in the world – members of the Amish community located in Holmes County, Ohio. Since 1989, the hospital’s Hemostasis and Thrombosis Center has conducted a monthly outreach clinic in Millersburg to reach this patient population.
Individuals with hemophilia lack an essential protein necessary for clotting, so the primary treatment for bleeding episodes is to administer clotting factor intravenously.
However, clotting factor is expensive and a single bleeding episode can cost thousands of dollars to treat.
Due to this high cost of treatment, a lack of health insurance, transportation difficulties and other cultural barriers, including an acceptance of illness as God’s will, patients in the Amish community have historically delayed treatment with clotting factor. They are also at a greater risk for injury and subsequent joint bleeding due to their occupations as farmers, carpenters and construction workers.
All of these factors place the Amish at a higher risk for debilitating hemophilia complications and even higher costs for treatment.
In addition, the Amish community is more likely to have severe dental health problems due to a lack of preventative care and low levels of natural fluoride in their well water. Left untreated, dental disease further complicates the care of hemophilia patients, often requiring treatment with clotting factor.
Seeing this disparity in care, outreach nurse educator Irene Boehlefeld, BSN, RN, CPON, Hematology Services, engaged an Amish Advisory Task Force, comprising leaders from the Amish community, to help navigate cultural barriers surrounding treatment.
The task force supported Boehlefeld’s efforts to develop a culturally sensitive, home care model for hemophilia self-management that included:
A total of 120 patients and family members attended the home infusion training classes.
Akron Children's Hemostasis and Thrombosis Center also partnered with Kno-Ho-Co-Ashland Community Action Commission to establish a dental clinic in Millersburg.
The staff partnered with the Ohio Department of Health (ODH) to use their dental van, train nurses on how to apply fluoride varnish and establish a culturally appropriate dental health curriculum to use in schools and during hemostasis and thrombosis clinic visits.
Although the two-year Centers for Disease Control and Prevention (CDC) grant period for this outreach effort has ended, many members of the advisory task force are continuing to meet to address the ongoing health care needs of the Amish community.
This initial effort was successful in:
“Continued monitoring for complications of bleeding is necessary to realize the long-term benefits of home infusion program participation,” said Boehlefeld.
This outreach effort has made an impact organizationally, regionally and nationally. At the organizational level, it has resulted in the development of a coordinated approach for disease management, prevention of hemophilia complications and improved communication between healthcare providers and the Amish community.
Regional impact includes:
Preliminary results of the dental clinic suggest increases in:
Nationally, the CDC recognized the program as an innovative approach to achieving high-quality, effective and efficient nursing care and has adopted four of the teaching manuals co-authored by Boehlefeld.
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