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| Name | Class |
|---|---|
| National Marrow Donor Program | OTHER |
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The purpose of this pilot study is to determine the feasibility of conducting a study of out-of-pocket costs and the long-term financial impact of allogeneic stem cell transplant.
Allogeneic hematopoietic stem cell transplantation (HSCT) is the indicated treatment for many life-threatening illnesses affecting both adults and children. Transplant recovery and late effects require long-term medical care. At the same time that the family faces a medical crisis, a resulting financial crisis may also be pending, but is often pushed to the background due to the necessity of first preserving life. A large proportion of patients undergoing HSCT incur significant financial burden from out-of-pocket costs and a decrease in household income. Predetermined variables, both medical and demographic, gathered at the pre-transplant clinical consultation have the potential to predict the patients at greatest financial risk. This study will describe both the out-of-pocket costs and the income changes that may result from HSCT to help patients and their caregivers have a clearer picture of these costs and develop a financial plan. Health care providers can utilize this information to better inform patients and connect them to resources.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| allogeneic stem cell recipients | Pediatric and adult allogeneic stem cell transplant recipients and their care givers. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Household financial data collection | Other | Baseline financial survey pre-transplant, financial diary post-transplant every two weeks for 3 months, and financial questionnaire via phone survey at 6, 12, 18 and 24 months post-transplant. |
| Measure | Description | Time Frame |
|---|---|---|
| To study the feasibility of using a patient maintained diary to capture out-of-pocket costs over the first 3 months following allogeneic HSCT | Pre-transplant and for 3 months post-transplant |
| Measure | Description | Time Frame |
|---|---|---|
| To determine the feasibility of conducting interviews to collect financial information at 6, 12, 18 and 24 months after allogeneic HSCT | 6, 12, 18 and 24 month time points post-transplant |
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Inclusion Criteria:
Exclusion Criteria:
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Pediatric and adult allogeneic stem cell transplant recipients and their care givers from three U.S. transplant medical centers.
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| Name | Affiliation | Role |
|---|---|---|
| Navneet Majhail, MD, MS | University of Minnesota / CIBMTR | Study Chair |
| Douglas Rizzo, MD, MS | Medical College of Wisconsin / CIBMTR | Study Chair |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Minnesota | Minneapolis | Minnesota | 55455 | United States | ||
| Roswell Park Cancer Institute |
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| Buffalo |
| New York |
| 14263 |
| United States |
| Medical College of Wisconsin | Milwaukee | Wisconsin | 53226 | United States |