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Protocol No. UW17096

Principal Investigator Sesto, Mary

Phase Pilot/Feasibility

Age Group Adult

Scope Local

Sponsor Type Institutional

Title Improving Survivorship Care Planning for Bone Marrow Transplant Survivors: A Sociotechnical Systems Approach

Objective The purpose of this research study is to develop more effective survivorship care plans for BMT survivors. This research is being done because a survivorship care plan should be prepared by the transplant team at the completion of a patientÂ’s cancer treatment and should provide them with a summary of treatment delivered and a detailed plan of ongoing care, including follow-up schedules for visits and testing, as well as recommendations for early detection and management of treatment-related effects and other health problems.
Starting with existing University of Wisconsin Carbone Cancer Center survivorship care plans and information gathered from observing and talking with clinicians who care for BMT survivors, our research team that includes University of Wisconsin Electronic Health Record analysts will engage in a design-and-evaluation process to create a survivorship care plan that is specific to BMT survivors.
We would patient's to evaluate the survivorship care plan for its usefulness, taking into account care plan content, format, and delivery method of plans. We would also like to assess there overall satisfaction with the plan. We will ask them to evaluate the usefulness and their satisfaction with the plan by completing the survey. This feedback will enable us to develop a more effective and useful BMT survivorship care plan, taking into account the feedback from patients and the other survivors have provided on the survey.

Treatment Patient's will complete a survey that will be mailed to them

Description To develop a more effective survivorship care plan for BMT survivors

Key Eligibility
  • Have a diagnosis of a hematologic condition, such as a malignant or pre-malignant condition. Examples of eligible diagnoses include :
  • Leukemias, e.g.: acute lymphoblastic leukemia (ALL), acute myeloid leukemia (AML), chronic myeloid leukemia (CML), chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL)
  • Myelodysplastic syndrome (MDS)
  • Multiple myeloma (MM)
  • Lymphomas, e.g. BurkittÂ’s, Diffuse Large B-Cell, follicular lymphoma This is not intended to be an all-inclusive list, thus, Drs. Juckett and/or Tevaarwerk will serve as arbitraters of eligible dignoses.
  • Have been treated with a stem cell or bone marrow transplant and are at least 12 months from the date of the last transplant
  • Can not have relapsed (i.e., have a hematologic malignancy) and can not be actively undergoing treatment for the malignancy (maintenance treatment is allowed)
  • Must be able to complete and willing to answer the survey questions in English

  • Applicable Disease Sites Hematologic cancers, other; Leukemia; Lymphoma; Multiple Myeloma

    Status Open

    Participating Institutions UW Hospital and Clinics