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FEATURE STORIES

Review of patient-centered hematopoietic cell transplant outcomes research project

The Patient-Centered Outcomes Research (PCOR) project led by our Health Service Research Group, aimed to recruit and engage a broad community of patients and other key stakeholders in patient-centered outcomes research in HCT; identify and prioritize HCT-related patient-centered outcomes that will inform the development of an HCT PCOR agenda; and communicate and promote the HCT PCOR agenda, informed by the program, to all stakeholders. At Tandem 2017, PCOR working groups presented their findings as well as areas of potential research to be developed. Focus areas included: sexual health and relationships; physical health and fatigue; emotional, cognitive and social health; patient, caregiver and family education and support; models of survivorship care delivery; and the final focus area was financial burden.

As an attendee to this session, it was very enlightening to see the perspectives of the patients, caregivers, and healthcare professionals in regard to the difficulties they have in approaching sensitive topics post-transplant as well as explaining their feelings.

Many of the clinicians that were in the working groups stated how hard it can be to approach these topics with their patients due to the sensitive nature and not having experienced transplant and effects of proceeding to a “normal life” post-transplant. Other attendees offered their support and praised the working groups on the efforts they have made to these focus areas. Many stated how important this research was in helping support our patients post TX.  Based on speaking with attendees, as well as working group participants at this session, the need further development and research seems evident.

Introducing Susan Leppke

We are excited to introduce our new Director, Public & Payer Policy, Susan Leppke. Susan comes to the NMDP/Be The Match with an extensive background in solid organ transplant policy and data research. In her new role, Susan will lead both the Payer Policy and Legislative Relations teams. We look forward to connecting you with Susan in the coming months.

PATIENT PERSPECTIVE

Tips for managing medicines after transplant

Taking medicines as directed after transplant is important for a transplant recipient’s health, but it’s not easy to do. Two transplant recipients share tips and what worked for them. Read full article.

Understanding transplant and how it works

Teleconference April 13, 2017, 12:00 to 1:15 Central. View details and register.

Education Opportunities

CME Activities: Addressing clinical challenges in AML to optimize treatment plans
Panelists use case studies to present the latest research on key areas affecting clinical decision-making for patients with acute myelogenous leukemia (AML). Topics include: optimal timing of treatments for patients in first remission, exploring treatment options for older patients, and risk stratification using patient cytogenetic and molecular markers. Access activities.

Webinar: Acute Myeloid Leukemia (AML): Treatment Options, including BMT, Care and Support.
May 16, 2017. Registration and additional information to follow.

On-Demand: HCT & the Medicare Cost Report
Medicare experts will provide an overview of the basic elements of the MCR and take a deeper dive into HCT sections. View webinar.

HCT Research: New Targeted Therapies to Treat or Prevent Chronic GVHD

Cutler CS, et al. Blood In this review, the authors summarize results of new chronic graft-versus-host disease (GVHD) therapeutic techniques. Many of these new approaches target specific immunologic pathways now known to play a role in chronic GVHD. Read more.

Upcoming Conferences: CMSA

Stop by our booth at the CMSA 2017 Annual Conference and Expo June 26-30, 2017, Austin Texas.

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If you have any questions or need additional information, please contact the Payer Policy Team at payerpolicy@nmdp.org.

All of our resources are available on our website: Payer.BeTheMatchClinical.org

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