Doctors often use survival as the measure of a successful transplant. But, we want to know which parts of life after transplant beyond survival mean the most to BMT patients.
We’re leading a project to guide research on the information about transplant outcomes (results) that matter most to patients and their caregivers. We want to know the kind of outcomes information that would have been most helpful to patients preparing for transplant and life after.
For example, is it what a patient’s quality of life would be like? When a patient could go back to work or school? Or, is it something else?
What we learn may help doctors better prepare future BMT patients for life after transplant. Also, it may help patients and their families make better informed decisions about their treatment.
First: Earlier this year, a group of doctors, researchers, transplant recipients and caregivers met to talk about transplant outcomes and to gather feedback. The recipients and caregivers shared their stories, and explained how transplant teams can better prepare patients and their families for transplant and survivorship. The researchers talked about different ways to measure how healthy patients feel after transplant.
Second: They broke into small groups to talk about the types of patient-reported outcomes that could be studied and improved. Patient-reported outcomes are what you tell doctors about your health and how you’re feeling. For example:
- Physical health and fatigue (feeling very tired)
- The ability to think about, learn and remember information
- Emotional health, lifestyle and return to work or school
- Having enough information about transplant and survivorship
Next: Working groups of patients and caregivers, health care professionals and researchers are meeting to develop research questions related to patient-reported outcomes. They’ll come together again at a conference in December to share those questions. If you live in the San Diego area, watch for information later this year on how you can participate in this meeting.
Once the questions have been finalized, research is expected to begin in late 2017.
This project is paid for, in part, by the Patient-Centered Outcomes Research Institute (PCORI). PCORI gives money to support projects like ours. These projects give patients, their caregivers and health professionals the information they need to make the best decisions about health and health care.
To learn more about this project, email the project coordinator Kate Houg, Health Services Research Assistant, at email@example.com