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Center for International Blood and Marrow Transplant Research

Patients want info about quality of life after transplant

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  • Patients can help researchers design studies

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Patients can help researchers design studies 

It’s useful to study patients’ quality of life. That’s from a survey of ​​800 patients, health care providers, and caregivers. EBMT, the European professional group for blood and marrow transplant and cell therapy, conducted the survey. 

Nearly 100% of people said that it’s very important that researchers ask patients directly about their quality of life, especially: 

  • Symptoms (pain, fatigue) 

  • Emotions 

Patients want easy ways to share 

8 of 10 people preferred to take surveys online rather than on paper or over the phone. And 7 of 10 patients preferred to do surveys at home, not at the hospital. 

Patients can help plan studies 

Almost everyone (9 of 10 people) said it’s very important to invite patients to help design studies. The top 2 reasons were: 

  • To make sure research helps patients in practical ways 

  • To focus on what matters to most patients 

After a study is done, doctors should share the results with patients who helped in that study. 

Reporting patients’ experiences in the US 

In the US, the Center for International Blood and Marrow Transplant Research (CIBMTR) surveys patients about their experiences—called patient-reported outcomes. Their research showed that patient-reported outcomes can help predict patients’ health. Patients’ quality of life is just as important to measure as lab values. 

CIBMTR thanks study participants. This plain-language summary was written by Jennifer Motl at the Medical College of Wisconsin and reviewed by an author of the full article. ©2025 by CIBMTR, license CC BY-SA 4.0. 

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Source

Schoemans H, Burns LJ, Liptrott SJ, et al. Patient engagement in hematopoietic stem cell transplantation and cell therapy: a survey by the EBMT patient engagement task force & transplantation complications working party. Bone Marrow Transplantation. 2024. Epub 2024/06/19. PMC11371514. doi: 10.1038/s41409-024-02290-7. 

About This Research Summary

This information is provided on behalf of the Consumer Advocacy Committee of CIBMTR® (Center for International Blood and Marrow Transplant Research®). CIBMTR is a research collaboration between the Medical College of Wisconsin and NMDP. 

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