Dana Farber Cancer Institute
Boston, Massachusetts, 02215, United States
NCT Number: NCT03660228
This research study is evaluating how to best tailor blood transfusion decisions to match the quality of life changes experienced by individual patients with MDS.
Looking for future studies?
Notify Me18 year and older
All sexes
Interventional
Not applicable
Boston, Massachusetts, 02215, United States
Each patient with MDS reacts differently to blood transfusions; some will feel better after transfusion, while others may not. The main purpose of this survey study is to determine whether it is possible to use quality of life changes - as measured by a validated questionnaire - experienced by individual patients to help physicians and patients with MDS make decisions regarding future blood transfusions. This research is being done because the investigators hope to help doctors better understand the impact of blood transfusions on the quality of life of each patient.
The study uses a standardized MDS-specific quality of life questionnaire that participants will fill out before and after an upcoming transfusion. The investigators will compare the scores of these questionnaires and notify both the participant and provider if the participant has experienced any changes (positive or negative) in his/her quality of life before and after transfusion. The investigators' hope is that doctor-patient teams will use this quality of life information to determine whether the participant should continue receiving transfusions, decrease the frequency of transfusions, or stop receiving transfusions altogether if not needed.
Healthy volunteers accepted: No
Only the study team can determine whether someone qualifies for participation.
Inclusion criteria
Exclusion criteria
Participants will undergo a peri-transfusion quality of life assessment (PTQA) using the Quality of Life in Myelodysplasia Scale (QUALMS)
Time frame: Two months
Assessed via medical record review at two months post index transfusion
Time frame: Two months
Assessed via medical record review at two months post index transfusion. We identified historical matches for 25 patients (21 from Dana-Farber, 1 from Wake Forest, and 3 from Yale) and compared the median number of red cell units in these patients to the PTQA group over 2 months.
Time frame: Two months
Assessed via medical record review at two months post index transfusion
Time frame: Two months
Assessed via medical record review at two months post index transfusion
Time frame: Two months
Assessed via follow-up survey at 2 months after index transfusion
Time frame: Two months
Assessed via follow-up survey at 2 months after index transfusion. Of the 38 patients who completed PTQA, 6 did not complete the 2-month follow-up survey, and 1 passed away.
Time frame: Two months
Percentage of patients reporting that PTQA impacted their treatment decisions. Assessed by a binary (yes/no) on the follow-up survey at 2-months after index transfusion.
Time frame: Two months
Assessed via follow-up survey at 2 months after index transfusion
Dana-Farber Cancer Institute
Other
PTQA: A New Paradigm of Transfusion Decision Support for Patients With MDS
OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.
View the official ClinicalTrials.gov record (opens in a new tab)This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.
Published trials that share one or more normalized conditions with this study.
NCT05024994
Acute Myeloid Leukemia, Bone Marrow Diseases
Miami, Florida, United States
View Trial DetailsNCT00534430
Anemia, Anemia, Refractory
View Trial DetailsNCT03932643
Acute Myeloid Leukemia, Bone Marrow Diseases
Omaha, Nebraska, United States
View Trial DetailsNCT03434730
Acute Leukemia, Acute Lymphoblastic Leukemia
New York, United States
View Trial Details