Peri-Transfusion QOL Assessments (PTQA): A New Paradigm of Transfusion Decision Support for Patients With MDS

Not Applicable

Completed

Brief Summary: 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.

Detailed Description: 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.

Recruitment & Eligibility

Inclusion Criteria

Exclusion Criteria

Age <18 years
Cr > 2
Known CHF
Unstable Angina
Hb level below 7.5 g/dL or above 8.5 g/dL
No plan for future transfusion.
Patient enrollment will happen after patient has consented and scheduled their first/next transfusion.
Patient will not be enrolled if no future transfusions are scheduled.

Arm && Interventions

Group	Intervention	Description
Peri-Transfusion QOL Assessment	Peri-Transfusion QOL Assessment	* Participants will be given a study packet containing a paper copy of the QUALMS * Study participants will fill out the survey on the day before their first/next pRBC transfusion. * Study participants will receive a second paper copy of the QUALMS, along with a stamped envelope addressed to the appropriate site * The second assessment will be scored and compared with the first, and both the patient and provider will be sent a report with the results

Primary Outcome Measures

Name	Time	Method
Number of Hospitalizations (for Both Transfusion Groups)	Two months	Assessed via medical record review at two months post index transfusion
Number of Participants With Receipt of Second Transfusion	Two months	Assessed via medical record review at two months post index transfusion
Median Difference in Units pRBCs (for Those Transfusion-dependent)	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.
Number of Clinic Visits (for Both Transfusion Groups)	Two months	Assessed via medical record review at two months post index transfusion

Secondary Outcome Measures

Name	Time	Method
Perceptions of Impact of PTQA on Care	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.
Perceived Stress by the Associated Scales	Two months	Assessed via follow-up survey at 2 months after index transfusion
Number of Patients With Decisional Regret	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.
PTQA Utilization	Two months	Assessed via follow-up survey at 2 months after index transfusion