A Qualitative Research Study to Understand Post-Transfusion Well-Being in Patients with Myelodysplastic Syndromes

• Published in: Blood 2015-12, Vol.126 (23), p.4446-4446
• Main Authors: Sholapur, Naushin S., Lane, Shannon, Hillis, Christopher M, Crowther, Mark A., Leber, Brian, Cook, Richard, Barr, Ronald, Heddle, Nancy M.
• Format: Article
• Language: English
• ISSN: 0006-4971; 1528-0020
• DOI: 10.1182/blood.V126.23.4446.4446

INTRODUCTION Patients with myelodysplastic syndrome (MDS) frequently receive red blood cell (RBC) transfusions to alleviate symptoms of fatigue and improve well-being, yet their experiences of transfusion have not been previously characterized. The aim of this qualitative study was to explore the changes in well-being that patients with MDS experience with RBC transfusion and hence, to inform the selection of Quality of Life (QoL) tools for future studies in this transfused patient population. METHODS: An applied qualitative approach was used for the study. Adult patients with MDS receiving chronic RBC transfusions at two hematology/oncology outpatient clinics between August 1, 2013 and March 31, 2014 were invited to participate in a 10-20 minute semi-structured interview. Patients were excluded if they could not provide informed consent. Interviews elicited information pertaining to: side effects and benefits of transfusion therapy; the patient's experience of anemia and fatigue prior to, during, and after transfusion; and the impact of transfusion on their QoL. Interviews were recorded, transcribed, and analyzed using QSR's NVivo 10 software. Standard techniques of qualitative content analysis were used. Two researchers independently reviewed all transcripts to identify and develop codes to categorize information from the interviews. The coding scheme was applied to the interview information, compared for agreement with discrepancies resolved and refined using consensus. The final version of the coding scheme was applied to all transcripts by one researcher. Informational content of the data within each code were reviewed and interpreted to form summative statements. Statements were grouped, organized and summarized under 3 major themes: participant experience of fatigue, impact of RBC transfusion, and side effects of transfusion. The study was approved by the local research ethics board and informed consent was obtained from all participants. RESULTS: 12/16 (75%) of patients approached consented to participant in the study (median age: 77; IQR, 72, 80 years; 2 female). Participant experience of fatigue: All participants reported experiencing fatigue, which significantly impacted their activities of daily living. Severity of fatigue prior to transfusion varied between participants, and for two participants' levels of fatigue also varied between transfusions. Impact of RBC transfusion: Time to recovery from fatigue varied between participants, ranging an