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 improvement noted during the transfusion to 24 hours post-transfusion. Although transfusion did not alleviate symptoms of fatigue completely, participants reported improved appetite and decreased lethargy. One participant reported having a better frame of mind post-transfusion. Effect of transfusion on symptom relief varied between participants, ranging from several days to three weeks. Side effects of transfusion: Four participants reported side effects accompanying some transfusions, which included: confusion described as "heaviness in the head", headache, rise in temperature, itchiness/rash, epistaxis, and/or lightheadedness. Side effects were short-lived and not severe. In addition to the patient derived findings reported above, we identified 4 challenges to performing this qualitative study in the MDS population: MDS affects an aging population with several comorbidities, which may further compromise well-being; patients live sedentary lifestyles, which may impede their ability to assess subtle changes in well-being; caregiver presence during the interview can impact the patient perspective; and, the timing of interviews can affect the quality of data depending on the participant's level of fatigue.
CONCLUSION: Results of this study reveal that the experiences of patients who receive RBC transfusion are diverse and are not consistent between consecutive transfusion episodes. Considering the findings, an appropriate QoL tool for use in this population should be short and quick to complete, disease specific, have an emphasis on fatigue and should have a short recall period to capture transient changes in well-being.
Leber: Celgene Canada: Honoraria, Membership on an entity's Board of Directors or advisory committees; Novartis Canada: Honoraria, Membership on an entity's Board of Directors or advisory committees.