title: Quality of life and use of red cell transfusion in patients with myelodysplastic syndromes. A systematic review.
abstract: The main treatment for many patients with Myelodysplastic Syndromes (MDS) remains red cell transfusion to attenuate the symptoms of chronic anemia. Fatigue can reduce a patient's health related quality of life (HRQoL), but there is little understanding of the optimal use of transfusions to improve this. A systematic review was performed to identify and appraise publications reporting the use of HRQoL instruments in patients with MDS. A total of 17 separate studies were identified that used 14 HRQoL instruments, but only one MDS disease specific HRQoL instrument (QOL-E) was reported. Two well established HRQoL instruments were most often used in MDS research (variants of the Functional Assessment of Cancer Therapy (FACT) and the European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire (QLQ-C30)). Several common problems were identified in the published literature including a lack of power calculations to detect clinically relevant changes, small sample sizes and significant attrition rates for completion of HRQoL assessments, all of which limit the strength of any conclusions. There is no consensus on the optimal transfusion regimen to improve HRQoL in transfusion-dependent MDS. Future research into HRQoL within MDS is a pressing requirement. Studies should focus on the domains that are of most clinical importance to the patient as well as traditional quantitative changes of hemoglobin concentration.
authors.affiliation: Pathology Department, Hull Royal Infirmary, Hull, United Kingdom.
authors.forename: Deborah J
authors.initials: DJ
authors.lastname: Pinchon
authors.forename: Simon J
authors.initials: SJ
authors.lastname: Stanworth
authors.forename: Carolyn
authors.initials: C
authors.lastname: Dorée
authors.forename: Susan
authors.initials: S
authors.lastname: Brunskill
authors.forename: Derek R
authors.initials: DR
authors.lastname: Norfolk
mesh_terms: D017707:Erythrocyte Transfusion; D006801:Humans; D009190:Myelodysplastic Syndromes / Q000523:psychology / Q000628:therapy*; D011788:Quality of Life