title: Prospective international validation of the Quality of Life in Myelodysplasia Scale (QUALMS).
abstract: Disease-specific measures of quality of life can improve assessment of disease-related symptoms and psychosocial sequelae. We report on the development and validation of the Quality of Life in Myelodysplasia Scale (QUALMS), a 38-item assessment tool for patients with myelodysplastic syndromes (MDS). In 2014-2015, a multi-center cohort of patients with myelodysplasia completed the QUALMS, as well as the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (QLQ-C30) and the Functional Assessment of Cancer Therapy Anemia Scale (FACT-An); a second administration was undertaken three to six months later. A total of 255 patients from the United States, Canada and Italy participated. Median age was 72 years, 56.1% were men, and the International Prognostic Scoring System distribution was 40.4% low, 42.0% intermediate-1, 13.3% intermediate-2 and 2.3% high. QUALMS scores ranged from 24 to 99 (higher scores are better), with a mean of 67.2 [standard deviation (SD)=15.2]. The measure was internally consistent (α=0.92), and moderately correlated with the multi-item QLQ-C30 scales and the FACT-An (r=-0.65 to 0.79; all P<0.001). Patients with hemoglobin of 8 g/dL or under scored lower than those with hemoglobin over 10 g/dL (61.8 vs 71.1; P<0.001), and transfusion-dependent patients scored lower than transfusion-independent patients (62.4 vs 69.7; P<0.01). Principal components analysis revealed "physical burden", "benefit-finding", and "emotional burden" subscales. There was good overall test-retest reliability among those with stable hemoglobin (r=0.81), and significant changes for patients hospitalized or with infections between administrations (both P<0.01). These data suggest the QUALMS is a valuable tool for assessing MDS-specific quality of life in the modern treatment era.
authors.affiliation: Division of Population Sciences, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA Center for Leukemia, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA gregory_abel@dfci.harvard.edu.
authors.forename: Gregory A
authors.initials: GA
authors.lastname: Abel
authors.affiliation: Italian Group for Adult Hematologic Diseases (GIMEMA), Data Center and Health Outcomes Research Unit, Rome, Italy.
authors.forename: Fabio
authors.initials: F
authors.lastname: Efficace
authors.affiliation: Department of Medical Oncology/Hematology, Odette Cancer and Sunnybrook Health Sciences Center, Toronto, Canada.
authors.forename: Rena J
authors.initials: RJ
authors.lastname: Buckstein
authors.affiliation: Department of Malignant Hematology, H. Lee Moffitt Cancer Center & Research Institute, Tampa, FL, USA.
authors.forename: Sara
authors.initials: S
authors.lastname: Tinsley
authors.affiliation: Division of Hematology/Oncology, Department of Medicine, Columbia University Medical Center, New York, NY, USA.
authors.forename: Joseph G
authors.initials: JG
authors.lastname: Jurcic
authors.affiliation: Division of Population Sciences, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA.
authors.forename: Yolanda
authors.initials: Y
authors.lastname: Martins
authors.affiliation: Center for Leukemia, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA.
authors.forename: David P
authors.initials: DP
authors.lastname: Steensma
authors.affiliation: Division of Population Sciences, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA.
authors.forename: Corey D
authors.initials: CD
authors.lastname: Watts
authors.affiliation: Division of Hematology/Oncology, Department of Medicine, Columbia University Medical Center, New York, NY, USA.
authors.forename: Azra
authors.initials: A
authors.lastname: Raza
authors.affiliation: Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA.
authors.forename: Stephanie J
authors.initials: SJ
authors.lastname: Lee
authors.affiliation: Department of Malignant Hematology, H. Lee Moffitt Cancer Center & Research Institute, Tampa, FL, USA.
authors.forename: Alan F
authors.initials: AF
authors.lastname: List
authors.affiliation: Department of Pediatrics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Klaassen
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015897:Comorbidity; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009190:Myelodysplastic Syndromes / Q000175:diagnosis / Q000453:epidemiology* / Q000523:psychology / Q000628:therapy; D011159:Population Surveillance; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D055815:Young Adult