A longitudinal research study out of an Austrian institute identified several disease-specific and patient-related factors that are associated with poor health-related quality of life (HRQOL) in patients newly diagnosed with myelodysplastic syndromes (MDS). The results were presented at the 62nd ASH Annual Meeting & Exposition.
“HRQOL, a unique source of patient information, represents a valuable parameter for assessing treatment burden and therapy response in MDS,” said author Igor Stojkov, MSc, of the Institute of Public Health, Medical Decision Making, and Health Technology Assessment, based at the University for Health Sciences, Medical Informatics, and Technology in Tirol, Austria. “These determinants provide valuable knowledge toward improved personalized treatment approaches and early preventive measures in MDS.”
The institute analyzed longitudinal data from the European MDS Registry, a prospective, multicenter repository for data on patients newly diagnosed with MDS in 17 countries. The registry includes information from approximately 2,500 patients and continues to add patients.
The current study included 2,205 patients who had baseline data within 100 days of diagnosis, as well as two follow-up visits. The study’s two primary measurements to determine HRQOL were scores on the EuroQol Five-Dimension Three-Level Index (EQ-5D) and a visual analog scale. It also assessed data from the Karnofsky Performance Index (KPI); Sorror Comorbidity Index; and clinical information such as serum ferritin, hemoglobin, and transfusion variables (dependence, number, and density).
The researchers performed multivariate analyses to identify any associations between disease-specific or patient-related parameters and HRQOL. They found that certain characteristics were associated with low HRQOL:
- Age older than 75 years
- Comorbidities, as measured by the MDS-Specific Comorbidity Index
- Female gender
- Low KPI score
- Serum ferritin levels ≥1,000 μg/L
The researchers also assessed secondary outcomes by evaluating specific dimensions on the EQ-5D:
- Usual activities
- Pain and discomfort
- Anxiety and depression
About 10% to 11% of patients reported impairment in the dimension self-care, and about 30% of patients reported impairment in the other four EQ-5D dimensions. Specifically, female gender, low KPI score, low Sorror Comorbidity Index score, low hemoglobin count, and transfusion-related variables were major determinants of impairment in all five dimensions. On the other hand, higher hemoglobin levels and higher KPI scores were associated with better HRQOL.
Mr. Stojkov said the institute is currently conducting studies to evaluate HRQOL and specific interventions.