Improving accuracy of prognosis in patients with myelodysplastic syndromes using self-reported quality of life data. Opportunities for a new research agenda in developing prognostic models

Patient‐reported outcomes enhance the survival prediction of traditional disease risk classifications: An international study in patients with myelodysplastic syndromes

“…In a previous study, we demonstrated that patients' self‐reported fatigue provides independent prognostic information for OS in newly diagnosed patients with advanced MDS . These data have laid the groundwork for further investigation regarding how the inclusion of self‐reported fatigue could be implemented into already existing prognostic models to possibly improve survival prediction . Within the last decade, there has been mounting evidence that patient‐reported outcomes (PROs), including self‐reported symptoms, provide prognostic information for survival above and beyond traditional disease factors .…”

“…6 These data have laid the groundwork for further investigation regarding how the inclusion of self-reported fatigue could be implemented into already existing prognostic models to possibly improve survival prediction. 7 Within the last decade, there has been mounting evidence that patient-reported outcomes (PROs), including self-reported symptoms, provide prognostic information for survival above and beyond traditional disease factors. [8][9][10][11][12][13] However, to the best of our knowledge, studies in this area have been confined to descriptive data analysis and the clinical implication of this evidence has been challenged.…”

Latest Insights and Therapeutic Advances in Myelodysplastic Neoplasms

“…In addition, and as above outlined, patient-reported fatigue is a major subjective complaint reported by individuals with newly diagnosed MDS [13]. Moreover, in HR-MDS, the severity of this symptom at diagnostic workup was clinically meaningful and provided prognostic value [58][59][60]. On this basis, a novel patient-centred prognostic index that includes patients' self-reported fatigue severity, such as the fatigue IPSS high risk (FA-IPSS(h)), was proposed by the authors, claiming that it might enhance a physician's ability to predict overall survival (OS) more accurately in patients with advanced MDS [58].…”

Chronic myeloproliferative disorders: is quality-of-life the new goal?

“…From this perspective, the role of the patient is becoming increasingly relevant, and the patient's reported outcome assessment (PRO) is rapidly changing clinical and research practice in the setting of hematologic neoplasms. For example, the use of self-reported QoL in patients with Myelodysplastic Syndromes (MDS) has improved prognostic accuracy and the development of new prognostic models 21 , with significant advances in the clinical daily MDS management 22 . The contribution of PRO in the treatment of MF has been critical in determining the most effective strategies for these patients, and this area of research now represents a focus of active investigations.…”