Capturing the burden of fatigue experienced by newly diagnosed patients with myelodysplastic syndromes
Sir William Osler, one of the father of modern medicine, once said: ”listen to your patient, he is telling you the diagnosis”, this sentence beautifully emphasizes the key role that patient-reported health status information could play in medical care.
Indeed, fatigue or other symptoms, are best known by patients themselves. Despite fatigue has been extensively studied in solid tumor patients, very little evidence-based data exist for patients with myelodysplastic syndromes (MDS). Therefore, the purpose of our study was to generate novel information to better understand the burden of fatigue experienced by newly diagnosed MDS patients and, we observed that their burden of fatigue is indeed clinically meaningful worse than that of their peers from the general population.
Also, treatment decisions in MDS is particularly challenging for several reasons including, for example, the large variability of disease course and the associated comorbidity due to the older age of the majority of patients. That’s why, at diagnostic workup, physicians use risk-classifications that are meant to stratify patients and guide treatment decisions. The two most widely used classifications in clinical practice are the International Prognostic Scoring Systems (IPSS) and the IPSS-Revised (IPSS-R). Both systems are based on key disease related characteristics, including peripheral cytopenias, bone marrow findings and karyotype.
One of the main questions of our study was: do they provide the same level of accuracy in discriminating the burden of fatigue, as experienced by patients themselves? With our surprise we observed that the IPSS, which has been extensively used for several years in patients with MDS is not very accurate in stratifying patients based on their fatigue severity. On the contrary, we found that the IPSS-R was a more powerful tool in discriminating newly diagnosed MDS patients based on their actual burden of fatigue. Therefore, we hope that our findings of the better performance of the IPSS-R, could further contribute to improve patient’s management in this challenging clinical setting.
This study was led by the Italian Group for Adult Haematologic Diseases (GIMEMA), which has historically placed great emphasis in better understanding the impact of the disease and treatment effects on patients’ quality of life. But of course, this is the result of a very fruitful collaboration with outstanding dedicated researchers across many centers and countries. Their continued motivation and enthusiasm over the years was critical for the success of this study. Finally, we note that this work came to fruition not only through a major collaborative effort with excellent “scientists”, but also thanks to generosity of MDS patients who agreed to take part in this study.