Patient‐reported fatigue refines prognosis in higher‐risk myelodysplastic syndromes (MDS): a MDS‐CAN study

Abstract

The incorporation of patient-reported outcomes with traditional disease risk classification was found to strengthen survival prediction in patients with myelodysplastic syndromes (MDS). In the present Canadian MDS registry analysis, we validate a recently reported prognostic model, the Fatigue-International Prognostic Scoring System among higher-risk patients [FA-IPSS(h)], which incorporates patients' reported fatigue, assessed by the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life-Core 30 (QLQ-C30), with a threshold of ≥45 points, in higher IPSS score, stratifying them into distinct subgroups with different survival outcomes. We further validated this concept, using the Revised IPSS >3Á5 as cut-off for the definition of higher-risk MDS, and patients' reported fatigue according to Edmonton Symptom Self-Assessment Scale (ESAS) Global Fatigue Scale (GFS), a single-item fatigue rating scale, which is easier to deploy. This emphasises the power of self-reported fatigue at refining overall survival predictions in higher-risk MDS and further bolsters the importance of considering patient-related outcomes in global assessments.

Association of IMWG frailty score with health-related quality of life profile of patients with relapsed refractory multiple myeloma in Italy and the UK: a GIMEMA, multicentre, cross-sectional study

“…This finding has been replicated across several cancer populations with both solid and haematological malignancies, 27,28 and patient-reported outcome data have also been successfully integrated into established diseaserisk classifications to improve their accuracy in predicting survival. 29,30 Therefore, an important question to be elucidated in further analyses is whether our baseline patient-reported outcome data could provide independent prognostic information for survival outcomes. Such evidence would lay the groundwork for the development of a patient-centric relapsed or refractory multiple myeloma frailty index, by integrating (or even replacing) individual components of the IMWG frailty score algorithm with patient-reported outcome information.…”

The prognostic value of patient-reported outcomes in allogeneic hematopoietic stem cell transplantation: exploratory analysis of a randomized nutrition intervention trial

“…Moreover, Palmer et al found that changes in PROs predicted survival in patients with chronic GVHD [13]. Some studies have also shown that inclusion of PROs (i.e., fatigue) in well-established risk score classifications may improve their prognostic accuracy, as was the case for patients with myelodysplastic syndromes [14,15].…”

Raising the standards of patient‐centered outcomes research in myelodysplastic syndromes: Clinical utility and validation of the subscales of the QUALMS from the MDS‐RIGHT project

“… 13 Fatigue, as reported by patients themselves, has also been successfully incorporated into well‐established disease risk classifications to enhance their prognostic accuracy in higher‐risk MDS patients. 14 , 15 , 16 …”

“…13 Fatigue, as reported by patients themselves, has also been successfully incorporated into well-established disease risk classifications to enhance their prognostic accuracy in higher-risk MDS patients. [14][15][16] To date, HRQoL in MDS research has been frequently assessed with non-MDS-specific measures, 17 possibly limiting our understanding of the full breadth of problems experienced by these patients. Disease-specific measures are more likely to capture key elements of HRQoL most relevant to the population being studied.…”

“…Recent studies showed that MDS has an anemia‐independent impact on HRQoL, 12 and some have explicitly reported a weak association between fatigue and anemia 13 . Fatigue, as reported by patients themselves, has also been successfully incorporated into well‐established disease risk classifications to enhance their prognostic accuracy in higher‐risk MDS patients 14–16 …”