Abstract
To characterize the economic and humanistic burden of patients with hematologic malignancies in Japan using real-world data. Patients with a claim record for a hematologic malignancy who responded to a survey regarding productivity loss and quality of life (QoL) were analyzed to assess their direct medical cost, productivity loss, and QoL along with their levels of comorbidity. This study identified a main cohort of 122 patients with a hematologic malignancy who responded to Work Productivity and Activity Impairment (WPAI) and EQ-5D-5 L questionnaires. Median patient age was 54.5 years (range 25–71 years), with median Charlson Comorbidity Score (CCI) of 2. Most of the mean total cost (USD 12,836.14; JPY 1,670,624) was attributed to productivity loss (mean USD 8,106.39; JPY 1,055,046) rather than direct medical cost (mean USD 4,729.76; JPY 615,578). Presenteeism (mean USD 5,117.84; JPY 666,086) accounted for a greater proportion of productivity loss than absenteeism (mean USD 2,988.55; JPY 388,960). Deterioration in QoL (-0.045) was observed in comparison to the general population in Japan. The results point to the need for a social security policy to provide appropriate support such as better therapies or access for patients who must receive treatment while still working.
Data availability
The datasets generated and/or analyzed during the present study are not publicly available because they were purchased from commercial providers (JMDC Inc.) but are available from the corresponding author upon reasonable request.
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Acknowledgements
This study is funded by Gilead Sciences Japan.
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ST conceived and designed this study. ST, KS, SL, RN, HN, HA, AM, TY analyzed the data and wrote the manuscript. ST, KS, SL, RN, HN, HA, AM, TY reviewed and approved the manuscript.
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AM and TY are employees of Gilead Sciences Japan. ST and HA area former employees of Gilead Sciences Japan. SL, RN, HN are employees of INTAGE Healthcare.KS received lecture fees from Takeda, ONO, Novartis, Sanofi, Bristol-Myers Squibb and Janssen outside of this work, has received advisory fees from SRL, and has held an endowed chair position with Janssen, Takeda, Pfizer and Bristol-Myers Squibb.
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The authors state that they have obtained appropriate institutional review board approval or have followed the principles outlined in the Declaration of Helsinki for all human or animal experimental investigations. All data are anonymized, so the Ethical Guidelines for Epidemiological Research in Japan are not applicable to this study. In addition, the Ethical Guidelines on Biomedical Research Involving Human Subjects ascertain that written informed consent from patients is not required for such pharmaco-epidemiological studies conducted using medical databases, as the use of pre-existing data does not require any interaction with patients. Due to the retrospective nature of the study, the Ethics Committee of the Medical Corporation TOUKEIKAI Kitamachi Clinic Ethical Review Board waived the need of obtaining informed consent.
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Tsutsué, S., Suzuki, K., Lim, S. et al. Unveiling economic and humanistic burden of hematologic malignancies in Japan with personal health record data. Sci Rep (2026). https://doi.org/10.1038/s41598-026-36287-7
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DOI: https://doi.org/10.1038/s41598-026-36287-7
