Simple SummaryMyelodysplastic syndromes are a heterogenous group of bone-marrow cancers that prelude a possible evolution to acute myeloid leukemia. Most treatments aim at reinstalling bone marrow function and delay evolution to acute leukemia. The disease has a negative impact on health-related quality of life and amelioration is an independent treatment goal. In order to capture the impact of current treatments outside clinical trials we aimed to monitor quality of life during the course of treatment. Another key element in our study was to prospectively assess disease perception and the impact on quality of life. Not reaching our inclusion goal, we cannot make any conclusions or assumptions on our first objective. We can, however, demonstrate a clear significant relation between disease perception and health related quality of life in this patient population that may lead to a positive impact for future patients.AbstractPatients with myelodysplastic syndromes suffer from an impaired quality of life that is only partially explained by physical symptoms. In an observational study, we aimed to investigate the impact of current MDS treatments and the influence of disease perception on quality of life. Serial measurement of health-related quality of life was performed by ‘the QUALMS’, a validated MDS-specific patient reported outcome tool. Disease perception was evaluated by means of the Brief Illness Perception Questionnaire (B-IPQ). We prospectively collected data on 75 patients that started on a new treatment and could not demonstrate a significant change in QUALMS score or B-IPQ score during treatment. Six out of eight items evaluated in the B-IPQ correlated significantly with QUALMS score. In this small sample, no significant difference in QUALMS score was found between lower vs. higher risk MDS patients or other studied variables, e.g., targeted hemoglobin showed no correlation with QUALMS score. In daily practice attention must be paid to initial formation of disease perception as it correlates independently with health-related quality of life and does not change during treatment (clinicaltrials.gov identifier: NCT04053933).