Disease Perception Is Correlated with Health-Related Quality of Life in Patients Suffering from Myelodysplastic Syndromes: Results of the Belgian Be-QUALMS Study

Abstract

Patients 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).

Illness Perceptions and Illness Outcomes in Patients with Hematologic Diseases: A Narrative Review

“…Table 1 provides an overview of key study characteristics. As can be seen, studies included were conducted in various geographical regions, namely the USA (three studies) (Westbrook et al, 2016;Nelson et al, 2019;Arrato et al, 2022), Israel (one study) (Segal et al, 2021), Austria (one study) (Porkert et al, 2018), Portugal (one study) (Pinto et al, 2018), the Netherlands (one study) (Schoormans et al, 2020) and Belgium (one study) (Heyrman et al, 2023). Regarding the year of publication, one study was published in 2016 (Westbrook et al, 2016), two in 2018 (Pinto et al, 2018;Porkert et al, 2018), one in 2019 (Nelson et al, 2019), one in 2020 (Schoormans et al, 2020), one in 2021 (Segal et al, 2021), one in 2022 (Arrato et al, 2022) and one in 2023 (Heyrman et al, 2023).…”

“…As can be seen, studies included were conducted in various geographical regions, namely the USA (three studies) (Westbrook et al, 2016;Nelson et al, 2019;Arrato et al, 2022), Israel (one study) (Segal et al, 2021), Austria (one study) (Porkert et al, 2018), Portugal (one study) (Pinto et al, 2018), the Netherlands (one study) (Schoormans et al, 2020) and Belgium (one study) (Heyrman et al, 2023). Regarding the year of publication, one study was published in 2016 (Westbrook et al, 2016), two in 2018 (Pinto et al, 2018;Porkert et al, 2018), one in 2019 (Nelson et al, 2019), one in 2020 (Schoormans et al, 2020), one in 2021 (Segal et al, 2021), one in 2022 (Arrato et al, 2022) and one in 2023 (Heyrman et al, 2023). Those articles differed in terms of the type of the disorder: one study recruited patients with non-malignant hematologic disorders (hemophilia) (Pinto et al, 2018); five studies included patients with malignant hematologic disorders, namely chronic lymphocytic leukemia (two studies) (Westbrook et al, 2016;Arrato et al, 2022), cutaneous lymphomas (two studies) (Porkert et al, 2018;Segal et al, 2021); myelodysplastic syndromes (one study) (Heyrman et al, 2023), while patients in two studies had various hematologic malignancies (Nelson et al, 2019;Schoormans et al, 2020).…”

“…Regarding the year of publication, one study was published in 2016 (Westbrook et al, 2016), two in 2018 (Pinto et al, 2018;Porkert et al, 2018), one in 2019 (Nelson et al, 2019), one in 2020 (Schoormans et al, 2020), one in 2021 (Segal et al, 2021), one in 2022 (Arrato et al, 2022) and one in 2023 (Heyrman et al, 2023). Those articles differed in terms of the type of the disorder: one study recruited patients with non-malignant hematologic disorders (hemophilia) (Pinto et al, 2018); five studies included patients with malignant hematologic disorders, namely chronic lymphocytic leukemia (two studies) (Westbrook et al, 2016;Arrato et al, 2022), cutaneous lymphomas (two studies) (Porkert et al, 2018;Segal et al, 2021); myelodysplastic syndromes (one study) (Heyrman et al, 2023), while patients in two studies had various hematologic malignancies (Nelson et al, 2019;Schoormans et al, 2020). Sample sizes varied, ranging from 30 to 993 participants.…”

“…Gender distribution differed among studies, with one study including exclusively male participants (Pinto et al, 2018). Study designs also varied, including a randomized trial (Arrato et al, 2022), a prospective, longitudinal design (Nelson et al, 2019), a population-based registry study (Schoormans et al, 2020), a prospective observational study (Heyrman et al, 2023), while the remaining four were cross-sectional (Westbrook et al, 2016;Pinto et al, 2018;Porkert et al, 2018;Segal et al, 2021). To assess illness perceptions, four studies used the IPQ-R (Pinto et al, 2018;Porkert et al, 2018;Nelson et al, 2019;Segal et al, 2021) and four studies employed the B-IPQ (Westbrook et al, 2016;Schoormans et al, 2020;Arrato et al, 2022;Heyrman et al, 2023).…”

“…Study designs also varied, including a randomized trial (Arrato et al, 2022), a prospective, longitudinal design (Nelson et al, 2019), a population-based registry study (Schoormans et al, 2020), a prospective observational study (Heyrman et al, 2023), while the remaining four were cross-sectional (Westbrook et al, 2016;Pinto et al, 2018;Porkert et al, 2018;Segal et al, 2021). To assess illness perceptions, four studies used the IPQ-R (Pinto et al, 2018;Porkert et al, 2018;Nelson et al, 2019;Segal et al, 2021) and four studies employed the B-IPQ (Westbrook et al, 2016;Schoormans et al, 2020;Arrato et al, 2022;Heyrman et al, 2023). Illness outcomes differed between articles, including HRQoL (Segal et al, 2021;Heyrman et al, 2023), psychological variables (Westbrook et al, 2016;Pinto et al, 2018;Nelson et al, 2019;Segal et al, 2021;Arrato et al, 2022) and fatigue (Westbrook et al, 2016;Schoormans et al, 2020).…”