The role of psychosocial adjustment in the quality of life of patients with myeloproliferative neoplasms

Purpose: Myeloproliferative neoplasms (MPNs) can cause a high symptom burden that negatively affects quality of life (QoL). The way patients deal with their disease and how this impacts their QoL is important to understand, yet virtually unknown. The aim of this study is to investigate whether and how psychosocial adjustment affects QoL in MPN patients. Methods: A longitudinal study was conducted in 338 patients with MPN to investigate whether and how baseline measurements of psychosocial adjustment could predict QoL outcomes six months later. Psychosocial adjustment to illness was operationalized by: coping, self-management, resilience and illness identity (II). We tested the hypotheses that high scores on respectively problem-solving coping, self-management, resilience, II-subscales acceptance and enrichment, and low scores on II-subscales rejection and engulfment are associated with high scores on QoL. We performed a multiple hierarchical regression analysis including sociodemographic and disease-related variables and baseline QoL as control variables. Results: II-subscale engulfment had the most pronounced negative impact on QoL (β.47, p < .001). After the introduction of the control variables, the effect of engulfment remained statistically significant (β.16, p < .01). Additionally, baseline QoL (β.32, p < .001), treatment option wait-and-see (β.11, p < .05), and MPN symptom burden at T2 (β.36, p < .001) demonstrated significance. The other variables measuring psychosocial adjustment did not relate significantly to QoL. Conclusion: The findings of this study illustrate the significant adverse effect of engulfment on patients' QoL, underscoring the importance of providing psychosocial guidance to mitigate the patients' feelings of being overwhelmed by the disease.