Long-term effects and psychological adjustment: study protocol of a large register-based study on quality of life among survivors of hematological malignancies

Peter Esser, Katharina Kuba, Heide Götze, Anja Mehnert

Both incidence and survival rates of hematological cancers are increasing, leading to a growing number of survivors with specific late and long-term effects. However, relevant research in physical, psychological and social aspects of quality of life is scarce. Existing literature shows that a considerable number of cancer survivors report a relatively high quality of life despite a variety of adverse and persistent symptoms. To date, the reasons for this phenomenon as well as moderating and mediating factors are widely unknown. Given these research gaps, we aim to investigate the different domains of quality of life among long-term survivors of hematological cancers and to identify factors predicting high quality of life. This is a large cross-sectional study among hematological cancer survivors at a minimum of 3 years after diagnosis. We will collect 1000 survivors completing a set of self-report-questionnaires encompassing physical, psychological and social domains of quality of life. Participants are clustered in groups according to time since diagnosis and compared with each other. Furthermore, survivors will be compared with the general population. Factors predicting high quality of life will be identified via multiple regression analyses and structure equation modeling. Our study will help to inform health care providers about the specific long-term burden among survivors with hematological malignancies. Identification of factors predicting high quality of life will help to develop adequate intervention strategies to enhance well-being in hematological cancer survivors. Our methodological advantages including the large sample as well as the assessment of different domains of quality of life will ensure novel and robust results. A limitation of the study is the cross-sectional design.