Simone Oerlemans, PhD
Since 2009, I am working as a researcher at the Netherlands Comprehensive Cancer Organization in Eindhoven and at the Center of Research on Psychology in Somatic diseases (CoRPS) at Tilburg University. My research primarily focuses on health-related quality of life, fatigue and satisfaction with information among survivors of lymphoma and multiple myeloma (MM).
In the past years we performed a large longitudinal observational study in the south of the Netherlands. The results of this study show that a substantial part of lymphoma and MM survivors perform well, but a significant number of survivors experience a lower quality of life and physical, mental and/or social problems. Problems which may persist long after the completion of primary treatment. In addition, approximately half of the patients treated for lymphoma (Hodgkin's and non-Hodgkin lymphoma) suffer from persistent fatigue. Furthermore, about one third of patients was dissatisfied with the amount of information received about their hematological malignancy. At least a quarter of survivors wanted more information about the cause and course of the disease, late effects of treatment and opportunities for psychosocial aftercare.
Awareness and recognition of the specific health problems that lymphoma patients are facing is important to provide optimal (supportive) care. To further improve care for lymphoma patients and survivors, we are developing an Internet-based self-management intervention to better inform patients about their disease and potential late effects and provide opportunities for psychosocial aftercare. In order to facilitate adjustment for patients with lymphoma after primary treatment the aim of the intervention is decreasing psychological distress and increasing self-efficacy. To study if patients will benefit from this intervention we will perform a randomized clinical trial that will start in 2015.