Eveline Bleiker has a background in medical psychology. With her studies, she aims to improve the quality of life and quality of care of those diagnosed with cancer and those with a high risk to develop cancer because of a strong family history or a gene mutation. During the past years, her research program has focused on the psychosocial aspects of genetic counseling and testing in cancer. More recently, a second line of research was added, in which her group aims to evaluate psychosocial interventions to improve supportive care.
Dr. Bleiker is supervising a number of studies related to clinical genetics for cancer. Her research program has focused on three major topics: 1) the uptake of genetic testing for cancer syndromes, 2) the psychosocial impact of genetic counseling and testing in cancer, also including experiences with cancer risk-reducing behavior, and 3) the organization of the psychosocial healthcare for cancer patients and their high risk relatives ('personalized psychosocial care').
We studied, for example, the uptake of pre-symptomatic testing in families with Li-Fraumeni Syndrome (LFS). Although preventive and treatment options for LFS are limited, we found that more than half of the family members from known LFS families choose to undergo pre-symptomatic testing. Of the total group, 23% reported clinically relevant levels of LFS-related distress. Carriers were not significantly more distressed than non-carriers or than those with a 50% risk who did not undergo genetic testing. However, those with a lack of social support were more prone to report clinically relevant levels of distress. Currently, we are organizing a nationwide TP53 registry and surveillance program at the Netherlands Cancer Institute in Amsterdam. The registry will form a perfect basis for further long-term and international research. We are investigating the uptake of, the diagnostic value of, and the experience with, a whole body MRI-surveillance program for patients with Li-Fraumeni Syndrome.
With regard of the impact of genetic testing on psychological wellbeing, our studies showed that approximately 20% of those counseled for hereditary forms of cancer, irrespective of their carrier status, exhibit clinically relevant levels of distress which potentially warrant psychological support. Furthermore, we found that only one-third of these distressed individuals received psychosocial support; that psychosocial variables, such as risk perception, family functioning, and knowledge about cancer, explain significantly more of the variability in distress levels than do sociodemographic and clinical variables; that partners suffer from at least as much distress as patients, and that in hereditary colorectal cancer, about 20% of the at-risk group is less than fully compliant with surveillance advice. These results have been used in guidelines to improve that care for this high risk group.
With the strong increase in the number of cancer patients and cancer survivors, the need for studies leading to effective supportive care is pressing. Studies in supportive care aim to support communication with patients about their disease and prognosis, to ease emotional burden of patients and care givers, and to promote secondary cancer prevention and survivorship care. An important aspect of the work of the group op Bleiker is to evaluate and promote the care provided to patients and their relatives. For example, within the family cancer clinic, Bleiker et al. developed and tested a questionnaire, which aimed to improve the communication about specific problems experienced during the time of genetic counseling and testing. We found that the new tool (the PAHC questionnaire) was effective in facilitating communication about the specific psychosocial problems, and in reducing distress and cancer worries on the short term. A second example is a study in which we aimed to investigate the psychological, psychosexual and motivational experiences with breast and nipple reconstruction of women undergoing direct breast reconstruction after mastectomy. We found that, on average, the appreciation of cosmetic qualities and quality of life-issues were high. However, a substantial group of women indicated to have missed visual information on the various reconstructive options and psychosocial support. Therefore in 2015, a multicenter randomized trial will start to improve (psycho-) education and balanced decision making for this group of patients. In 2016 a newCenter for RehabilitationandSurvivorship Carewill open its doors at the Netherlands Cancer Institute. As a preparation, the group of Bleiker is currently evaluating the current offer of supportive care in this hospital offered by the social workers and the art therapists. A study to investigate a newly developed 'patient navigation program' is planned. Furthermore, a grant proposal is submitted, in which we aim to investigate the effect of a promising intervention to decrease one of the most burdensome complaints after cancer treatment: cancer related fatigue. In this study, we will assess whether exposure to bright white light in cancer survivors suffering from fatigue will result in a significantly reduction in cancer related fatigue.