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Psychosocial Research and Epidemiology: Eveline Bleiker

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Eveline Bleiker, Ph.D.Group leader

About Eveline Bleiker

Research interest: Psychosocial Oncology in Clinical Genetics and Supportive Care

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. 

Psychosocial Oncology in Clinical Genetics

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.

Psychosocial Oncology in Supportive Care

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.

Co-workers

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Marianne Kuenen

Research Assistant

Experience

I graduated as a Dietitian at the Academy Dietetiek inNijmegen. After nine years of clinical experience I had the opportunity to work as a Research Assistant at the Division of Psychosocial Research and Epidemiology where I followed several courses.

My current work consists of conducting neuropsychological tests and collecting and management of data.

I am involved in some Scientific studies like: P09PCI study, HOVON105, M12PHA study, Skinlast study, TIME-trial and scientific research on cognitive function after treatment of cancer.

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Dr. Jacobien Kieffer

Statistical analyst

Experience

My background is in psychological research methods, which I studied at the University of Amsterdam. I obtained my PhD from the Academic Centre of Dentistry (ACTA). My thesis was on methodological issues in oral health-related quality of life research. Throughout my career, I have always had a teacher and/ or advisory role. Therein also lies my interest in my current position as senior statistical analyst. It provides me with the opportunity to be involved in a range of projects and to work collaboratively with colleagues with varying backgrounds and levels of expertise.

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Saskia Duijts

Senior postdoctoral fellow

Experience

I am a senior researcher and a fellow of the Dutch Cancer   Society, and my research area concerns 'cancer and work'. I am supervising   several PhD students and junior researchers regarding this topic. My PhD   thesis was in the area of occupational health epidemiology (Maastricht   University, 2007), after which I started as a postdoc in cancer epidemiology   / psycho oncology at the Netherlands cancer Institute. Since 2010, I am   combining these subjects, till 2013 at the VU University Medical Center, and   for several years already both at the VUmc and the NKI.

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Starreveld, Daniëlle

Starreveld, Danielle

PhD-student

Experience

My first contact with patients treated for cancer was during my work as a radiation therapist (LUMC) from 2007 till 2011. Motivated by the contact with these patients and the desire to improve their quality of life, I started to study psychology (Maastricht University). In 2016, I completed a research internship on chronic pain after breast surgery (NKI-AVL), and received my Master's degree.

Currently, I'm working on a PhD-project investigating the effectiveness and working mechanisms of bright white light therapy on cancer related fatigue, psychosocial functioning and sleep quality in survivors of (non-)Hodgkin lymphoma. 

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Bootsma, Tom

Tom Bootsma

Junior Researcher

Experience

In   2008 I graduated for my doctoral exam Medicine at Leiden University after I   had passed successfully two research internships. Since then, I have worked   in the field of cancer research. I have a wide range of experience with data-collection,   data cleaning and database-development.

In January 2016, I started as Junior Researcher with the   current project: "Being a man in a woman's world": Development of an online   information portal for Male Breast Cancer Patients, Health Care Professionals   and Researchers" at department of Psychosocial Research and Epidemiology and at   department of Surgical Oncology of UMC Utrecht Cancer Center.

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Berezowska, Aleksandra

Researcher

Experience

I have received my master's degree at the University of Twente, specialising in both Health Psychology and Consumer Behaviour Psychology. After being involved in a multidisciplinary project that studied the feasibility of personalised nutrition advice across the EU, I obtained my PhD degree from the Marketing and Consumer Behaviour group of the Wageningen University. My PhD-thesis focused on the role of the risk-benefit trade-off in consumer adoption of services that provide personalised nutrition advice. At the NKI I mainly study the effect of patient navigation on factors such as quality of life, satisfaction, and care consumption.

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Stege, Jacqueline ter

Jacqueline ter Stege

PhD Student

Experience

In October 2015, I started as a PhD student at the NKI on the TANGO project. In this project, we are developing an online decision aid to support women in making a well-informed decision about breast reconstruction. After development, we will evaluate its impact on the decision-making process in a multicenter randomized controlled trial. If proven beneficial, the tool will be implemented into clinical breast cancer care.

Before starting at the NKI, I received a master's degree in Clinical Neuropsychology at Leiden University and worked as a research assistant in medical psychological studies on HIV and chronic skin disorders.

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Recent publications View All Publications

  • 100 years Lynch Syndrome: What have we learned about psychosocial issues?

    (2013) Familial Cancer DOI: 10.1007/s10689-013-9653-8.

    Bleiker EMA, Esplen MJ, Meiser B, Petersen HV, Patenaude AF.

    Link to Pubmed
  • Li-Fraumeni syndrome: Report of a clinical research workshop and creation of a research consortium

    (2012) Cancer Genetics 205(10):479-487.

    Mai PL, Malkin, D, Garber J, Schiffman JD, Witzel JN, Strong L, Wyss O, Locke L, Means V, Achatz MI, Hainaut P, Frebourg T, Evans DG,...

    Link to Pubmed
 

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