Search PubMed⌕ Search

Biomedical subjects

G Evers-Kiebooms

Publications and source records attributed to G Evers-Kiebooms.

At least 19 recordsLinked to original sources
PubMed2005

Predictive genetic testing for hereditary breast and ovarian cancer: psychological distress and illness representations 1 year following disclosure.

This prospective study evaluates emotional functioning and illness representations in 68 unaffected women (34 carriers/34 noncarriers) 1 year after predictive testing for BRCA1/2 mutations when offered within a multidisciplinary approach. Carriers had higher subjective risk perception of breast cancer than noncarriers. Carriers who did not have prophylactic oophorectomy had the highest risk perception of ovarian cancer. No differences were found between carriers and noncarriers regarding perceived seriousness and perceived control of breast and ovarian cancer. Mean levels of distress were within normal ranges. Only few women showed an overall pattern of clinically elevated distress. Cancer-specific distress and state-anxiety significantly decreased in noncarriers from pre- to posttest while general distress remained about the same. There were no significant changes in distress in the group of carriers except for ovarian cancer distress which significantly decreased from pre- to posttest. Our study did not reveal adverse effects of predictive testing when offered in the context of a multidisciplinary approach.

Adaptation, Psychological↗
PubMed2004

Predictive testing for Huntington's disease: relationship with partners after testing.

This study focuses on the partner relationship of tested persons, 5 years after their predictive test result for Huntington's disease (HD). We describe changes in marital status, quality of the relationship, and perceived changes in the relationship. Twenty-six carriers, 14 of their partners, 33 non-carriers, and 17 of their partners participated in the study. Qualitative and quantitative methods were used. For the majority of tested persons (about 70%), the marital status was unchanged 5 years post test. Overall, carriers rated the quality of the relationship higher than their partners did and they perceived more positive changes. Qualitative data show that a test result leading to changed roles may induce significant marital distress. Another consequence of the test may be the changes in dynamics in asymptomatic carrier couples. A pre-test discussion of the possible impact of the test result on the relationship should result in a better preparation for and more understanding of the reactions after testing. Counselling after testing should stimulate an open communication between partners with consideration of needs and anxieties of both partners.

Adult↗
PubMed2003

Cancer genetics service provision: a comparison of seven European centres.

OBJECTIVE: To conduct a survey in seven European cancer genetics centres to compare service provision, organisation and practices for familial breast and colon cancer consultations and testing. Information was obtained on aspects of services both nationally and locally. METHODS: A detailed survey questionnaire was adapted collaboratively to obtain the required information. Initial survey data were collected within each centre and interim results were discussed at two European Workshops. Where differences in practice existed, details were clarified to ensure accuracy and adequacy of information. Participating centres were Haifa (Israel), Hannover (Germany), Leiden (The Netherlands), Leuven (Belgium), Manchester (UK), Marseille (France) and Milan (Italy), representing countries with populations ranging from 6.5 to 80 million. RESULTS: The European countries diverged in regard to the number of cancer genetics centres nationally (from 8 in Belgium to 37 in France), and the average population served by each centre (from 0.59 million in Israel to 3.32 million in Italy). All centres offered free care at the point of access, but referral to specialist care varied according to national health care provision. At a centre level, staff roles varied due to differences in training and health care provision. The annual number of counsellees seen in each participating centre ranged from 200 to over 1,700. Access to breast surveillance or bowel screening varied between countries, again reflecting differences in medical care pathways. These countries converged in regard to the wide availability of professional bodies and published guidelines promoting aspects of service provision. Similarities between centres included provision of a multidisciplinary team, with access to psychological support, albeit with varying degrees of integration. All services were dominated (70-90%) by referrals from families with an increased risk of breast cancer despite wide variation in referral patterns. Collection of pedigree data and risk assessment strategies were broadly similar, and centres used comparable genetic testing protocols. Average consultation times ranged between 45 and 90 min. All centres had access to a laboratory offering DNA testing for breast and bowel cancer-predisposing genes, although testing rates varied, reflecting the stage of service development and the type of population. Israel offered the highest number of genetic tests for breast cancer susceptibility because of the existence of specific founder mutations, in part explaining why the cancer genetics service in Haifa differed most from the other six. CONCLUSION: Despite considerable differences in service organisation, there were broad similarities in the provision of cancer genetic services in the centres surveyed.

Breast Neoplasms↗
PubMed2002

Longitudinal study evaluating neuropsychological changes in so-called asymptomatic carriers of the Huntington's disease mutation after 1 year.

OBJECTIVES: To determine (1) whether the battery of neuropsychological tests was sufficiently sensitive to find differences between symptomatic patients with Huntington's disease (HD) and clinically asymptomatic individuals carrying the HD gene (AGC) and individuals without the HD gene (NGC) and (2) whether increasing cognitive impairment is found in AGC as compared with NGC. METHODS: A case-control, single-blind study comparing subjects with clinically manifest HD (n=21), AGC (n=12) or NGC (n=11) and a 1-year follow-up of AGC and NGC. Genotype for the HD gene was determined by molecular testing. A large battery of neuropsychological tests measuring several cognitive domains was performed. RESULTS: On most neuropsychological tasks, HD patients perform significantly worse than AGC and NGC. At baseline and follow-up examination, compared with NGC, AGC had lower scores on the symbol digit modalities test. Scores on a block span task declined more rapidly among AGC than among NGC. CONCLUSION: Cognitive impairments in HD patients are found when compared with clinically asymptomatic individuals carrying the HD mutation. Furthermore, our results suggest that subtle cognitive deficits are present in asymptomatic persons who have inherited the HD gene.

Adult↗
PubMed2002

General practitioners and predictive genetic testing for late-onset diseases in Flanders: what are their opinions and do they want to be involved?

OBJECTIVE: Investigate the attitudes of general practitioners (GPs) concerning predictive testing for late-onset diseases, as well as the perception of their own role in this context. METHODS: 356 GPs received mail questionnaires with telephone pre-notifications and reminders. RESULTS: The questionnaire was returned by 60% (n=215). The GPs' attitudes toward predictive testing for breast cancer, thyroid cancer, Alzheimer disease and Huntington's disease were influenced by the availability and the type of preventive and therapeutic options, the age of onset of the disease as well as by ethical concerns. Regarding a possible tasks for GPs, most of the GPs focussed on gate-keeping aspects, such as providing information and making referrals. CONCLUSION: The GPs were supportive of a limited role for general practice in predictive testing. Genetic education for GPs is needed, with attention to non-directiveness and the characteristic psychosocial and ethical implications of this particular type of genetic testing.

Adolescent↗
PubMed2001

The language of uncertainty in genetic risk communication: framing and verbal versus numerical information.

Within a group of 300 medical students, two characteristics of risk communication in the context of a decision regarding prenatal diagnosis for cystic fibrosis are manipulated: verbal versus numerical probabilities and the negative versus positive framing of the problem (having a child with versus without cystic fibrosis). Independently of the manipulations, most students were in favor of prenatal diagnosis. The effect of framing was only significant in the conditions with verbal information: negative framing produced a stronger choice in favor of prenatal diagnosis than positive framing. The framing effect in the verbal conditions and its absence in the numerical conditions are explained by the dominance of the problem-occurrence orientation in health matters as well as a recoding process which is more likely to occur in the numerical (the probability "1-P" switches to its counterpart "P") than in the verbal conditions. The implications for the practice of genetic counseling are discussed.

Adult↗
PubMed2000

The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: implications for multidisciplinary counselling and for genetic education.

Increasing knowledge about the human genome has resulted in the availability of a steadily increasing number of predictive DNA-tests for two major categories of diseases: neurogenetic diseases and hereditary cancers. The psychological complexity of predictive testing for these late onset diseases requires careful consideration. It is the main aim of the present paper to describe this psychological complexity, which necessitates an adequate and systematic multidisciplinary approach, including psychological counselling, as well as ongoing education of professionals and of the general public. Predictive testing for neurogenetic diseases--in an adequate counselling context--so far elicits optimism regarding the short- and mid-term impact of the predictive test result. The psychosocial impact has been most widely studied for Huntington's disease. Longitudinal studies are of the utmost importance in evaluating the long-term impact of predictive testing for neurogenetic diseases on the tested person and his/her family. Given the more recent experience with predictive DNA-testing for hereditary cancers, fewer published scientific data are available. Longitudinal research on the mid- and long-term psychological impact of the predictive test result is essential. Decision making regarding health surveillance or preventive surgery after being detected as a carrier of one of the relevant mutations should receive special attention. Tailoring the professional approach--inside and outside genetic centres--to the families' needs is a continuous challenge. Even if a continuous effort is made, several important questions remain unanswered, last but not least the question regarding the best strategy to guarantee that the availability of predictive genetic testing results in a reduction of suffering caused by genetic disease and in an improvement of the quality of life of families confronted with genetic disease.

Counseling↗
PubMed2000

Predictive testing for hereditary breast and ovarian cancer: a psychological framework for pre-test counselling.

Since the identification of two breast-ovarian cancer susceptibility genes (BRCA1/2), predictive testing for hereditary breast/ovarian cancer (HBOC) has been available. Given the complexity and uncertainties of HBOC and the potential impact of predictive testing on psychological well-being, we offer the test applicants a combination of information-oriented and psychological counselling. In this paper, we describe the multidisciplinary approach for predictive testing for HBOC as a clinical service in Leuven, hereby focusing on psychological and decision counselling practice. Attention is paid to the theoretical framework used for pre-test psychological counselling in Leuven. We discuss three important interacting dimensions of psychological counselling: individual emotional support, decision counselling and support of the family communication process. Decision counselling consists of an evaluation of the cognitive and the emotional processing of the information given and strategies and resources for coping. This serves as a starting point to facilitate free informed decision making. Scenario development is used as a decision aid.

Belgium↗
PubMed1999

Psychological functioning before predictive testing for Huntington's disease: the role of the parental disease, risk perception, and subjective proximity of the disease.

BACKGROUND: Psychometric testing of participants in predictive DNA testing for Huntington's disease (HD) has shown that 15% of the subjects at risk for HD had at least mild depression or a high score for general anxiety or both in the pre-test period. The main aim of the study was the delineation of variables associated with pre-test distress of applicants for predictive testing for HD. Based on theoretical considerations, four specific hypotheses were tested regarding the role of (1) the test participant's age at the (perceived) parental onset of HD, (2) the affected parent's sex, (3) the perception of the risk for HD, and (4) the subjective proximity of the disease. Secondly, these four variables were used in multiple regression analyses to select the best predictors of pre- and post-test psychological functioning (one year after the test). Increasing the understanding of pre- and post-test distress is important for developing better counselling and support strategies for test applicants. METHODS: Data were collected by means of clinical interviews and psychometric questionnaires during the pre- and post-test (one year after the test) counselling sessions for predictive testing for HD. RESULTS: We found significant associations of the participant's age at the parental onset, the subjective proximity of the disease onset, and the perceived risk with pre-test psychometric measures of psychological functioning. Multiple regression analyses showed that the best predictors of pre-test functioning were the perceived proximity of the disease onset and its interaction with risk perception. Regarding post-test functioning, none of the proposed variables had a unique contribution beyond that accounted for by pre-test psychological functioning. CONCLUSIONS: Test participants who are close to the perceived age of onset of HD and who have a pessimistic risk perception should be given special attention during pre-test counselling because of their possible negative affective condition at that time. Pre-test psychological measures were the best predictors of post-test distress, irrespective of the test result. Suggestions for future longitudinal research are formulated. This kind of research should enable clinical geneticists and mental health professionals to refine the pre- and post-test counselling strategies for predictive DNA testing, not only for HD, but also for other incurable late onset disorders.

Adult↗
PubMed1998

Non-disclosure preimplantation genetic diagnosis for Huntington's disease: practical and ethical dilemmas.

Prenatal diagnosis of Huntington's Disease (HD) is controversial. Selective abortion is considered unacceptable by some, since, being a late-onset disorder, any child born carrying the HD mutation might still expect many years of disease-free life. The test result itself has implications for the parents and other members of the family who may have decided not to be tested but who know that they may be at risk because a family member is affected. For this reason some potential carriers do not want to know their carrier status and may prefer prenatal exclusion testing. However, since half the fetuses carrying the affected grandparental allele may be normal, aborting these fetuses is also controversial. Preimplantation genetic diagnosis (PGD) has been suggested as an alternative by which asymptomatic individuals who are at high risk of carrying HD can avail themselves of antenatal genetic testing without incurring the emotional, social and financial burdens that might result from the presymptomatic disclosure of their own carrier status. However, non-disclosure testing of embryos in vitro presents specific practical difficulties. Assurance of absolute secrecy is difficult in the large team required for in vitro fertilization biopsy and diagnosis, and changes in practice which may be required to maintain the deception may be unethical.

Confidentiality↗
PubMed1998

Predictive testing for Huntington's disease: a challenge for persons at risk and for professionals.

About a decade ago the introduction of predictive testing for Huntington's disease (HD) was an important milestone in medical history. The aim of the present paper concerning predictive DNA-testing for HD is fourfold. First of all it describes the professional challenge of elaborating an adequate test protocol and of permanently using a multidisciplinary approach to deal with predictive test requests. Secondly the paper is aimed at unraveling the factors that play a part in uptake and decision making regarding predictive testing. Hereby the Health Belief Model is used as a framework for understanding differences between tested and untested persons. Thirdly the impact of the test result on psychological well-being is reviewed. Finally this paper assesses the utilisation of prenatal diagnosis after predictive testing for HD and reflects on the psychological and ethical implications of different types of prenatal tests, including preimplantation genetic diagnosis.

Adult↗
PubMed1998

Uptake and impact of carrier testing for cystic fibrosis. A review and a theoretical framework about the role of knowledge, health beliefs and coping.

The first aim of the paper is to review research into the uptake of carrier testing for cystic fibrosis and into the impact of carrier testing on self-esteem, risk perception and reproductive decisions. The second aim is to connect the most important findings to psychological theories and concepts. Thirdly, we infer practical suggestions for genetic counselling. The uptake of genetic testing for CF could be explained by at least three (complementary) interrelated psychological concepts: the (lack of) genetic information, the individual's health beliefs and the concept of coping with a health threat. Cognitive and/or emotional coping mechanisms played also an important role in preserving self-esteem after a positive carrier test and in the subjective evaluation of the residual risk after a negative test result. Suggestions are given regarding genetic counselling in general and regarding free informed decision making.

Journal Article↗
PubMed1997

Risk perception after CF carrier testing and impact of the test result on reproductive decision making.

A correct interpretation of the result of a CF carrier test and a correct understanding of the risk of having a CF child is complicated by the limited sensitivity of the DNA test. The present paper addresses this problem, with special attention for the residual risk after a negative test result. Secondly, the impact of the test results on child bearing decisions is evaluated. Seventy percent of a sample of 200 subjects tested in the Center for Human Genetics in Leuven answered a mailed questionnaire and participated in an interview. Knowledge about the recessive transmission of CF was weak. In the case of both partners receiving a negative test result, more than half the subjects were not aware of the restrictions of DNA testing, and were convinced that there was no residual risk. Two thirds of the subjects from the 'carrier + negative test result couples' were aware of the residual risk of having a CF child. This risk did not hamper further reproduction. Carriers who were single or whose partner was not tested, had much difficulties to understand the risk. Although most of them had no idea about their exact risk level, it influenced their childbearing decisions to some extent. It was also shown that the own risk of having a CF child had an impact on attitudes toward reproduction in hypothetical situations with different risk levels.

Adolescent↗
PubMed1997

Attitudes toward predictive testing for Alzheimer's disease in a student population.

Attitudes toward predictive testing for Alzheimer's disease and knowledge about this disease were investigated in a group of medical and psychology students. Overall, knowledge was poor and their own chance of getting Alzheimer's disease was mostly perceived as small. About half the students thought the development of a predictive test for Alzheimer's disease important, while the other half held the opposite view. Considerable variability was also observed in the judgement of the (dis)advantages of such a test. Only a minority of the students would like to have a predictive test themselves. Important arguments against a predictive test concerned the absence of a treatment for Alzheimer's disease and the emotional burden of a positive test result. Arguments in favour dealt with the ability to make plans for the future and to prepare oneself for the disease. The divergence in attitudes and opinions reflects the complexity of predictive testing for Alzheimer's disease. Stepwise regression revealed that knowledge about Alzheimer's disease and, to a lesser extent, risk perception are significant predictors of attitudes toward predictive testing. However, they only explain a small part of the variance in attitudes. Moreover, why attitudes are less positive when knowledge and perceived susceptibility increase is not clear.

Adult↗