Biomedical subjects

Lidewij Henneman

Publications and source records attributed to Lidewij Henneman.

13 recordsLinked to original sources

PubMed2006

Public attitudes toward genetic testing: perceived benefits and objections.

The aim of this study was to assess public attitudes toward the availability and use of genetic tests to explore support for genomics developments and to help improve public discussion. Questionnaires to assess the assumed advantages and disadvantages of genetic testing were sent to a representative sample of the Dutch population (n = 1,308; age > or =25 years). The response was 63% (817/1,308). Two groups with extreme scores on a four-item scale were distinguished, representing opponents (n = 248) and supporters (n = 264) of the availability and use of genetic tests. Multiple logistic regression analyses showed that those who were familiar with a genetic disease (odds ratio [OR] 0.54; 95% confidence interval [CI] 0.32-0.89; p = 0.015), those who scored higher on a four-item scale on belief in personal benefits of testing (OR 0.29; 95% CI 0.21-0.40; p < 0.0001), and those who believe that knowledge of the genetic background of disease will help people to live more healthy lives (OR 0.48; 95% CI 0.37-0.62; p < 0.0001), were less likely to be opponents. Those who agreed that genetic testing is tampering with nature (OR 1.63; 95% CI 1.32-2.00; p < 0.0001) were more likely to be opponents. Other variables such as belief in genetic determinism, genetic knowledge, level of education, age, and gender were not significantly associated. These results suggest that in addition to moral acceptability, perceived usefulness is a precondition for supporting genetic testing. It is not expected that more information will necessarily result in more positive attitudes.

Adult↗

PubMed2006

Developing and optimizing a decisional instrument using self-reported ancestry for carrier screening in a multi-ethnic society.

PURPOSE: To develop a decisional instrument for ancestry-based cystic fibrosis and/or hemoglobinopathies carrier couple screening in The Netherlands. METHODS: A flowchart (Instrument A) and a questionnaire with maps of geographical areas with originally high cystic fibrosis and hemoglobinopathies carrier frequencies (Instrument B), were developed to support participants in self-assessing their eligibility as a couple for carrier screening for cystic fibrosis and/or hemoglobinopathies. The outcome was compared to the self-reported origin of both partners' ancestors during an in-depth interview. Furthermore, preference for Instrument A or B was determined. RESULTS: Of the 112 participants, 88% (99/112, 95% CI 82-94%) (Instrument A) and 91% (102/112, 95% CI 86-96%) (Instrument B), respectively, arrived at a decision in accordance with their ancestral origin, and 57% (64/112, 95% CI 48-66%) preferred Instrument B. A false negative proportion of 5.5% suggests that some carriers will exclude themselves from screening. Results might improve with minor changes in the instruments with regard to geographic specification, and availability of translated versions. CONCLUSION: A decisional instrument to assess ancestry-based eligibility for cystic fibrosis and/or hemoglobinopathies carrier screening, is now available and can with slight adaptations be used in other countries. The instrument also takes into account the possibility of mixed ancestry.

Adult↗

PubMed2005

Attitudes and risk perception of parents of different ethnic backgrounds regarding meningococcal C vaccination.

The aim of the present study is to assess the attitudes of parents toward vaccination as well as their risk perception of disease and vaccination. We interviewed 1763 parents of different ethnic groups (among others, Dutch, Turkish, Moroccan, and Surinamese parents). Results show that there were large differences in knowledge about disease and risk perception of disease and vaccination among parents of different ethnic backgrounds. Generally, people largely overestimated the risk of contracting the disease and the risk of dying after contracting the disease. Dutch parents were best informed, least worried, had the most critical attitude toward the campaign, and the lowest vaccination level compared to other parents. The differences in knowledge about vaccination and the more critical attitude of Dutch parents emphasize the need to take more into account parents' perspectives when designing information leaflets or other information media.

Adolescent↗

PubMed2005

Preconception cystic fibrosis carrier screening: costs and consequences.

The objective of the study was to determine net costs of four potential preconception cystic fibrosis (CF) carrier screening strategies, and to identify the most important cost-related parameters. An estimate was made of the costs of screening carried out during general practitioner (GP) consultations, and screening carried out during group educational sessions. Two test strategies were evaluated: single-entry two-step (SETS) and double- entry two-step (DETS). Several sensitivity analyses were performed. Under the baseline assumptions, SETS screening during GP consultations was the least expensive (net costs US dollar 1,111,354 per year). The sensitivity analysis showed that the costs depend greatly on the estimated lifetime costs of care for a CF patient and the strategy used to inform the target population. Adaptations could be made to the screening program, resulting in economic savings while the primary goal of the screening--to enable participants to make an autonomous informed choice--is guaranteed.

Cystic Fibrosis↗

PubMed2004

Preconceptional cystic fibrosis carrier screening: opinions of general practitioners, gynecologists, and pediatricians in the Netherlands.

Knowledge of the opinions of physicians with regard to preconceptional cystic fibrosis (CF) carrier screening and the possible factors that are associated with their opinions is important for the implementation of such a screening program. Data were obtained from a study in which genetic knowledge, opinions with regard to genetic testing and related skills were investigated. A questionnaire, developed and used by American researchers, was adapted to the Dutch health care situation, and sent to randomly selected general practitioners (GPs) (n = 200), gynecologists (GYNs) (n = 300), and pediatricians (PEDs) (n = 265). In this part of the study, their opinions with regard to genetic preconceptional CF carrier screening in different situations were assessed. The response rate for the GPs, GYNs, and PEDs was 64%, 69%, and 72%, respectively. In total, 63% of the GPs, 69% of the GYNs and 72% of the PEDs supported preconceptional CF carrier testing if a couple requested a test. Sixteen percent, 19% and 25%, respectively, were in favor of actively offering a test with 95% test sensitivity to all couples who were planning a pregnancy. A positive opinion on preconceptional CF carrier screening was associated with the following variables: "considering the test sensitivity as less important" (GPs, GYNs), "high perceived risk of having a child with CF" (GYNs), "providing genetic counselling in their own practice" (PEDs) and "reassurance when both partners test negative" (PEDs). Physicians are sympathetic toward preconceptional CF carrier screening if the couples themselves request a test. Physicians had reservations about routinely offering a CF carrier test.

Adult↗

PubMed2004

Preconceptional cystic fibrosis carrier screening: attitudes and intentions of the target population.

The aim of this study was to assess the attitudes and intentions of individuals planning a pregnancy with regard to preconceptional cystic fibrosis (CF) carrier screening and to determine factors associated with a positive and negative/neutral intention to have the test. A survey, based on a questionnaire, was conducted among a stratified random sample of 303 recently married couples (606 individuals). Of the eligible individuals, 70% (n = 380) participated. Of the respondents, 73% had a positive attitude toward a routine offer of preconceptional CF carrier screening, and 56% had the intention to participate in a screening program. A positive intention to have the test was associated with high perceived anticipation of regret, intended preconceptional behavior, high perceived pressure from experts, high perceived consequences of the test results, low perceived barriers, and low perceived negative consequences for family members. These results suggest that the offer of routine preconceptional CF carrier screening would lead to substantial acceptance among couples planning a pregnancy. Several variables related with intention were identified.

Adult↗

PubMed2004

Public experiences, knowledge and expectations about medical genetics and the use of genetic information.

OBJECTIVE: The objectives of this study were (1) to explore public experiences, genetic knowledge, expectations of future medical genetic developments, and the attitudes towards the use of genetic information, and (2) to determine whether there are subject characteristics associated with these variables. METHODS: Participants (n = 1,308, age > or = 25 years) of a Dutch consumer panel were sent a questionnaire, specifically designed for this study. RESULTS: Response was 63% (817/1,308). A minority of respondents reported to know someone with a hereditary disease (34%) or to have used a genetic test (8%). Overall, 57% perceived a lack of genetic knowledge. In multivariate analyses, high self-rated knowledge, younger age, having heard of genetic testing, high educational level, female gender, having children living at home, being a health professional, and familiarity with genetic testing were positively associated with genetic knowledge. Future expectations of the consequences of developments in medical genetics varied between the subjects. The great majority expected great benefits for medical practice such as an increasing use of genetic aspects of disease for diagnosis or prevention. One fifth, mainly older people, anticipated a negative impact of genetic developments on society. The results also show that most people are reserved to share their genetic information with others, especially with regard to the wider public domain (e.g. industry and insurers) and employers. Remarkably, respondents were more willing to share their genetic information with scientific researchers (68%) than with their relatives (54%). CONCLUSION: This study suggests that although one fifth anticipates negative consequences of genetic developments, the great majority has high expectations about the increasing use of genetics in prevention, diagnosis and treatment of diseases. In developing educational programmes about genetic innovations in medicine, policymakers will have to take into account pre-existing lay knowledge, views and expectations of different groups of citizens towards these developments.

Adult↗

PubMed2003

Offering preconceptional cystic fibrosis carrier couple screening in the absence of established preconceptional care services.

OBJECTIVE: To investigate the feasibility and acceptability of different modes of offering preconceptional carrier screening for cystic fibrosis (CF) in the absence of established preconceptional care services. METHODS: Individuals aged 20-35 years were invited by mail, either by the Municipal Health Services (MHS) or by their own general practitioner (GP) to participate in a screening program with their partner. Pretest education was provided either during a group educational session or during a GP consultation. The reasons given by participants and nonrespondents for (not) responding to the invitation for screening, sociodemographic characteristics, and their attitudes were assessed by means of questionnaires. RESULTS: Of 38,114 individuals who received a first invitation, approximately 20% had a partner with whom they were planning to have children. The response rate, as measured by attendance at either a group educational session or a GP consultation, was not affected by whether the letter was sent by the MHS or the person's GP. However, the response rate was about 2.5 times higher when the letter invited people to make an appointment with their GP for a consultation regarding CF carrier screening than when it invited them to attend an educational group session. A total of 559 couples (96%) consented to have the test after education. Repetition of the invitation increased the response. The main reason given by couples for not responding was "lack of time to attend" or "forgot about it" (48%). Another reason given was that they did not want to know their test results (28%). Eighty-nine percent of participants and 69% of nonrespondents believed that screening should be offered routinely to couples planning to have children. The GPs consulted (n = 18) reported no negative experiences, but due to the extra workload, 11 of them would not consider it to be part of their task. CONCLUSIONS: Among couples planning to have children, there is generally a positive attitude towards routinely offering population-based CF carrier screening. Preconceptional CF carrier screening appeared feasible, both in terms of practical achievements and target group accessibility. Participation varied according to the pretest education setting, with the primary care setting producing the highest rate of attendance.

Adult↗

PubMed2003

How should preconceptional cystic fibrosis carrier screening be provided? Opinions of potential providers and the target population.

BACKGROUND: Since the identification of the cystic fibrosis (CF) gene, large-scale CF carrier screening has become possible. One possible target group is couples planning a pregnancy (preconceptional screening), providing a maximum number of reproductive options and a minimum of time constraints. OBJECTIVES: To identify obstacles in the implementation of a preconceptional CF carrier screening programme, to find out how potential providers and the target population think the screening should be implemented, and to determine whether potential providers think they are able to provide the screening programme. METHODS: A survey was conducted among 200 general practitioners (GPs), 134 Municipal Health Service (MHS) workers and 303 recently married couples. RESULTS: 52% (102/197) of the eligible GPs participated, 84% (113/134) of the MHS workers and 70% (380/544) of the individuals planning a pregnancy. In general, potential providers and the target population had a positive attitude towards CF screening. Preferred methods of informing the target population were: in leaflets, during a GP consultation for those people seeking advice before pregnancy, and sending a personal invitation to all people of reproductive age. Potential providers believed that they would be able to provide the screening programme. Important perceived obstacles were the absence of a preconceptional care setting, high workload, and lack of financial resources. CONCLUSION: Different intervention strategies will be necessary to overcome the obstacles in the implementation. The positive attitude towards CF carrier screening in combination with the willingness of the potential providers to participate in the screening programme will make it easier to overcome the obstacles.

Adult↗

PubMed2002

Personal experiences of cystic fibrosis (CF) carrier couples prospectively identified in CF families.

This qualitative study explores the experiences of cystic fibrosis (CF) carrier couples, prospectively identified in CF families, and the impact of the resulting genetic risk on reproductive behavior. Of the 12 couples identified until 1997, seven couples participated in semistructured interviews and two couples filled in a questionnaire, two to eight years after receipt of the test-results. After receiving the results, most couples reported that they were shocked, because they did not expect to both be carriers. More anxiety was expressed by those who were pregnant (n = 4) at the time of testing. There were reported difficulties in disclosing the results to family members, and the reactions of family members were not always supportive. After testing, some couples had problems with reproductive decision-making. All viable pregnancies (17 in 8 couples) were monitored by prenatal diagnosis; all affected pregnancies were terminated (6 in 4 couples). Couples who have live-born children after testing may subsequently have concerns during infancy about the correctness of the results of prenatal diagnosis and how to inform their children. Most couples did not regret the testing and, in general, the counseling was experienced positively, although some dissatisfaction was reported with regard to the psychological support received during pregnancy. Couples supported the idea of carrier screening in the general population, although various concerns were expressed. The results indicate a preference for testing before pregnancy. These findings may be useful in investigating possible dilemmas caused by the introduction of population carrier screening. Observations reported here might also apply to other recessively inherited disorders.

Cystic Fibrosis↗

PubMedDate not supplied

Evaluation of cystic fibrosis carrier screening programs according to genetic screening criteria.

Genetic screening programs should meet certain criteria before they can be introduced into the community. The aim of this study was to discuss pilot studies for cystic fibrosis (CF) carrier screening before and during pregnancy in the light of important genetic screening criteria. Overall, CF carrier screening meets the prerequisites that justify screening. However, more specific criteria for the development of screening programs were not always taken into consideration. Most project leaders concentrated on uptake as an important outcome, and less on informed decision-making. To further investigate the long-term psychological and social effects of genetic screening, continuous monitoring of screening projects is recommended.

Cystic Fibrosis↗

PubMedDate not supplied

Deficient knowledge of genetics relevant for daily practice among medical students nearing graduation.

PURPOSE: The objective of this study was to investigate whether the knowledge of genetics relevant for daily practice among medical students nearing graduation in the Netherlands was sufficient to react appropriately to the change of relevance of genetics in medicine. METHODS: A computer examination validated in a group of clinical geneticists, medical students nearing graduation, and nonmedical students. The examination consisted of 215 genetic questions classified by the designers into three categories of relevance: "essential" knowledge (requirement: > 95% correct answers), "desirable" knowledge (requirement: > 60% correct answers), and "too specialized" knowledge (no requirement). To set an independent standard, the questions were also judged by clinical geneticists and nongenetic health care providers in an Angoff procedure. In total, 291 medical students nearing graduation from seven out of the eight medical schools in the Netherlands participated. RESULTS: As expected, the mean score for "essential" knowledge (71.63%, 95% CI 70.74-72.52) was higher than for "desirable" knowledge (55.99%, 95% CI 55.08-56.90); the mean score for "too specialized" knowledge (44.40%, 95% CI 43.19-45.62) was the lowest. According to passing scores set for "essential" knowledge as defined by the designers, the clinical geneticists, and the nongenetic health care providers, only 0%, 26%, and 3%, respectively, of the participants would have passed. CONCLUSIONS: Medical students nearing graduation lack genetic knowledge that is essential for daily practice. Therefore, changes should be made in the medical curricula.

Analysis of Variance↗

PubMedDate not supplied

Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem.

PURPOSE: The objective of this study was to assess knowledge of genetics and awareness of genetic tests among Dutch general practitioners (GPs), gynecologists (GYNs), and pediatricians (PEDs), as well as factors influencing their knowledge and awareness. METHODS: An anonymous questionnaire inquiry was used, validated with a sample of 52 clinical geneticists (CGs). The study was carried out in primary care (general practice) and secondary care (general and university hospitals) in The Netherlands. A random sample of 200 GPs, 300 GYNs, and 265 PEDs received a questionnaire. In addition, all registered CGs (58) received a questionnaire for validation. In total, 122 GPs, 187 GYNs, 164 PEDs, and 52 CGs returned a completed questionnaire. The main outcome measures were differences in knowledge scores between physicians working in different disciplines and factors influencing these scores. RESULTS: Knowledge scores of GPs (mean 64% correct answers, 61%-66% [95% confidence interval]), GYNs (mean 75% correct answers, 73%-76% [95% confidence interval]), and PEDs (mean 81% correct answers, 79%-82% [95% confidence interval]) were lower than those in the CG validation group (mean 95% correct answers, 94%-96% [95% confidence interval]). The 5th percentile of GPs, GYNs, and PEDs was at approximately 40%, 52% and 62% correct answers, respectively. There was a specific lack of knowledge about DNA testing. In addition to specialty, important factors positively associated with the knowledge scores of nongeneticists are more recent graduation, having taken an elective course in genetics, and providing genetic counseling in their own practice. CONCLUSION: The overall knowledge levels of genetics in many nongeneticist health care providers show clear deficiencies. This is in line with reports from other countries, showing that these deficiencies are a global problem.

Genetic Testing↗