[Experiences of women who decided to continue the pregnancy after diagnosis of Down's syndrome]. / Ervaringen van vrouwen die besloten de zwangerschap uit te dragen na de diagnose 'Down-syndroom'.

OBJECTIVE: To gain insight into the motives and experiences of women who had decided to continue with the pregnancy after Down's syndrome had been diagnosed in the foetus. DESIGN: In-depth interviews. METHOD: In ten women who had decided to continue her pregnancy after Down's syndrome had been diagnosed in the foetus, qualitative in-depth interviews were held. Four women were pregnant at the time of the interview, the other six were parent of a Down's syndrome child already. One of the women was in her first pregnancy, the other nine had been pregnant once or several times. Four women had problems in their history (subfertility, miscarriage, in-vitro fertilisation). RESULTS: Many pregnant women were confronted with an increased risk as the result of maternal serum testing or nuchal translucency. They hoped to reduce the uncertainty which had arisen by submitting to an amniocentesis or a chorionic villus sampling. The result of this diagnostic test put those concerned in the position of having to make a difficult decision. They had to make the choice between having to bring up a child with intellectual limitations or allowing the termination of an already well-advanced pregnancy. For the ten respondents, the latter proved to be unacceptable. Initially, little understanding was shown for the parent's decision by some social and medical workers; however, sufficient help and support were usually given. The respondents received a lot of support from members of their family, friends and acquaintances, but there were also negative and disapproving reactions. Only one woman regretted the examination. CONCLUSION: As the technological possibilities for determining individual risks during pregnancy increase, it will occur more often that women hesitate to have their pregnancy terminated after diagnostic testing has identified Down's syndrome. Whatever decision is made, those involved should be treated with understanding.

[Psychosocial consequences of screening for microalbuminuria and for some other risk factors]. / Psychosociale gevolgen van een screening op microalbuminurie en op enkele andere risicofactoren.

OBJECTIVE: Obtaining insight into the psychosocial consequences of a screening programme for the progression of heart, vessel and kidney damage. DESIGN: Questionnaire investigation. METHOD: This study addressed participants in the 'Prevention of renal and vascular end-stage disease' (PREVEND) study, which included about 40,000 inhabitants of Groningen, the Netherlands, aged 28-75 years, who were asked to send in a vial with morning urine in order to detect microalbuminuria. People with microalbuminuria were invited to a general practitioners' laboratory to determine the risk factors: urinary protein concentration, blood pressure and blood cholesterol level. A questionnaire was sent to 335 participants of the screening who had received the screening results two weeks before. RESULTS: The response rate was 75%. A minority of the respondents diagnosed with risk factors, expressed some concern. No influence on the wellbeing of this group of participants was established. Almost one-third of the respondents stated that they now 'lived according to healthier principles' because of the screening. On the other hand, there was a certain 'certificate of health effect': about half the smokers and the physically inactive saw the favourable screening result as a legitimation for their life style. An unfavourable screening result had led to additional medical consumption in almost half the respondents. The respondents appreciated the screening and especially the lower-educated had a very positive attitude towards early diagnosis in general. CONCLUSION: The screening positives showed no diminished wellbeing; their health behaviour improved due to the screening and they had a higher medical consumption. About half the screening negatives regarded the results as a legitimation of their unhealthy life style.

Costs, effects, and savings of screening for cystic fibrosis gene carriers.

STUDY OBJECTIVE: Evaluating the costs, effects, and savings of several strategies for cystic fibrosis (CF) gene carrier screening. DESIGN: A general model for evaluating prenatal, preconceptional, school, and neonatal carrier screening was constructed. For prenatal and preconceptional screening, two strategies were evaluated: single entry and double entry two step couple screening. Firstly, the Dutch situation was evaluated prospectively; subsequently the results were generalised to other carrier frequencies. SETTING: Prospective simulation model. MAIN RESULTS: Of all screening strategies, neonatal carrier screening gives most carrier couples an informed choice concerning reproduction. If the parents of carrier newborns would not be tested however, prenatal screening detects most carrier couples. Prenatal and single entry preconceptional screening programmes have a favourable cost-savings balance in the Netherlands under a wide range of assumptions. For double entry preconceptional screening and neonatal screening, high enough values of uptake of screening, prenatal diagnosis, and induced abortion are necessary. School carrier screening does not have a favourable cost-savings balance. CONCLUSIONS: If a CF screening programme is judged to be useful on individual and social grounds, costs considerations are no obstacle for prenatal and single entry preconceptional screening.

[End of life and termination of life: opinions of elderly persons with health problems]. / Levenseinde en levensbeëindiging: meningen van ouderen met gezondheidsproblemen.

OBJECTIVE: To determine the views of elderly persons with physical limitations about a number of aspects of the end stage of life and termination of life. DESIGN: Enquiry. SETTING: University of Groningen, the Netherlands. METHOD: An enquiry was conducted in 1995 among 575 elderly (429 females, 146 males; age 57-99 years; 281 living alone) with physical restrictions (mostly heart disease, hypertension, rheumatism or other articular diseases). The group had been selected from the 'Groningen longitudinal aging study'. The respondents were asked (a) what they thought about euthanasia, (b) whether they worried about the end stage of life, (c) whether they were afraid of death and how much they were 'preoccupied with death'. For the last-mentioned two questions a visual analogue scale was used. RESULTS: Almost one-third of the elderly were not preoccupied with death and over half were not afraid of death. Very few scored high on these scales. Respondents' views about the acceptability of active termination of life varied greatly: almost half were of the opinion that their life had to be terminated once they themselves had developed complete dementia. Regarding the end stage of life, respondents mostly worried about being a burden to others, being completely dependent on others, having to say goodbye to their loved ones and having to suffer greatly. Elderly persons with poorer health were more preoccupied with death and worried more about the problems of the end stage of life. CONCLUSION: Most of those interviewed were not greatly preoccupied with or afraid of death. They did worry, however, about the problems that might be associated with the end stage of life.

The nonhospital costs of care of patients with CF in The Netherlands: results of a questionnaire.

Cystic fibrosis (CF) causes a relatively high medical consumption. A large part of the treatment takes place at home. Because data regarding nonhospital care are lacking, we wished to determine the costs of care of patients with CF outside the hospital. A questionnaire was sent to 73 patients with CF from two Dutch hospitals (response rate 64%, 14 children and 33 adults). Average consumption and average costs per patient per year were calculated for children and adults for six categories: nonhospital medical care; domestic help; diet; travelling because of CF; medication; and devices and special facilities at home, work or school. The average nonhospital costs of care amounted to Pounds 4,641 per child per year (range Pounds 712-13,269) and Pounds 10,242 per adult (range Pounds 1,653-26,571). Nonhospital medical care for children and adults accounted for, respectively, 8 and 5% of these costs, domestic help for 15 and 9%, diet for 10 and 7%, travelling because of CF for 4 and 8%, medication for 63 and 67%, and devices and special facilities at home, work or school for 1 and 4%. Nonhospital costs of care of cystic fibrosis are very high and amount to 50% of the total (medical and nonmedical) lifetime costs of cystic fibrosis.

Cost of care of patients with cystic fibrosis in The Netherlands in 1990-1.

BACKGROUND: Research on the cost of care of patients with cystic fibrosis is scarce. The aim of this study was to estimate the costs using age-specific medical consumption from real patient data. METHODS: The age-specific medical consumption of patients with cystic fibrosis in The Netherlands in 1991 was estimated from a survey of medical records and a patient questionnaire. A distinction was made between costs of hospital care, hospital and non-hospital medication, and home care. Costs per year were obtained by multiplying the yearly amount of care and the costs per unit. RESULTS: On average the annual cost of a patient with cystic fibrosis in 1991 was 10,908 pounds (hospital care 42%, medication 37%, home care 20%). The cost of care of cystic fibrosis in The Netherlands, with approximately 1000 patients, is estimated at 10.9 million pounds per year, which is 0.07% of the total health care budget. The cost of care of a patient up to the age of 35 is estimated at 614,587 pounds. When year-to-year survival is taken into account and future costs are discounted to the year of birth with a yearly discount rate of 5%, the cost of care of a patient with cystic fibrosis is estimated at 164,365 pounds for 1991. This estimate will be used in a prospective evaluation of screening for cystic fibrosis carriers. CONCLUSIONS: The cost of care of patients with cystic fibrosis estimated by age-specific medical consumption of real patients is higher than that estimated by non-age-specific medical consumption and/or expert opinions.

Complications and side effects: a problem in general practice?

On basis of secondary analysis of data obtained from the 'Dutch National Survey of Morbidity and Intervention in General Practice', we tried to gain insight into the nature and extent of iatrogenic illnesses in general practice. In this registration project 386,000 contacts of patients with 161 GP's have been recorded, using the International Classification of Primary Care (ICPC). We confined ourselves to 'side effects of medication' and 'complications of medical treatment'. It appears that in two percent of all contacts the GP has made one of these two diagnoses, or has considered these. On average, the patients concerned suffered twice more often serious invalidating or danger of life.Herewith these two groups of iatrogenic harm constitute an important problem in general practice.

Women's opinions on the use of folic acid.

All women in The Netherlands who are planning a pregnancy were recently advised to take 0.5 mg of folic acid per day for 4 weeks prior to conception and during the first 8 weeks of pregnancy. In this study we sought to determine whether women were willing to use folic acid or not, and the factors that affected this willingness. Questionnaires were sent to 327 women. The response rate was 57%. The results of this study showed that the majority of women (65.5%) were willing to use folic acid. The main reason for this is that women "would like to have a healthy child". Another important reason is the fear of having regrets afterwards.

[How women cope with the results of maternal serum screening for fetal neural tube defects and Down syndrome]. / Hoe vrouwen omgaan met de uitslag van maternale-serumscreening op foetale neurale-buisdefecten en Down-syndroom.

At the University Hospital of Groningen maternal serum screening for fetal neural tube defects and Down's syndrome is available to pregnant women on their request. We have inquired into the reasons why women apply for serum screening and how this affects them. We did so by means of questionnaires sent to 200 women and by interviewing 20 women whose screening result indicated an increased chance of giving birth to a Down's syndrome child. The response percentage was 52.5. It appeared that opting for serum screening is seen as a self evident choice rather than a conscious one. In general, at the time of the decision, the women only saw the advantages of the test while possible consequences were often not taken into account. More than 70% of the women said they would apply for amniocentesis if they were told that they had an increased risk of having a baby with Down's syndrome. The confrontation with an increased risk of Down's syndrome then came unexpectedly and caused much distress. How to deal with the risk assessment results proved to be very difficult for these women. The difference in scale of the risk factor as established by the screening test compared with the original risk factor based on maternal age was interpreted by them as being of more significance than the statistical implication of the factor itself.

[Results of liver transplantation in children; parents' opinion]. / Resultaten van levertransplantatie bij kinderen; de mening van de ouders.

Since 1982, the liver transplantation team of the University Hospital of Groningen has been carrying out transplantations in children. This article focuses on the experiences of the parents of 19 children who have undergone transplantation. An interview and two questionnaires were used to collect the data. Data concerned children's physical and psychosocial functioning and their daily behaviour. Five older children also filled in two questionnaires. In general, parents were positive about their child's functioning. When the interviews were analysed at an individual level, several problems were reported, however. These problems did not fall within one specific domain. As a consequence, the questionnaires did not show any significant differences between these children and a matched control group of healthy children. The parents of the children aged 1-3 yr were more positive about their children's functioning than the parents of the children aged 4-12 yr. The positive results should be assessed in the light of children's functioning before transplantation: when compared with pre-transplantation problems, present problems are of little significance.

[Opinion of primiparae on the possibility of sex selection]. / Oordeel van primiparae over de mogelijkheid van sekseselectie.

Recent medical-technological developments such as chorionic villi sampling and in vitro fertilization make sex selection in principle possible. The literature and our own experiences suggest an increasing demand for it. We interviewed a selected group of 180 women regarding sex selection, of whom 127 responded. More than 80% of these rejected a selection based on sex. The legitimacy of withholding information about the sex of the foetus is questionable. The existence of a demand, however small, should prompt professionals to take a stand about its acceptability.

[Women's opinion concerning oocyte donation for pre-embryonic studies]. / Meningen van vrouwen over eiceldonatie voor pre-embryo-onderzoek.

For the benefit of pre-embryonal research, women requesting sterilization may be asked whether they are prepared to donate egg cells. Recently, a questionnaire was sent to 144 women who had given birth to their second or third child at the University Hospital Groningen, asking them how they felt about egg cell donation: 68 (47%) of the questionnaires was returned. Of the respondents 45 (66%) felt that a request for donation could be made to women who were admitted to hospital for sterilization. 22 (32%) of the respondents said they would be willing to donate an egg cell themselves. Of these women, 10 said they would be willing to use hormone preparations for this purpose.

The psychological and social implications of serum cholesterol screening.

Mass screening of the population to detect cases of lipid derangement which could be at a higher risk for cardiovascular disease is not without its complications and risks. These have been demonstrated primarily in older screening programmes, e.g. for breast cancer or hypertension. They include the difficulties created by inconstant and variable findings, the risk of profound anxiety where findings are positive, the temptation to handle any abnormal finding by prolonged medicinal treatment, but also the neglect of healthy lifestyles where a negative finding suggests a "clean bill of health" or a drug is thought to guarantee normality. Screening and treatment programmes created under technological, scientific or commercial pressures can seriously derange the allocation of health care resources. Such programmes should be instituted only for sound medical reasons and with adequate planning for patient guidance, follow-up and risk evaluation.