Effect of culturally competent educational films about prenatal screening on informed decision making of pregnant women in the Netherlands.

OBJECTIVE: To evaluate the effect of a culturally competent educational film (CCEF) on informed decision making (IDM) regarding prenatal screening (PS) in a study population consisting of multicultural pregnant women. METHODS: A cross-sectional study with 262 women in the control group and 117 in the intervention group. All counselled participants received a self-report questionnaire to obtain data on IDM and only the intervention group received the CCEF. Twenty two percent of the study population had an ethnic minority background and 52% had a low or medium educational level. RESULTS: After exposure to the CCEF, knowledge about the Fetal Anomaly Scan (FAS) was significantly increased in ethnic minority women and in 'medium' and 'highly' educated women. Among women in the intervention group who had the intention to participate in FAS, there was an increase of 11% in IDM and a decrease of 12% in uninformed decision making. CONCLUSION: CCEF leads to a significant increase in the level of knowledge in medium and highly educated groups as well as non-western ethnic minority groups. The increase in IDM among intentional participants in the FAS is promising as well. CCEF's are a valuable complement to counseling about PS.

Informed decision-making in prenatal screening for Down's syndrome: what knowledge is relevant?

OBJECTIVE: To determine the content of decision-relevant knowledge needed for informed decision-making about (non-) participation in prenatal screening for Down's syndrome (DS), in order to develop a knowledge questionnaire for routine application in large-scale programme evaluations. METHODS: A generic list of content domains for knowledge about screening was extracted from the literature. Items reflecting specific knowledge domains were constructed. An expert group of professionals and pregnant women expressed whether domains and items represented decision-relevant information. RESULTS: All presented domains were scored as (very) important. Options when receiving an 'increased probability for DS' test result, the meaning of this result, the aim of the screening, and voluntary nature of the test were scored as most important. The condition being screened for, prevalence, and the screening procedure were scored as relatively less important, with a high amount of expert consensus. CONCLUSION: A knowledge measure for prenatal screening for DS was developed, based on domains and items acquired by expert consensus. PRACTICE IMPLICATIONS: This measure of decision-relevant knowledge can be used in routine, large-scale evaluations of the procedure for offering information about prenatal screening for DS.

Informed decision-making about the fetal anomaly scan: what knowledge is relevant?

OBJECTIVES: This study had two objectives. The first was to determine the contents of relevant knowledge needed for informed decision-making (IDM) in second-trimester ultrasound screening for fetal anomalies, with the goal of developing a knowledge measure for use in large-scale program evaluations. The second was to compare the contents of decision-relevant knowledge for second-trimester ultrasound screening with those for first-trimester screening for Down syndrome using the combined test. METHODS: A generic list of content domains for knowledge about screening was extracted from the literature. Items reflecting specific knowledge domains for second-trimester ultrasound screening were constructed. An expert group of professionals and pregnant women expressed whether domains and items represented decision-relevant knowledge. RESULTS: Regarding second-trimester ultrasound screening, the experts scored all knowledge domains as (very) important. The meaning of an abnormal test result, the disorders being screened for, and the purpose of the screening were rated as very important for IDM, along with the voluntary nature of the test. All knowledge domains were included in the final measure. Importance ratings of knowledge domains for first-trimester Down syndrome screening and for second-trimester ultrasound screening were highly correlated (Pearson's r = 0.71). The domain 'consequences of a positive test result' was considered more important in first-trimester Down syndrome screening than in second-trimester ultrasound screening. CONCLUSIONS: We have developed a knowledge measure for second-trimester ultrasound screening for fetal anomalies for use in routine, large-scale program evaluations.

Detecting language problems: accuracy of five language screening instruments in preschool children.

To identify a simple and effective screening instrument for language delays in 3-year-old children the reliability, validity, and accuracy of five screening instruments were examined. A postal questionnaire sent to parents of 11423 children included the Dutch version of the General Language Screen (GLS), the Van Wiechen (VW) items, the Language Screening Instrument for 3- to 4-year-olds, consisting of a parent form (LSI-PF) and a child test (LSI-CT), and parents' own judgement of their child's language development on a visual analogue scale (VAS). The response rate was 78% or 8877 children. Reliability (internal consistency) was found to be acceptable (alpha=0.67-0.72) for all instruments. Significant correlations between the screening instruments (r=0.29-0.55, p<0.01) indicated good concurrent validity. Accuracy was estimated by the sensitivity, specificity, and receiver operating characteristic (ROC) curves against two reference tests based on parent report and specialists' judgement. If the test would classify approximately 5% of the population as screen-positive, the mean sensitivity was 50%; assigning between 20% and 30% of the population as screen-positive, the mean sensitivity was 77%. The sensitivity was lowest for the LSI-CT (range 43-62%), whereas short instruments like the LSI-PF, VW, and the one-item VAS exhibited high levels of sensitivity (range 50-86%). The area under the ROC curves, ranged from 0.75 to 0.87. Apparently, short and simple parent report instruments like the LSI-PF and the one-item VAS perform remarkably well in detecting language delays in preschool children.

A cluster-randomised trial of screening for language disorders in toddlers.

OBJECTIVE: To assess the screening performance of a specific language-screening instrument at 18 and 24 months of age and to assess its effect on the early detection and prognosis of language delay. DESIGN: Child health care physicians were randomised to the intervention group, in which specific language screening was conducted twice (at age 18 months and 24 months), or to the control group (usual care). The specific screening instrument consisted of a uniform set of questions for the parents and test elements for the child, with scaled scores to assess responses. SETTING: Child health care in the Netherlands and referral of screen-positive children. SUBJECTS: 5734 children in the intervention group and 4621 in the control group. MAIN OUTCOME MEASURES: Test characteristics and disorders at 24 months, and confirmed diagnoses of a language disorder before 36 months in both groups. Gold standard based on reports of parents, specialists and expert panel. Prognosis estimated from two diagnostic language development performance scores at 36 months (in questionnaire). RESULTS: In the intervention group, 3147 of the 5734 children (55%) were screened with the specific screening instrument and 73 of the screened children (2.3%) were screen-positive. Of the screen-positive children, 41 (55%) had confirmed language delay (diagnostic assessment and/or reported treatment). The estimated sensitivity of the test ranged between 24-52% depending on the severity of language disorders. The prevalence of language disorders in three-year olds was estimated to be 2.4-5.3%. In the intervention group, 1.25-2 times more children with language delay had been diagnosed before 36 months. The assessment of language development at 36 months showed no statistically significant differences between the intervention and the control groups. CONCLUSIONS: The inclusion of a specific language-screening instrument in child health centre activities resulted in the earlier detection of children with language delay. Short-term health benefits could not be demonstrated. Large-scale introduction cannot be recommended on the basis of this information alone.

Which chronic conditions are associated with better or poorer quality of life?

The objective of the present study is to compare the QL of a wide range of chronic disease patients. Secondary analysis of eight existing data sets, including over 15,000 patients, was performed. The studies were conducted between 1993 and 1996 and included population-based samples, referred samples, consecutive samples, and/or consecutive samples. The SF-36 or SF-24 were employed as generic QL instruments. Patients who were older, female, had a low level of education, were not living with a partner, and had at least one comorbid condition, in general, reported the poorest level of QL. On the basis of rank ordering across the QL dimensions, three broad categories could be distinguished. Urogenital conditions, hearing impairments, psychiatric disorders, and dermatologic conditions were found to result in relatively favorable functioning. A group of disease clusters assuming an intermediate position encompassed cardiovascular conditions, cancer, endocrinologic conditions, visual impairments, and chronic respiratory diseases. Gastrointestinal conditions, cerebrovascular/neurologic conditions, renal diseases, and musculoskeletal conditions led to the most adverse sequelae. This categorization reflects the combined result of the diseases and comorbid conditions. If these results are replicated and validated in future studies, they can be considered in addition to information on the prevalence of the diseases, potential benefits of care, and current disease-specific expenditures. This combined information will help to better plan and allocate resources for research, training, and health care.

Practice variation of test procedures reportedly used in routine antenatal care in The Netherlands.

BACKGROUND: Pregnant women are encouraged to book for antenatal care. However, little is known about the contents of antenatal care, in particular regarding various test procedures. The present descriptive study was conducted to assess the variation in standard test procedures in antenatal care in The Netherlands. METHODS: A nationwide structured survey by mailed questionnaire was carried out among specialist obstetricians and midwives in The Netherlands. Representatives of each obstetric practice registered with the Dutch Society of Obstetrics and Gynecology (n=132) and a sample of midwives registered with the Dutch Society of Midwives (n=394) were invited to report the standard policy of tests routinely used for antenatal care in their own setting. Furthermore, they were asked to report their views on the potential impact of the antenatal care program on pregnancy outcome. RESULTS: Complete information was available from 105 specialist obstetricians (80%) and 281 midwives (71%). The assessment of maternal blood pressure and weight are reportedly the commonest procedures routinely conducted during the antenatal period. However, within each profession reported definitions and implications of abnormal findings vary markedly, especially in the fields of identification and management of hypertensive disorders in pregnancy. Serial examination of the cervix is not standard policy among both groups. With respect to laboratory tests, considerable intra- and interprofessional variations are reported, in particular those for maternal serum glucose, rubella antibody titer and urinary dipstick for glucose and protein. As to standard ultrasound policies, wide intra- and interprofessional variations are noted. Seventy-two specialist obstetricians (68%) and 92 midwives (33%) routinely estimate the duration of gestation by ultrasound in pregnant women (p<0.001). A fetal anomaly scan at about 18-20 weeks' gestation is routinely offered to pregnant women by 31 specialist obstetricians (30%) and 44 midwives (16%) (p<0.01); 29 obstetricians (28%) and 11 midwives (4%) reportedly use ultrasound in all pregnant women for the detection of fetal growth restriction (p<0.001). Overall, midwives have a more optimistic view about the impact of antenatal care on pregnancy outcome than obstetricians. CONCLUSIONS: Although the standard package of antenatal care provided by both specialist obstetricians and midwives in The Netherlands seems to be relatively uniform, wide intra- and interprofessional variations exist with respect to (1) the application of tests in terms of recommendations to test some or all pregnant women, (2) defining normal from abnormal and (3) potential implications of abnormal findings.

NHP or SIP--a comparative study in renal insufficiency associated anemia.

In this study we compared the feasibility, internal structure and psychometric characteristics (internal consistency, test-retest reliability, construct validity) of two widely used generic health status measures, i.e. the Nottingham Health Profile (NHP) and the Sickness Impact Profile (SIP) when employed among a sample of patients on renal dialysis (n = 63). The NHP was found to be more feasible, i.e. shorter and less difficult, than the SIP. The NHP scales showed somewhat higher levels of internal consistency (mean alpha = 0.67, range = 0.39-0.80) than the SIP scales (mean alpha = 0.65, range = 0.14-0.82). Test-retest reliability with a 24-hour interval was acceptable for most NHP scales (not available for the SIP in this study). Intercorrelations between the NHP scales were somewhat weaker than those for the SIP, and the expected patterns of scale intercorrelations were largely confirmed. The overall pattern of correlations between NHP scales and SIP scales was consistent with expectations, although the correlations were generally rather weak. Correlations between NHP scales and SIP scales and instruments measuring mainly physical functioning (ADL, Karnofsky) were largely as expected. Similarly, correlations between NHP scales and SIP scales and instruments measuring mainly psychological functioning [STAI (anxiety), SDS-Zung (depression)] were also as expected, although here the correlations were weaker for the SIP when compared with the NHP. The Index of Well-being exhibited intra-class correlations > 0.3 with one SIP scale and with five out of six NHP scales. Common factor analysis, yielding a two-factor solution with a physical and a mental factor of equal importance, showed the SIP scales to load more on the physical factor, while the NHP scales loaded more on the mental factor. The NHP generally performed better than the SIP in terms of feasibility and internal consistency. Physical functioning is emphasized in the SIP, whereas the emphasis of the NHP lies on mental functioning. The analysis confirmed to some extent the intentions of the constructors of NHP and SIP respectively, i.e. the NHP to be a measure of perceived health and the SIP to be a more functional measure.

Test-retest reliability of health state valuations collected with the EuroQol questionnaire.

This study is a contribution by the Dutch participants to the research programme of the EuroQol Group. This collaborative group of researchers engaged in outcome measurement is working towards the development of a standardized, non-disease-specific instrument for describing and particularly valuing health-related quality of life. The present article analyses the test-retest reliability of the valuations collected with the EuroQol questionnaire in a population survey (n = 208). The choice of the appropriate method for test-retest analysis is discussed and the results of several approaches with the EuroQol data are shown. Generalizability Theory is proposed as the most suitable method. This method is the most comprehensive, giving distinct information about the relative contributions of different sources of variance. The EuroQol valuations appear to have good test-retest reliability.

Preventive Pap-smears: balancing costs, risks and benefits.

The pattern of spontaneous screening for cervical cancer by general practitioners and gynaecologists in The Netherlands is compared with an efficient screening policy resulting from a cost-effective study. Spontaneous screening tends to start and stop too early in a woman's life, and leaves too many women overscreened or unprotected. The combination in young age of a low incidence of invasive cancer and a high incidence of regressive lesions explains relative ineffectiveness and harmfulness of present screening practice. When screening would take place between ages 30 and at least 60, with intervals of about 5 years, as many lives could be saved for half the costs and with only 60% of the unnecessary referrals and treatments. Much attention should be paid to the coverage of the target population. Therapeutic follow-up policies for dysplastic lesions should be restrained.

The impact of a breast cancer screening programme on quality-adjusted life-years.

Trials have shown that breast cancer screening is effective in reducing breast cancer mortality and gaining life-years. The question is whether taking into account the impact of a screening programme on quality of life would lead to a less positive view. Screening may have effects on quality of life in the short run for women participating and effects in the long run as a result of the expected shift in the number of women experiencing early and advanced phases of the disease, after the initiation of the programme. In this study 4 steps have been taken: (I) published studies on quality of life and breast cancer (screening) up to 1989 have been reviewed and summarized and, based on these data, the consequences of breast cancer and treatment have been described; (2) values have been assigned to the disease and treatment phases by experts in breast cancer and public health (N = 31, response 87%); (3) these values have been inserted in the MISCAN model predicting the prevalence of disease/treatment phases with and without a 2-yearly screening programme for women aged 50-70 and multiplied by the duration of these phases; (4) analyses have been done to establish the sensitivity of the results for the values inserted. The programme of 2-yearly mammographic screening for women aged 50-70 is predicted to be 8% "less effective" (range -19.7 to +3.2%) when computing quality-adjusted life-years. We conclude that this adjustment is too small to attribute a major role to quality of life in the decision to undertake a large-scale breast cancer screening programme.

Cervical-cancer screening: attendance and cost-effectiveness.

The influence of attendance on the health effects and cost-effectiveness of cervical-cancer screening was studied, both for organized screening programmes and for spontaneous screening. The asymmetric distribution of smears among the female population and the higher risk incurred by women who never or only occasionally attend screening appear crucial in determining the health effects of screening. An increase in attendance rate induces a substantial rise in health effects and a less than proportionate rise in costs, thus improving cost-effectiveness. Wider screening coverage, in order to increase the number of life-years saved, is achieved more efficiently by encouraging a greater number of women to attend than by inviting the same number of women to attend more often, i.e., with a shorter interval between successive screens. Spontaneous screening is characterized by high coverage for younger women and low coverage for middle-aged and older women. This leads to a small amount of health effects and poor cost-effectiveness as compared with organized screening.

Diagnostic and treatment procedures induced by cervical cancer screening.

The amount of diagnostic and treatment procedures induced by cervical cancer screening has been assessed prospectively and related to mortality reduction. Assumptions are based on data from Dutch screening programmes and on a scenario for future developments. With 5 invitations for screening, between ages 37-70 every eight years, 13 deaths are avoided per million women per screening year. Each death avoided is balanced by 2800 preventive smears, 9 women referred to a gynaecology department and 4 minor treatment procedures (conserving treatment or exconisation). 25 invitations in a life-time avoids 27 deaths per million women per screening year but with 7300 preventive smears, 22 referrals and 8 small treatment procedures. Thus intensifying screening will not only result in diminishing returns of extra screening efforts, but also in increasing risk for women to undergo unnecessary (no invasive disease or death avoided) diagnostic and treatment procedures. The balance between beneficial and adverse effects deteriorates strongly when hysterectomies play an important part in the management of cervical intraepithelial neoplasia.

Economic aspects of cervical cancer screening.

The results of a cost-effectiveness analysis of cervical cancer screening in The Netherlands are reported, emphasizing the analysis of the costs of screening and consequent diagnosis and treatment. Many organized screening policies are evaluated, differing in age-range and interval between screens. The cost estimates are based on organization charts, file studies and tariffs. The costs of screening itself are by far the most important cost component. Screening increases the costs of diagnosis. Costs for primary treatment only rise for large screening policies. Screening causes savings in costs of terminal treatment, but these are small compared with the costs of screening. The costs per life-year gained for the most efficient policies amount to DFL 24,000 for the policy with 7 invitations per woman in a lifetime and rise considerably in case of more than 10 invitations. Cervical cancer screening appears to be less cost-effective than breast cancer screening, but compared with other services the results are comparatively good. Implementing one of the efficient organized screening policies and discouraging spontaneous screening beyond that schedule leads to considerable savings. Moreover, many organized policies which are not efficient are still superior to spontaneous screening.