Socioeconomic and ethnic inequities within organised colorectal cancer screening programmes worldwide.

OBJECTIVE: Colorectal cancer (CRC) screening programmes can reduce CRC mortality. However, the implementation of a screening programme may create or exacerbate socioeconomic and ethnic health inequities if participation varies by subgroup. We determined which organised programmes characterise participation inequities by socioeconomic and ethnic subgroups, and assessed the variation in subgroup participation among programmes collecting group-specific data. DESIGN: Employing a literature review and survey among leaders of national or regional screening programmes, this study identified published and unpublished data on participation by socioeconomic status and ethnicity. We assessed programmes offering faecal occult blood tests (FOBT) for screening. Primary outcome was screening participation rate. RESULTS: Across 24 organised FOBT-screening programmes meeting the inclusion criteria, participation rates ranged from 21% to 73%. Most programmes (13/24, 54%) did not collect data on participation by socioeconomic status and ethnicity. Among the 11 programmes with data on participation by socioeconomic status, 90% (28/31 publications) reported lower participation among lower socioeconomic groups. Differences across socioeconomic gradients were moderate (66% vs 71%) to severe (35% vs 61%). Only six programmes reported participation results by ethnicity. Ethnic differences were moderate, though only limited data were available for evaluation. CONCLUSIONS: Across organised CRC screening programmes worldwide, variation in participation by socioeconomic status and ethnicity is often not assessed. However, when measured, marked disparities in participation by socioeconomic status have been observed. Limited data were available to assess inequities by ethnicity. To avoid exacerbating health inequities, screening programmes should systematically monitor participation by socioeconomic status and ethnicity, and investigate and address determinants of low participation.

Ethnic differences in colon cancer care in the Netherlands: a nationwide registry-based study.

BACKGROUND: Ethnic differences in colon cancer (CC) care were shown in the United States, but results are not directly applicable to European countries due to fundamental healthcare system differences. This is the first study addressing ethnic differences in treatment and survival for CC in the Netherlands. METHODS: Data of 101,882 patients diagnosed with CC in 1996-2011 were selected from the Netherlands Cancer Registry and linked to databases from Statistics Netherlands. Ethnic differences in lymph node (LN) evaluation, anastomotic leakage and adjuvant chemotherapy were analysed using stepwise logistic regression models. Stepwise Cox regression was used to examine the influence of ethnic differences in adjuvant chemotherapy on 5-year all-cause and colorectal cancer-specific survival. RESULTS: Adequate LN evaluation was significantly more likely for patients from 'other Western' countries than for the Dutch (OR 1.09; 95% CI 1.01-1.16). 'Other Western' patients had a significantly higher risk of anastomotic leakage after resection (OR 1.24; 95% CI 1.05-1.47). Patients of Moroccan origin were significantly less likely to receive adjuvant chemotherapy (OR 0.27; 95% CI 0.13-0.59). Ethnic differences were not fully explained by differences in socioeconomic and hospital-related characteristics. The higher 5-year all-cause mortality of Moroccan patients (HR 1.64; 95% CI 1.03-2.61) was statistically explained by differences in adjuvant chemotherapy receipt. CONCLUSION: These results suggest the presence of ethnic inequalities in CC care in the Netherlands. We recommend further analysis of the role of comorbidity, communication in patient-provider interaction and patients' health literacy when looking at ethnic differences in treatment for CC.

Cardiovascular disease risk and secondary prevention of cardiovascular disease among patients with low health literacy.

OBJECTIVE: To explore the association between health literacy and the risk of cardiovascular disease (CVD), and to assess the differential effects by health literacy level of a nurse-coordinated secondary prevention program (NCPP) in patients with coronary artery disease (CAD). METHODS: Data were collected in two medical centres participating in the RESPONSE trial (Randomised Evaluation of Secondary Prevention by Outpatient Nurse SpEcialists). CVD risk profiles were assessed at baseline and 12-month follow-up using the Systematic Coronary Risk Evaluation (SCORE). Health literacy was assessed by the short Rapid Estimate of Adult Literacy in Medicine (REALM-D) and the Newest Vital Sign (NVS-D); self-reported health literacy was evaluated by the Set of Brief Screening Questions (SBSQ-D). RESULTS: Among 201 CAD patients, 18% exhibited reading difficulties, 52% had difficulty understanding and applying written information, and 5% scored low on self-reported health literacy. Patients with low NVS-D scores had a higher CVD risk [mean SCORE 5.2 (SD 4.8) versus 3.3 (SD 4.1), p < 0.01]. Nurse-coordinated care seemed to reduce CVD risk irrespective of health literacy levels without significant differences. CONCLUSION: Inadequate health literacy is prevalent in CAD patients in the Netherlands, and is associated with less favourable CVD risk profiles. Where many other forms of CVD prevention fail, nurse-coordinated care seems to be effective among patients with inadequate health literacy.

[Enumerating the preventive youth health care workforce: size, composition and regional variation in the Netherlands]. / Capaciteit van de jeugdgezondheidszorg in Nederland.

OBJECTIVE: The progress in workforce planning in preventive youth health care (YHC) is hampered by a lack of data on the current workforce. This study aimed to enumerate the Dutch YHC workforce. To understand regional variations in workforce capacity we compared these with the workforce capacity and the number of children and indicators of YHC need per region. METHODS: A national survey was conducted using online questionnaires based on WHO essential public health operations among all YHC workers. Respondents (n=3220) were recruited through organisations involved in YHC (participation: 88%). RESULTS: The YHC workforce is multi-disciplinary, 62% had > 10 years working experience within YHC and only small regional variations in composition existed. The number of children per YHC professional varied between regions (range: 688-1007). All essential public health operations were provided. Regional differences in the number of children per YHC professional were unrelated to the indicators of YHC need. CONCLUSION: The essential public health operations provided by the YHC workforce and the regional variations in children per YHC professional were not in line with indicators of YHC needs, indicating room for improvement of YHC workforce planning. The methodology applied in this study is probably relevant for use in other countries.

[Healthcare for teenagers: are we working together?]. / Gezondheidszorg voor tieners: trekken we samen op?

There are about 1.8 million children between 10 and 18 years of age in the Netherlands in 2016. These teenagers account for approximately 10% of the total population. Teenagers are relatively healthy and do not make much use of curative care. However, they are an important group in terms of public health, because a basis for good health in later life is created in the teenage years. Good health in teenagers is also important for education, relationships and employment, and their health has an influence on the health of the next generation. Child and adolescent healthcare plays an important part in preventive care for teenagers. Better cooperation and exchange of information between paediatricians, specialists in child and adolescent healthcare and general practitioners are important in order to optimise care for teenagers.

[We are living longer, but are these additional years spent in good health?]. / We leven langer, maar wat zijn dat voor jaren?

Life expectancy in western countries has increased continuously over recent years. The issue at stake is if this rise includes healthy years. The answer depends on the health indicator used, e.g., perceived health, disability, or cognitive impairment. A study by Jagger et al. (2016) provides evidence for an increase in life expectancy without cognitive impairment and an absolute compression of cognitive impairment between 1991 and 2011. Information on life expectancy without cognitive impairment is not yet available for the Netherlands. Similar to England, Dutch trends in life expectancy in excellent or good self-perceived health and in life expectancy without severe disability are favourable, although less pronouncedly so. Dutch and English data suggest that the additional years lived by the population are at least partly spent in good health.

Knowledge and Informed Decision-Making about Population-Based Colorectal Cancer Screening Participation in Groups with Low and Adequate Health Literacy.

Objective. To analyze and compare decision-relevant knowledge, decisional conflict, and informed decision-making about colorectal cancer (CRC) screening participation between potential screening participants with low and adequate health literacy (HL), defined as the skills to access, understand, and apply information to make informed decisions about health. Methods. Survey including 71 individuals with low HL and 70 with adequate HL, all eligible for the Dutch organized CRC screening program. Knowledge, attitude, intention to participate, and decisional conflict were assessed after reading the standard information materials. HL was assessed using the Short Assessment of Health Literacy in Dutch. Informed decision-making was analyzed by the multidimensional measure of informed choice. Results. 64% of the study population had adequate knowledge of CRC and CRC screening (low HL 43/71 (61%), adequate HL 47/70 (67%), p > 0.05). 57% were informed decision-makers (low HL 34/71 (55%), adequate HL 39/70 (58%), p > 0.05). Intention to participate was 89% (low HL 63/71 (89%), adequate HL 63/70 (90%)). Respondents with low HL experienced significantly more decisional conflict (25.8 versus 16.1; p = 0.00). Conclusion. Informed decision-making about CRC screening participation was suboptimal among both individuals with low HL and individuals with adequate HL. Further research is required to develop and implement effective strategies to convey decision-relevant knowledge about CRC screening to all screening invitees.

How to characterize the public health workforce based on essential public health operations? environmental public health workers in the Netherlands as an example.

BACKGROUND: Public health workforce planning and policy development require adequate data on the public health workforce and the services provided. If existing data sources do not contain the necessary information, or apply to part of the workforce only, primary data collection is required. The aim of this study was to develop a strategy to enumerate and characterize the public health workforce and the provision of essential public health operations (EPHOs), and apply this to the environmental public health workforce in the Netherlands as an example. METHODS: We specified WHO's EPHOs for environmental public health and developed an online questionnaire to assess individual involvement in these. Recruitment was a two-layered process. Through organisations with potential involvement in environmental public health, we invited environmental public health workers (n = 472) to participate in a national survey. Existing benchmark data and a group of national environmental public health experts provided opportunities for partial validity checks. RESULTS: The questionnaire was well accepted and available benchmark data on physicians supported the results of this study regarding the medical part of the workforce. Experts on environmental public health recognized the present results on the provision of EPHOs as a reasonable reflection of the actual situation in practice. All EPHOs were provided by an experienced, highly educated and multidisciplinary workforce. 27 % of the total full-time equivalents (FTEs) was spent on EPHO 'assuring governance for health'. Only 4 % was spent on 'health protection'. The total FTEs were estimated as 0.66 /100,000 inhabitants. CONCLUSIONS: Characterisation of the public health workforce is feasible by identification of relevant organisations and individual workers on the basis of EPHOs, and obtaining information from those individuals by questionnaire. Critical factors include the operationalization of the EPHOS into the field of study, the selection and recruitment of eligible organisations and the response rate within organisations.. When existing professional registries are incomplete or do not exist, this strategy may provide a start to enumerate the quantity and quality of the public health within or across countries.

Transfusion policy after severe postpartum haemorrhage: a randomised non-inferiority trial.

OBJECTIVE: To assess the effect of red blood cell (RBC) transfusion on quality of life in acutely anaemic women after postpartum haemorrhage. DESIGN: Randomised non-inferiority trial. SETTING: Thirty-seven Dutch university and general hospitals. POPULATION: Women with acute anaemia (haemoglobin 4.8-7.9 g/dl [3.0-4.9 mmol/l] 12-24 hours postpartum) without severe anaemic symptoms or severe comorbidities. METHODS: Women were allocated to RBC transfusion or non-intervention. MAIN OUTCOME MEASURES: Primary outcome was physical fatigue 3 days postpartum (Multidimensional Fatigue Inventory, scale 4-20; 20 represents maximal fatigue). Non-inferiority was demonstrated if the physical fatigue difference between study arms was maximal 1.3. Secondary outcomes were health-related quality of life and physical complications. Health-related quality of life questionnaires were completed at five time-points until 6 weeks postpartum. RESULTS: In all, 521 women were randomised to non-intervention (n = 262) or RBC transfusion (n = 259). Mean physical fatigue score at day 3 postpartum, adjusted for baseline and mode of delivery, was 0.8 lower in the RBC transfusion arm (95% confidence interval: 0.1-1.5, P = 0.02) and at 1 week postpartum was 1.06 lower (95% confidence interval: 0.3-1.8, P = 0.01). A median of two RBC units was transfused in the RBC transfusion arm. In the non-intervention arm, 33 women received RBC transfusion, mainly because of anaemic symptoms. Physical complications were comparable. CONCLUSIONS: Statistically, non-inferiority could not be demonstrated as the confidence interval crossed the non-inferiority boundary. Nevertheless, with only a small difference in physical fatigue and no differences in secondary outcomes, implementation of restrictive management seems clinically justified.

Patients' and urologists' preferences for prostate cancer treatment: a discrete choice experiment.

BACKGROUND: Patients' preferences are important for shared decision making. Therefore, we investigated patients' and urologists' preferences for treatment alternatives for early prostate cancer (PC). METHODS: A discrete choice experiment was conducted among 150 patients who were waiting for their biopsy results, and 150 urologists. Regression analysis was used to determine patients' and urologists' stated preferences using scenarios based on PC treatment modality (radiotherapy, surgery, and active surveillance (AS)), and risks of urinary incontinence and erectile dysfunction. RESULTS: The response rate was 110 out of 150 (73%) for patients and 50 out of 150 (33%) for urologists. Risk of urinary incontinence was an important determinant of both patients' and urologists' stated preferences for PC treatment (P<0.05). Treatment modality also influenced patients' stated preferences (P<0.05), whereas the risk of erectile dysfunction due to radiotherapy was mainly important to urologists (P<0.05). Both patients and urologists preferred AS to radical treatment, with the exception of patients with anxious/depressed feelings who preferred radical treatment to AS. CONCLUSION: Although patients and urologists generally may prefer similar treatments for PC, they showed different trade-offs between various specific treatment aspects. This implies that urologists need to be aware of potential differences compared with the patient's perspective on treatment decisions in shared decision making on PC treatment.

FIT false-positives in colorectal cancer screening experience psychological distress up to 6 weeks after colonoscopy.

PURPOSE: Screening programs for colorectal cancer aim at reducing cancer mortality. We assessed psychological effects of being invited to an immunochemical fecal test (FIT)-based screening program. METHODS: Asymptomatic persons aged 50-74 years were invited to a Dutch screening pilot. The Psychological Consequences Questionnaire (PCQ) was used to measure the psychological effects of screening. Screen positives had two additional measurements: before undergoing the colonoscopy and 4 weeks after receiving the colonoscopy findings. RESULTS: A number of 3,828 invitees (46 % male, mean age 60 years) completed the first PCQ. FIT positives had a higher mean total PCQ score (8.32, SD 8.84; score range 0-36) than those who declined participation (3.72, SD 6.30); participants still waiting for their FIT result had a mean score of 2.74 (SD 5.11), and those with a negative FIT result had the lowest score (2.06, SD 4.43) (p < 0.001). In the 373 FIT positives who underwent colonoscopy, 195 completed the pre-colonoscopy questionnaire and 253, the post-colonoscopy questionnaire. Mean total, physical, and social PCQ scores had decreased significantly between the first questionnaire and the pre-colonoscopy one, but scores on the emotional subscale did not. In false-positives, mean total, physical, and emotional PCQ scores decreased significantly, while in true-positives, a significant decrease in mean emotional PCQ score was observed. CONCLUSION: Psychological consequences for invitees to a Dutch FIT-based colorectal cancer screening pilot differ, depending on timing and FIT result. FIT positives are more distressed than FIT negatives. FIT positives still experience psychological distress 6 weeks after a normal colonoscopy.

Men's preferences for prostate cancer screening: a discrete choice experiment.

BACKGROUND: Screening for prostate cancer (PC) may save lives, but overdiagnosis and overtreatment are serious drawbacks. We aimed to determine men's preferences for PC screening, and to elicit the trade-offs they make. METHODS: A discrete choice experiment (DCE) was conducted among a population-based random sample of 1000 elderly men (55-75-years-old). Trade-offs were quantified with a panel latent class model between five PC screening aspects: risk reduction of PC-related death, screening interval, risk of unnecessary biopsies, risk of unnecessary treatments, and out-of-pocket costs. RESULTS: The response rate was 46% (459/1000). Men were willing to trade-off 2.0% (CI: 1.6%-2.4%) or 1.8% (CI: 1.3%-2.3%) risk reduction of PC-related death to decrease their risk of unnecessary treatment or biopsy with 10%, respectively. They were willing to pay €188 per year (CI: €141-€258) to reduce their relative risk of PC-related death with 10%. Preference heterogeneity was substantial, with men with higher educational levels having a lower probability to opt for PC screening than men with lower educational levels. CONCLUSION: Men were willing to trade-off some risk reduction of PC-related death to be relieved of the burden of biopsies or unnecessary treatments. Increasing knowledge on overdiagnosis and overtreatment, especially for men with lower educational levels, is warranted to prevent unrealistic expectations from PC screening.

Having a Pap smear, quality of life before and after cervical screening: a questionnaire study.

OBJECTIVE: To assess the health-related quality of life (HRQoL) impact of cervical cancer screening in women with normal test results. DESIGN: Questionnaire study. SETTING: Maastricht, the Netherlands. POPULATION: A cohort of 789 women were followed from screening invitation until after the receipt of screening results. A female age-matched reference group (n=567) was included. METHODS: Questionnaires were sent to the home address of the women before screening, after screening, and again with the screening results. MAIN OUTCOME MEASURES: Generic HRQoL (SF-12, EQ-5D), generic anxiety (STAI-6), screen-specific anxiety (PCQ), and potential symptoms and feelings related to the smear-taking procedure. RESULTS: A total of 60% of screening participants completed questionnaire 1(n=924): 803 of these women granted permission to access their files; 789 of these 803 women had normal test results (Pap 1), and were included in the analyses. Generic HRQoL (SF-12, EQ-5D) and anxiety (STAI-6) scores were similar in the study and reference groups. Before screening, after screening, and also after the receipt of test results, screening participants reported less screen-specific anxiety (PCQ, P<0.001) than the reference group (n=567), with differences indicating clinical relevance. 19% of screening participants were bothered by feelings of shame, pain, inconvenience, or nervousness during smear taking, and 8 and 5% of women experienced lower abdominal pain, vaginal bleeding, discharge, or urinary problems for 2-3 and 4-7 days, respectively, following the Pap smear. CONCLUSION: The reduced levels of screen-specific anxiety in screening participants, possibly indicating reassurance, are worthwhile addressing in more depth. We conclude that although considerable numbers of women reported unpleasant effects, there were no adverse HRQoL consequences of cervical screening in women with normal test results.

Issues to address in burn care for ethnic minority children: a qualitative study of the experiences of health care staff.

INTRODUCTION: Numerous studies have shown that ethnic minority children in the developed world are at greater risk of sustaining burns compared to children from non-ethnic minority backgrounds. However, little is known about the experiences of hospital health care staff with ethnic minority children and parents. A qualitative interview study was conducted to gain more insight into burn care for ethnic minority children and the potential challenges this presents. METHODS: Semi-structured interviews on burn care for ethnic minority children were conducted in 2009 with health care staff (N=17) working in two burn centers in the Netherlands. Interviews were transcribed and analyzed using a framework method. RESULTS: Health care staff identified the following issues in burn care for ethnic minority children and their parents: (1) linguistic barriers to communication with parents about pressure garments, dressing changes, skin grafting procedures, and psychosocial support; (2) biological/genetic features of differing pigmentation of skin and skin healing; (3) cultural differences between parents and health care staff; (4) insecurity or irritation about linguistic and cultural barriers. CONCLUSIONS: Burn health care staff should have knowledge of biological/genetic features of dark skin, awareness of cultural differences, and transcultural communication skills to deliver culturally competent care tailored to the needs of ethnic minority children and their parents.

Applicability of internationally available health literacy measures in the Netherlands.

Health literacy measures for use in clinical-epidemiological research have all been developed outside Europe. In the absence of validated Dutch measures, we evaluated the cross-cultural applicability of the Rapid Estimate of Adult Literacy in Medicine (REALM), the Newest Vital Sign (NVS), the Set of Brief Screening Questions (SBSQ), and the measure of Functional Communicative and Critical Health Literacy (FCCHL). Each measure was translated into Dutch following standardized procedures. We assessed feasibility, internal consistency, and construct validity among patients with coronary artery disease (n = 201) and patients with diabetes type 2 (n = 88). Patients expressed most problems in responding to the NVS-D. They were not familiar with the type of food label and had difficulties calculating in portions instead of grams. The FCCHL-D items seemed too theoretical for many patients. Cronbach's alpha was acceptable for all measures. Correlation patterns between the measures were moderately coherent with a priori hypotheses. All translated measures were able to distinguish between high- and low-educated groups of patients, with the NVS-D performing best. Despite reasonable psychometric properties as demonstrated so far, these measures need to be further developed in order to increase applicability for assessing health literacy in clinical-epidemiological research in the Netherlands.

Quality of life after burns in childhood (5-15 years): children experience substantial problems.

The aim of our study was to assess prevalence and correlates related to sub optimal outcome after pediatric burns and to make a comparison with pediatric injuries not related to burns. We conducted a cross-sectional study on quality of life (QOL) after burns in a sample (n=138; median 24 months post-burn) of Dutch and Flemish children (5-15 years) with an admission to a burn center. QOL was assessed with the Burn Outcomes Questionnaire (BOQ). The generic EuroQol-5D was used to allow for a comparison with children after injuries not related to burns. More than half of the children had long-term limitations. According to the BOQ, children frequently (>50%) experienced sub optimal functioning on 5 out of 12 dimensions, concerning 'appearance', 'parental concern', 'itch', 'emotional health' and 'satisfaction with current state'. Children with a high total burned surface area (TBSA ≥10%) showed significantly more sub optimal functioning on 'upper extremity function' (OR=5.3; ≥20% TBSA), 'appearance' (OR=5.5; ≥10-20% TBSA), 'satisfaction with current state' (OR=3.4; ≥10-20% TBSA) and 'parental concern' (OR=3.4; ≥10-20% TBSA), compared to children with less than 10% TBSA. Burn victims at 9 months post-injury appeared to be worse off at several health dimensions. After 24 months generic quality of life of in pediatric burns was more comparable to pediatric injuries not related to burns. Children after burns experience substantial problems, mainly on itch and appearance and several psychosocial dimensions. More extensive burns are related to sub optimal functioning. These problems are in part specific for burns and not picked up by generic measures.

Medium-term cost analysis of breast reconstructions in a single Dutch centre: a comparison of implants, implants preceded by tissue expansion, LD transpositions and DIEP flaps.

BACKGROUND: Free flap breast reconstruction (BR) is generally believed to be more expensive than implant BR, but costs were previously shown to level out over time due to complications and re-operations. The aim of this study was to assess the economic implications of four BR techniques: silicone prosthesis (SP), implant preceded by tissue expansion (TE/SP), latissimus dorsi transposition with or without implant (LD ± SP) and deep inferior epigastric perforator (DIEP) flap. METHODS: A prospective historic cohort study was performed to evaluate intramural medical costs in 427 patients, who had undergone BR between 2002 and 2009. Short- and medium-term complications were incorporated. In addition, 58 patients, who had recently undergone BR, participated in a questionnaire study to prospectively evaluate extramural medical and non-medical costs. Estimates of mean short- and medium-term costs are presented per patient. RESULTS: Intramural medical costs for BR and short-term complications for unilateral DIEP flaps (€ 12,848) and TE/SP reconstructions (€ 12,400) were significantly higher than those for LD ± SP reconstructions (€ 5804), which, in turn, were more expensive than SP reconstructions (€ 4731). In bilateral cases, costs of TE/SP (€ 12,723) and LD ± SP (€ 10,760) reconstructions were comparable, while DIEP flaps (€ 15,747) were significantly more expensive and SP reconstructions were significantly cheaper (€ 6784). Overall, the medium-term costs for complications and additional operations were not significantly different (€ 3017-€ 4503). Extramural medical costs and non-medical costs were approximately € 9300 per stage, regardless of technique. CONCLUSIONS: Differences in short-term costs between techniques did not level out during follow-up and SP reconstructions remained least expensive. Single-stage SP reconstructions, however, are not suitable for all patients due to high complication rates. Definite implant placement is therefore increasingly preceded by tissue expansion at more comparable costs to autologous BR. Incorporation of non-medical costs into the cost analysis would render two-stage procedures more costly than autologous BR. To achieve the optimal result, careful patient selection is critical. Only in select cases where two options are equally applicable, cost comparison becomes a valid argument for treatment selection.

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.