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review and survey among leaders of national or regional screening programmes, this study identified published and unpublished data on participation by socioeconomic status and ethnicity.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.

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.

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.

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.

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.

Long-term effects of lung cancer computed tomography screening on health-related quality of life: the NELSON trial.

The long-term effects of lung cancer computed tomography (CT) screening on health-related quality of life (HRQoL) have not yet been investigated. In the Dutch-Belgian Randomised Lung Cancer Screening Trial (NELSON trial), 1,466 participants received questionnaires before randomisation (T0), 2 months after baseline screening (screen group only; T1) and at 2-yr follow-up (T2). HRQoL was measured as generic HRQoL (12-item short-form questionnaire and EuroQoL questionnaire), anxiety (Spielberger State-Trait Anxiety Inventory) and lung cancer-specific distress (impact of event scale (IES)). Repeated measures of ANOVA were used to analyse differences between the screen and control groups, and between indeterminate (requiring a follow-up CT) and negative screening result groups. At T0 and T2 there were no significant differences in HRQoL scores over time between the screen and control groups, or between the indeterminate or negative second-round screening result group. There was a temporary increase in IES scores after an indeterminate baseline result (T0: mean 4.0 (95% CI 2.8-5.3); T1: mean 7.8 (95% CI 6.5-9.0); T2: mean 4.5 (95% CI 3.3-5.8)). At 2-yr follow-up, the HRQoL of screened subjects was similar to that of control subjects, the unfavourable short-term effects of an indeterminate baseline screening result had resolved and an indeterminate result at the second screening round had no impact on HRQoL.

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.

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.

Short-term health-related quality of life consequences in a lung cancer CT screening trial (NELSON).

BACKGROUND: In lung cancer CT screening, participants often have an indeterminate screening result at baseline requiring a follow-up CT. In subjects with either an indeterminate or a negative result after screening, we investigated whether health-related quality of life (HRQoL) changed over time and differed between groups in the short term. METHODS: A total of 733 participants in the NELSON trial received four questionnaires: T0, before randomisation; T1, 1 week before the baseline screening; T2, 1 day after the screening; and T3, 2 months after the screening results but before the 3-month follow-up CT. HRQoL was measured as generic HRQoL (the 12-item Short Form, SF-12; the EuroQol questionnaire, EQ-5D), anxiety (the Spielberger State-Trait Anxiety Inventory, STAI-6), and lung-cancer-specific distress (the Impact of Event Scale, IES). For analyses, repeated-measures analysis of variance was used, adjusted for covariates. RESULTS: Response to each questionnaire was 88% or higher. Scores on SF-12, EQ-5D, and STAI-6 showed no clinically relevant changes over time. At T3, IES scores that were clinically relevant increased after an indeterminate result, whereas these scores showed a significant decrease after a negative result. At T3, differences in IES scores between the two baseline result groups were both significant and clinically relevant (P<0.01). CONCLUSION: This longitudinal study among participants of a lung cancer screening programme showed that in the short term recipients of an indeterminate result experienced increased lung-cancer-specific distress, whereas the HRQoL changes after a negative baseline screening result may be interpreted as a relief.

Preferences for colorectal cancer screening strategies: a discrete choice experiment.

BACKGROUND: Guidelines underline the role of individual preferences in the selection of a screening test, as insufficient evidence is available to recommend one screening test over another. We conducted a study to determine the preferences of individuals and to predict uptake for colorectal cancer (CRC) screening programmes using various screening tests. METHODS: A discrete choice experiment (DCE) questionnaire was distributed among naive subjects, yet to be screened, and previously screened subjects, aged 50-75 years. Subjects were asked to choose between scenarios on the basis of faecal occult blood test (FOBT), flexible sigmoidoscopy (FS), total colonoscopy (TC) with various test-specific screening intervals and mortality reductions, and no screening (opt-out). RESULTS: In total, 489 out of 1498 (33%) screening-naïve subjects (52% male; mean age+/-s.d. 61+/-7 years) and 545 out of 769 (71%) previously screened subjects (52% male; mean age+/-s.d. 61+/-6 years) returned the questionnaire. The type of screening test, screening interval, and risk reduction of CRC-related mortality influenced subjects' preferences (all P<0.05). Screening-naive and previously screened subjects equally preferred 5-yearly FS and 10-yearly TC (P=0.24; P=0.11), but favoured both strategies to annual FOBT screening (all P-values <0.001) if, based on the literature, realistic risk reduction of CRC-related mortality was applied. Screening-naive and previously screened subjects were willing to undergo a 10-yearly TC instead of a 5-yearly FS to obtain an additional risk reduction of CRC-related mortality of 45% (P<0.001). CONCLUSION: These data provide insight into the extent by which interval and risk reduction of CRC-related mortality affect preferences for CRC screening tests. Assuming realistic test characteristics, subjects in the target population preferred endoscopic screening over FOBT screening, partly, due to the more favourable risk reduction of CRC-related mortality by endoscopy screening. Increasing the knowledge of potential screenees regarding risk reduction by different screening strategies is, therefore, warranted to prevent unrealistic expectations and to optimise informed choice.

Salpingotomy or salpingectomy in tubal ectopic pregnancy: what do women prefer?

There is an ongoing debate whether tubal ectopic pregnancy should be treated by salpingotomy or salpingectomy. It is unknown which treatment women prefer in view of the potentially better fertility outcome but disadvantages of salpingotomy. This study investigated women surgically treated for tubal ectopic pregnancy and subfertile women desiring pregnancy and their preferences for salpingotomy relative to salpingectomy by means of a web-based discrete choice experiment consisting of 16 choice sets. Scenarios representing salpingotomy differed in three attributes: intrauterine pregnancy (IUP) chance, risk of persistent trophoblast and risk of repeat ectopic pregnancy. An 'opt out' alternative, representing salpingectomy, was similar for every choice set. A multinomial logistic regression model was used to analyse relative importance of the attributes. This study showed that the negative effect of repeat ectopic pregnancy was 1.6 times stronger on the preference of women compared with the positive effect of the spontaneous IUP rate. For all women, the risk of persistent trophoblast was acceptable if compensated by a small rise in the spontaneous IUP rate. The conclusion was that women preferred avoiding a repeat ectopic pregnancy to a higher probability of a spontaneous IUP in the surgical treatment of tubal ectopic pregnancy. An ectopic pregnancy occurs when a fertilized egg gets stuck inside the Fallopian tube where it starts growing instead of passing on to the uterus. This may lead to serious problems, such as internal bleeding and pain. Therefore, in the majority of women, it is necessary to remove the ectopic pregnancy by means of an operation. Two types of surgery are being used in removing the ectopic pregnancy. A conservative approach, salpingotomy, preserves the tube but bears the risk of incomplete removal of the pregnancy tissue (persistent trophoblast), which then needs additional treatment, and of a repeat ectopic pregnancy in the same tube in the future. A radical approach, salpingectomy, bears no risk of persistent trophoblast and limits the risk of repeat tubal pregnancy, but leaves only one tube for reproductive capacity. It is unknown which type of operation is better, especially for future fertility. We investigated women's preferences between these two treatments for ectopic pregnancy, i.e. does a better fertility prognosis outweigh the potential disadvantages of persistent trophoblast and an increased risk for ectopic pregnancy in the future? The study results show in the surgical treatment of tubal ectopic pregnancy that women preferred avoiding a repeat ectopic pregnancy to gaining a higher chance of a spontaneous intrauterine pregnancy. The risk of additional treatment in the case of persistent trophoblast after salpingotomy was acceptable if compensated by a small rise in intrauterine pregnancy rate.

Nurse-led follow-up of patients after oesophageal or gastric cardia cancer surgery: a randomised trial.

Between January 2004 and February 2006, 109 patients after intentionally curative surgery for oesophageal or gastric cardia cancer were randomised to standard follow-up of surgeons at the outpatient clinic (standard follow-up; n=55) or by regular home visits of a specialist nurse (nurse-led follow-up; n=54). Longitudinal data on generic (EuroQuol-5D, European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30) and disease-specific quality of life (EORTC QLQ-OES18), patient satisfaction and costs were collected at baseline and at 6 weeks and 4, 7 and 13 months afterwards. We found largely similar quality-of-life scores in the two follow-up groups over time. At 4 and 7 months, slightly more improvement on the EQ-VAS was noted in the nurse-led compared with the standard follow-up group (P=0.13 and 0.12, respectively). Small differences were also found in patient satisfaction between the two groups (P=0.14), with spouses being more satisfied with nurse-led follow-up (P=0.03). No differences were found in most medical outcomes. However, body weight of patients of the standard follow-up group deteriorated slightly (P=0.04), whereas body weight of patients of the nurse-led follow-up group remained stable. Medical costs were lower in the nurse-led follow-up group (2600 euro vs 3800 euro), however, due to the large variation between patients, this was not statistically significant (P=0.11). A cost effectiveness acceptability curve showed that the probability of being cost effective for costs per one point gain in general quality-of-life exceeded 90 and 75% after 4 and 13 months of follow-up, respectively. Nurse-led follow-up at home does not adversely affect quality of life or satisfaction of patients compared with standard follow-up by clinicians at the outpatient clinic. This type of care is very likely to be more cost effective than physician-led follow-up.

Informed participation in a randomised controlled trial of computed tomography screening for lung cancer.

The actual lung cancer (screening) knowledge, attitudes, risk perceptions, reasons to participate in or decline participation, and informed decisions of subjects who decided to or decided not to participate in the Dutch-Belgian randomised controlled trial for lung cancer screening in high-risk subjects (the NELSON trial) were evaluated. A total of 2,500 high-risk subjects were asked to complete a questionnaire 3 weeks after they had received a brochure with information about the trial. Differences in knowledge, attitude and risk perception between participants and nonparticipants were analysed with logistic regression analyses adjusted for sex and smoking status. The questionnaire response of trial participants was 80% (n = 889) whereas the response of nonparticipants was low (7%, n = 97) and selective. Participants' responses to knowledge items on lung cancer as a disease were on average more often correct (mean+/-sd 68+/-17%) than items on lung cancer screening (49+/-29%). Participants had adequate knowledge on lung cancer screening (51%) more often than the nonparticipants (38%; p = 0.009). Of the decisions regarding participation, 49% were uninformed, mainly due to insufficient knowledge. Most of the participants (99%) and 64% of the nonparticipants had a positive attitude towards lung cancer screening. Additional efforts are required to improve the knowledge and understanding of subjects who are in the process of decision-making regarding participation in a lung cancer screening trial.

Reliability and validity of the Dutch translated Aberdeen Varicose Vein Questionnaire.

OBJECTIVE: To evaluate reliability and validity of the Dutch translated Aberdeen Varicose Vein Questionnaire (AVVQ) for measuring health related quality of life (HR-QOL) in patients with venous disease in the lower limb. METHODS: The AVVQ consists of 13 questions related varicose veins. This study assessed feasibility, reliability and validity of the Dutch translated AVVQ in a sample of 145 patients with venous disease of the leg. Test and retest of the Dutch translated AVVQ were performed within a 2 week interval. RESULTS: There was a high test (99%) and retest (97%) response. Feasibility; AVVQ showed few missing answers (0.6%) and non-unique answers (0.2%). Regarding internal consistency; Cronbach's alpha exceeded 0.7 indicating a high level of concordance between the AVVQ questions (alpha=0.76). Test-retest reliability; Spearman's rho showed a significant strong association between test and retest scores (rho=0.87). Discriminative validity; AVVQ score was able to differentiate between subgroups of patients with different severity of venous disease according to the CEAP classification (Mann-Whitney U test, p<0.01). CONCLUSIONS: This study supports applications of the Dutch AVVQ in HR-QOL measurement in patients with venous disease in the Netherlands and the Flemish speaking part of Belgium.

Uptake of faecal occult blood test colorectal cancer screening by different ethnic groups in the Netherlands.

We investigated the participation rates in CRC screening with a FOBT among various ethnic groups in the Netherlands. Individuals (n = 10 054) were invited by mail and grouped by country of birth. Overall participation rate was 49%. Participation among ethnic minority groups was significantly lower than among ethnic Dutch [adjusted OR for participation: Middle- or Central-East 0.25 (0.18-0.34), African 0.48 (0.34-0.67), Surinamese and Antillean 0.51 (0.43-0.61), South- or South-East Asian 0.56 (0.46-0.69) and 'other Western' 0.78 (0.63-0.96)]. Further studies are needed to explore whether ethnic minority groups are not reached or that low uptake is determined by other causes.

[The 1996 revision of the Dutch cervical cancer screening programme: increased coverage, fewer repeat smears and less opportunistic screening]. / Herziening bevolkingsonderzoek op baarmoederhalskanker 1996: hogere dekkingsgraad, minder herhalingsuitstrijkjes en minder opportunistische screening.

OBJECTIVE: Comparison of the indicators of effectiveness and efficiency of the Dutch national cervical cancerscreening programme in 2003 and 1994, the last year before implementation of important changes in the medical and organisational guidelines. DESIGN: Descriptive. METHOD: Data on all Pap smears made in 1994 and 2003 were retrieved from the Pathologic Anatomical National Automated Archive (PALGA), together with the matching cytological and histological follow-up until April 2004. In order to calculate the 5-year coverage, the number of women that had had a smear taken was placed in the numerator and divided by the number of women that had been invited for the screening programme during those 5 years. RESULTS: The 5-year coverage in the age range 30-64 years increased from 69 in 1994 to 77% in 2003. The percentage of smears resulting in a recommendation for a repeat smear decreased from 10 to 2. The percentage of timely compliance with recommendations for a repeat smear increased from 47 to 86, while that of smears with an immediate referral recommendation remained the same (about go). There was a sharp decrease in screening outside of the target-age range and screening with too short an interval. As a consequence, despite the higher coverage, the total number of smears decreased. CONCLUSION: The changes in the Dutch cervical cancerscreening programme in 1996 with regard to participation, the number of and compliance with recommendations for repeat smears, and screening activity outside of the target group were accompanied by significant improvements in agreement with the goals of the revision. The potential consequences for the effectiveness of the screening programme (reduction of cervical cancer mortality) will become apparent in the years to come.