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review and survey among leaders of national or regional screening programmes, this study identified published and unpublished data on participation by socioeconomic status and ethnicity.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

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.

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.

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.

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.

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.

Screening for colorectal cancer: comparison of perceived test burden of guaiac-based faecal occult blood test, faecal immunochemical test and flexible sigmoidoscopy.

BACKGROUND: Perceived burden of colorectal cancer (CRC) screening is an important determinant of participation in subsequent screening rounds and therefore crucial for the effectiveness of a screening programme. This study determined differences in perceived burden and willingness to return for a second screening round among participants of a randomised population-based trial comparing a guaiac-based faecal occult blood test (gFOBT), a faecal immunochemical test (FIT) and flexible sigmoidoscopy (FS) screening. METHODS: A representative sample of the Dutch population (aged 50-74years) was randomised to be invited for gFOBT, FIT and FS screening. A random sample of participants of each group was asked to complete a questionnaire about test burden and willingness to return for CRC screening. RESULTS: In total 402/481 (84%) gFOBT, 530/659 (80%) FIT and 852/1124 (76%) FS screenees returned the questionnaire. The test was reported as burdensome by 2.5% of gFOBT, 1.4% of FIT and 12.9% of FS screenees (comparing gFOBT versus FIT p=0.05; versus FS p<0.001). In total 94.1% of gFOBT, 94.0% of FIT and 83.8% of FS screenees were willing to attend successive screening rounds (comparing gFOBT versus FIT p=0.84; versus FS p<0.001). Women reported more burden during FS screening than men (18.2% versus 7.7%; p<0.001). CONCLUSIONS: FIT slightly outperforms gFOBT with a lower level of reported discomfort and overall burden. Both FOBTs are better accepted than FS screening. All three tests have a high level of acceptance, which may affect uptake of subsequent screening rounds and should be taken into consideration before implementing a CRC screening programme.

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.

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.

What determines individuals' preferences for colorectal cancer screening programmes? A discrete choice experiment.

INTRODUCTION: In many countries uptake of colorectal cancer (CRC) screening remains low. AIM: To assess how procedural characteristics of CRC screening programmes determine preferences for participation and how individuals weigh these against the perceived benefits from participation in CRC screening. METHODS: A discrete choice experiment was conducted among subjects in the age group of 50-75 years, including both screening-naïve subjects and participants of a CRC screening programme. Subjects were asked on their preferences for aspects of CRC screening programmes using scenarios based on pain, risk of complications, screening location, preparation, duration of procedure, screening interval and risk reduction of CRC-related death. RESULTS: The response was 31% (156/500) for screening-naïve and 57% (124/210) for CRC screening participants. All aspects proved to significantly influence the respondents' preferences. For both groups combined, respondents required an additional relative risk reduction of CRC-related death by a screening programme of 1% for every additional 10 min of duration, 5% in order to expose themselves to a small risk of complications, 10% to accept mild pain, 10% to undergo preparation with an enema, 12% to use 0.75l of oral preparation combined with 12h fasting and 32% to use an extensive bowel preparation. Screening intervals shorter than 10 years were significantly preferred to a 10-year screening interval. CONCLUSION: This study shows that especially type of bowel preparation, risk reduction of CRC related death and length of screening interval influence CRC screening preferences. Furthermore, improving awareness on CRC mortality reduction by CRC screening may increase uptake.

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.

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.

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.

[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.