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1.  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.
PMCID: PMC4855008  PMID: 27200089
2.  How to characterize the public health workforce based on essential public health operations? environmental public health workers in the Netherlands as an example 
BMC Public Health  2015;15:750.
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.
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.
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.
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.
PMCID: PMC4527300  PMID: 26246254
Public health workforce; Essential public health operations; Workforce enumeration; Workforce planning
3.  Patients' and urologists' preferences for prostate cancer treatment: a discrete choice experiment 
British Journal of Cancer  2013;109(3):633-640.
Patients' preferences are important for shared decision making. Therefore, we investigated patients' and urologists' preferences for treatment alternatives for early prostate cancer (PC).
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.
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.
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.
PMCID: PMC3738130  PMID: 23860533
prostate cancer treatment; preferences; patients; urologists
4.  Men's preferences for prostate cancer screening: a discrete choice experiment 
British Journal of Cancer  2013;108(3):533-541.
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.
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.
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.
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.
PMCID: PMC3593568  PMID: 23361056
prostate cancer screening; PSA; preferences; men; discrete choice experiment
5.  Preferences for colorectal cancer screening strategies: a discrete choice experiment 
British Journal of Cancer  2010;102(6):972-980.
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.
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).
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).
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.
PMCID: PMC2844026  PMID: 20197766
colorectal cancer; screening; preference; discrete choice experiment
6.  Short-term health-related quality of life consequences in a lung cancer CT screening trial (NELSON) 
British Journal of Cancer  2009;102(1):27-34.
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.
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.
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).
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.
PMCID: PMC2813757  PMID: 19935789
lung neoplasms; mass screening; quality of life; spiral computed tomography
7.  Nurse-led follow-up of patients after oesophageal or gastric cardia cancer surgery: a randomised trial 
British Journal of Cancer  2008;100(1):70-76.
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 vs €3800), 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.
PMCID: PMC2634677  PMID: 19066612
oesophageal cancer surgery; follow-up; quality of life; patient satisfaction; costs
8.  Patients’ preferences for osteoporosis drug treatment: a discrete choice experiment 
Osteoporosis International  2008;19(7):1029-1037.
Active case finding for osteoporosis is used to identify patients at high fracture risk who may benefit from preventive drug treatment. We investigated the relative weight that women place on various aspects of preventive drugs in a discrete choice experiment. Our patients said they were prepared to take preventive drugs even if side effects were expected.
Active case finding for osteoporosis is used to identify patients who may benefit from preventive drugs. We aimed to elicit the relative weight that patients place on various aspects of preventive drug treatment for osteoporosis.
We designed a discrete choice experiment, in which women had to choose between drug profiles that differed in five treatment attributes: effectiveness, side effects (nausea), total treatment duration, route of drug administration, and out-of-pocket costs. We included 120 women aged 60 years and older, identified by osteoporosis case finding in 34 general practices in the Netherlands. A conditional logit regression model was used to analyse the relative importance of treatment attributes, the trade-offs that women were willing to make between attributes, and their willingness to pay.
All treatment attributes proved to be important for women’s choices. A reduction of the relative 10-year risk of hip fracture by 40% or more by the drug was considered to compensate for nausea as a side effect. Women were prepared to pay an out-of-pocket contribution for the currently available drug treatment (bisphosphonate) if the fracture risk reduction was at least 12%.
Women identified by active osteoporosis case finding stated to be prepared to take preventive drugs, even if side effects were expected and some out-of-pocket contribution was required.
PMCID: PMC2440927  PMID: 18193329
Discrete choice experiment; Drug treatment; Osteoporosis; Preferences; Prevention
9.  Reliability and validity of health status measurement by the TAPQOL 
Archives of Disease in Childhood  2005;90(4):351-358.
Background: In addition to clinical measures in the evaluation of paediatric interventions, health related quality of life (HRQoL) is an important outcome. The TAPQOL (TNO-AZL Preschool children Quality of Life) was developed to measure HRQoL in preschool children. It is a generic instrument consisting of 12 scales that cover the domains physical, social, cognitive, and emotional functioning.
Aims: To evaluate the feasibility, score distribution, internal consistency, test-retest reliability, and discriminative and concurrent validity of the TAPQOL multi-item scales in preschool children, aged 2–48 months. Also to evaluate the feasibility, reliability, and validity separately for infants (2–12 months old) and toddlers (12–48 months old).
Methods: Parents of a random general population sample of 500 preschool children were sent a questionnaire by mail. A random subgroup of 159 parents who participated received a retest after two weeks.
Results: The response rate was 83% at the test and 75% at the retest. There were few missing answers. Six scales showed ceiling effects. Nine scales had Cronbach's alphas >0.70. In general, score distributions and Cronbach's alphas were comparable for infants and toddlers. Test-retest showed no significant differences in mean scale scores; two scales had intra-class correlations <0.50. Five scales showed significant differences between children with no conditions versus children with two or more parent reported chronic conditions.
Conclusion: Results showed that the TAPQOL is a feasible instrument to measure HRQoL and support the reliability and discriminative validity of the majority of its scales for infants as well as toddlers.
PMCID: PMC1720358  PMID: 15781921
10.  Reliability and validity of the short form of the child health questionnaire for parents (CHQ-PF28) in large random school based and general population samples 
Study objectives: This study assessed the feasibility, reliability, and validity of the 28 item short child health questionnaire parent form (CHQ-PF28) containing the same 13 scales, but only a subset of the items in the widely used 50 item CHQ-PF50.
Design: Questionnaires were sent to a random regional sample of 2040 parents of schoolchildren (4–13 years); in a random subgroup test-retest reliability was assessed (n = 234). Additionally, the study assessed CHQ-PF28 score distributions and internal consistencies in a nationwide general population sample of (parents of) children aged 4–11 (n = 2474) from Statistics Netherlands.
Main results: Response was 70%. In the school and general population samples seven scales showed ceiling effects. Both CHQ summary measures and one multi-item scale showed adequate internal consistency in both samples (Cronbach's α>0.70). One summary measure and one scale showed excellent test-retest reliability (intraclass correlation coefficient >0.70); seven scales showed moderate test-retest reliability (intraclass correlation coefficient 0.50–0.70). The CHQ could discriminate between a subgroup with no parent reported chronic conditions (n = 954) and subgroups with asthma (n = 134), frequent headaches (n = 42), and with problems with hearing (n = 38) (Cohen's effect sizes 0.12–0.92; p<0.05 for 39 of 42 comparisons).
Conclusions: This study showed that the CHQ-PF28 resulted in score distributions, and discriminative validity that are comparable to its longer counterpart, but that the internal consistency of most individual scales was low. In community health applications, the CHQ-PF28 may be an acceptable alternative for the longer CHQ-PF50 if the summary measures suffice and reliable estimates of each separate CHQ scale are not required.
PMCID: PMC1763365  PMID: 15598731
11.  Anxiety and depression after prostate cancer diagnosis and treatment: 5-year follow-up 
British Journal of Cancer  2006;94(8):1093-1098.
To document anxiety and depression from pretreatment till 5-year follow-up in 299 men with localized prostate cancer. To assess, if baseline scores were predictive for anxiety and depression at 1-year follow-up. Respondents completed four assessments (pretreatment, at 6 and 12 months, and at 5-year follow-up) on anxiety, depression and mental health. Respondents were subdivided according to therapy (prostatectomy or radiotherapy) and high vs low-anxiety. Pretreatment 28% of all patients were classified as ‘high-anxiety'; their average anxiety scores decreased significantly post-treatment, that is towards less anxiety. At all assessments, high-anxiety men treated by prostatectomy reported less depression than high-anxiety men treated by radiotherapy. Of men treated by radiotherapy, 27% reported clinical significant levels of depression while 20% is expected in a general population. The improvement in mental health at 6-months follow-up was statistically significant and clinically meaningful in all respondent groups. Sensitivity of anxiety at baseline as a screening tool was 71% for anxiety and 60% for symptoms of depression. We recommend clinicians to attempt early detection of patients at risk of high levels of anxiety and depression after prostate cancer diagnosis since prevalence is high. STAI-State can be a useful screening tool but needs further development.
PMCID: PMC2361242  PMID: 16622434
prostatic neoplasms; anxiety; depressive disorder; quality of life; screening; longitudinal studies
12.  Impact of screening for breast cancer in high-risk women on health-related quality of life 
British Journal of Cancer  2004;91(1):69-76.
PMCID: PMC2364757  PMID: 15199386
breast cancer; screening; quality of life; high risk

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