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Aims: Many older persons do not think of themselves as "patients" but as persons wishing to live as actively as possible for as long as possible. However, most health-related quality of life (HRQL) measures were developed for use with clinical populations. The aim of this project was to fill that gap and to develop, for international use, a measure of what matters to older persons as they age and seek to remain as active as possible, Older Persons for Active Living (OPAL)., Methods: For content development, interviews about active living were conducted with older persons from Canada, USA, UK, and the Netherlands in English, French, Spanish and Dutch, respectively with subsequent thematic analysis and harmonization., Results: Analyses of transcripts from 148 older persons revealed that active living was a "way of being" and not merely doing activities. Saturation was reached and a total of 59 content areas were identified. After grouping similar "ways" together and after conducting a consensus rating of importance, 19 unique and important "ways" remained. In some languages, formulating was challenging for three of the 19, resulting in changes to two English words and dropping two other words, yielding a final list of 17 "ways of being" with harmonized wording in 4 languages., Conclusion: This study underscores the significance of listening to older adults and highlights the importance of considering linguistic and cultural nuances in measure development., (© 2024. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Introduction: Through interviews with 148 older persons from four countries and in four languages, the content for a 17-item measure of active living was developed. The purpose of this paper is to present further evidence of the extent to which this new measure, Older Persons Active Living (OPAL), is "fit-for-purpose" for measuring the extent of active living at one point in time., Methods: A cross-sectional study was carried out on a population aged 65 + and living independently, drawn from a participant panel, HostedinCanada, sampling people from Canada, United States, United Kingdom, and Netherlands. The survey instrument comprised the OPAL questionnaire rated on importance and frequency, sociodemographics, and information on physical and mental function. The argument-based approach to validity framed the analyses. Logistic regression, structural equation modeling, ordinary least-squares regression, and correlation were used to generate estimates for parameters underpinning validity evidence., Results: A total of 1612 people completed the survey, 100 to 400 people across the 6 country-language strata. The proportion of people rating the items as extremely or quite important ranged from 60 to 90%, with no important differences between men and women and few differences between strata. A single-factor structure was supported. The ordinality of the response options justified an additive total score yielding a near normal distribution (mean: 33.1; SD: 11.5; range 0-51). Correlations with other measures of converging constructs were of moderate strength (~ 0.50), and differences across groups known to affect functioning and health were observed, suggesting a Miminal Important Difference (MID) of 6 out of 51., Conclusion: The results of this study provide evidence that the 17-item OPAL measure is fit for the purpose of estimating the extent to which older persons are living actively at one point in time., (© 2024. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

In breast cancer research, utility assumptions are outdated and inconsistent which may affect the results of quality adjusted life year (QALY) calculations and thereby cost-effectiveness analyses (CEAs). Four hundred sixty four female patients with breast cancer treated at Erasmus MC, the Netherlands, completed EQ-5D-5L questionnaires from diagnosis throughout their treatment. Average utilities were calculated stratified by age and treatment. These utilities were applied in CEAs analysing 920 breast cancer screening policies differing in eligible ages and screening interval simulated by the MISCAN-Breast microsimulation model, using a willingness-to-pay threshold of €20,000. The CEAs included varying sets on normative, breast cancer treatment and screening and follow-up utilities. Efficiency frontiers were compared to assess the impact of the utility sets. The calculated average patient utilities were reduced at breast cancer diagnosis and 6 months after surgery and increased toward normative utilities 12 months after surgery. When using normative utility values of 1 in CEAs, QALYs were overestimated compared to using average gender and age-specific values. Only small differences in QALYs gained were seen when varying treatment utilities in CEAs. The CEAs varying screening and follow-up utilities showed only small changes in QALYs gained and the efficiency frontier. Throughout all variations in utility sets, the optimal strategy remained robust; biennial for ages 40-76 years and occasionally biennial 40-74 years. In sum, we recommend to use gender and age stratified normative utilities in CEAs, and patient-based breast cancer utilities stratified by age and treatment or disease stage. Furthermore, despite varying utilities, the optimal screening scenario seems very robust., (© 2024 The Authors. International Journal of Cancer published by John Wiley & Sons Ltd on behalf of UICC.)

The Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct ACP, for example, to continue or initiate conversations after hospitalization. However, research shows that ACP conversations are often ad hoc and in frail patients, ACP is often only initiated when admitted to a nursing home by elderly care physicians who are on the staff. Tools that raise awareness of triggers to initiate ACP, screening tools, information brochures, checklists and training have been developed and implemented with funding by national programs which currently focus on implementation projects rather than or in addition to, research. The programs commonly require educational deliverables, patient and public involvement and addressing diversity in patient groups. A major challenge is how to implement ACP systematically and continuously across sectors and disciplines in a way that supports a proactive yet person-centered approach rather than an approach with an exclusive focus on medical procedures. Digital solutions can support continuity of care and communication about care plans. Solutions should fit a culture that prefers trust-based, informal deliberative approaches. This may be supported by involving disciplines other than medicine, such as nursing and spiritual caregiving, and public health approaches., (Copyright © 2023. Published by Elsevier GmbH.)

Background: The COVID-19 pandemic affects care practices for critically ill patients, with or without a COVID-19 infection, and may have affected the experience of dying for patients and their relatives in the physical, psychological, social and spiritual domains., Aim: To give insight into aspects of end-of-life care practices that might have jeopardised or supported the dignity of the patients and their family members during the first wave of the COVID-19 pandemic in the Netherlands., Methodology: A qualitative study involving 25 in-depth interviews with purposively sampled bereaved relatives of patients who died during the COVID-19 pandemic between March and July 2020 in the Netherlands. We created a dignity-inspired framework for analysis, and used the models of Chochinov et al. and Van Gennip et al. as sensitising concepts. These focus on illness-related aspects and the individual, relational and societal/organisational level of dignity., Results: Four themes concerning aspects of end-of-life care practices were identified as possibly jeopardising the dignity of patients or relatives: 'Dealing with an unknown illness', 'Being isolated', 'Restricted farewells' and 'Lack of attentiveness and communication'. The analysis showed that 'Meaningful end-of-life moments' and 'Compassionate professional support' contributed to the dignity of patients and their relatives., Conclusion: This study illuminates possible aspects of end-of-life care practices that jeopardised or supported dignity. Experienced dignity of bereaved relatives was associated with the unfamiliarity of the virus and issues associated with preventive measures. However, most aspects that had an impact on the dignity experiences of relatives were based in human action and relationships. Relatives experienced that preventive measures could be mitigated by health care professionals to make them less devastating., (© 2021 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Background: During the COVID-19 outbreak restricting measures may have affected the provision of good end-of-life care for patients with and without COVID-19., Aim: To describe characteristics of patients who died and the care they received, and to examine how patient characteristics, setting and visiting restrictions are related to provided care and evaluation of the dying process., Design: An open observational online survey among healthcare professionals about their experience of end-of-life care that was provided to a patient with or without COVID-19 who died between March and July 2020., Setting/participants: Healthcare professionals (nurses, physicians and others) in the Netherlands from all settings: home ( n  = 163), hospital ( n  = 249), nursing home ( n  = 192), hospice ( n  = 89) or elsewhere ( n  = 68)., Results: Of patients reported on, 56% had COVID-19. Among these patients, 358 (84.4%) also had a serious chronic illness. Having COVID-19 was negatively, and having a serious chronic illness was positively associated with healthcare staff's favourable appreciation of end-of-life care. Often there had been visiting restrictions in the last 2 days of life (75.8%). This was negatively associated with appreciation of care at the end of life and the dying process. Finally, care at the end of life was less favourably appreciated in hospitals and especially nursing homes, and more favourably in home settings and especially hospices., Conclusions: Our study suggests that end-of-life care during the COVID-19 pandemic may be further optimised, especially in nursing homes and hospitals. Allowing at least some level of visits of relatives seems a key component.

Background: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce., Methods and Findings: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals., Conclusions: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed., Trial Registration: ISRCTN registry ISRCTN63110516., Competing Interests: I have read the journal’s policy and the authors of this manuscript have the following competing interests: BH and LB are developers of Respecting Choices and report personal fees from Gundersen Health, outside the submitted work.

Purpose: Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations., Methods: A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention., Results: In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that 'maintaining normal life' and 'experiencing meaningful relationships' were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred 'home' as final place of care., Conclusions: My Preferences forms provide some insights into patients' perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients.

Having good health-related quality of life (HRQoL) is essential, particularly for women after childbirth. However, little is known about its determinants. We aimed to identify the determinants of HRQoL after childbirth in a large community sample in the Netherlands. We have included 4312 women in the present study. HRQOL was assessed by a 12-Item Short Form Survey (SF-12) at around two months after childbirth; Physical and Mental Component Summary scores were calculated. Information on 27 potential determinants of HRQoL was collected through questionnaires and medical records. Multivariate linear regression models were applied to assess significant determinants of physical and mental HRQoL. Our study showed that older maternal age, shorter time since childbirth, elective/emergency cesarean delivery, loss of energy, maternal psychopathology, and the hospital admission of the infant were significantly associated with worse physical HRQoL ( p < 0.05); older maternal age, non-western background, low household income, loss of energy, and maternal psychopathology were significantly associated with worse mental HRQoL ( p < 0.05). We identified multiple determinants of suboptimal physical and mental HRQoL after childbirth. In particular, maternal psychopathology after childbirth was profoundly associated with mental HRQoL. These women may need support. We therefore call for awareness among health care professionals.

Objective: We aimed to assess to what extent men make informed choices in the context of prostate cancer screening and how written material contributes to that process., Methods: We developed a leaflet describing prostate cancer screening, and a questionnaire consisting of knowledge, attitude, and intended screening uptake components to assess informed decision-making. The leaflet and questionnaire were pilot-tested among men of the target population, adapted accordingly, and sent to 761 members of an online research panel. We operationalized whether the leaflet was read as spending one minute on the leaflet page and by a self-reported answer of respondents., Results: The response rate was 66% (501/761). The group who read the leaflet (n = 342) correctly answered a knowledge item significantly more often (10.9 versus 8.8; p < 0.001) than those who did not read the leaflet (n = 159), and made more informed choices (73% versus 56%; p = 0.001). There were no significant differences in attitude and intended screening uptake between both groups., Conclusion: Having read the leaflet could be one of the factors associated with increased levels of knowledge and informed decision-making., Practical Implications: The results of this study showed that increasing knowledge and supporting informed decision-making with written material are feasible in prostate cancer screening., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Objectives: To determine the effectiveness of advance care planning (ACP) in frail older adults., Design: Cluster randomized controlled trial., Setting: Residential care homes in the Netherlands (N=16)., Participants: Care home residents and community-dwelling adults receiving home care (N=201; n=101 intervention; n=100 control). Participants were 75 years and older, frail, and capable of consenting to participation., Intervention: Adjusted Respecting Choices ACP program., Measurements: The primary outcome was change in patient activation (Patient Activation Measure, PAM-13) between baseline and 12-month follow-up. Secondary outcomes included change in quality of life (SF-12), advance directive (AD) completion, and surrogate decision-maker appointment. Use of medical care in the 12 months after inclusion was also assessed. Multilevel analyses were performed, controlling for clustering effects and differences in demographics., Results: Seventy-seven intervention participants and 83 controls completed the follow-up assessment. There were no statistically significant differences between the intervention (-0.26±11.2) and control group (-1.43±10.6) in change scores of the PAM (p=.43) or the SF-12. Of intervention group participants, 93% completed an AD, and 94% appointed a decision-maker. Of control participants, 34% completed an AD, and 67% appointed a decision-maker (p<.001). No differences in the use of medical care were found., Conclusions: ACP did not increase levels of patient activation or quality of life but did increase completion of ADs and appointment of surrogate decision-makers. It did not affect use of medical care., (© 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society.)

Aims: The SF-Qualiveen is a short questionnaire that measures the impact of urinary symptoms on the quality of life of patients with urological dysfunction due to neurological disorders. The aim of this study is to translate, culturally adapt and validate a Dutch version of the SF-Qualiveen for use in Multiple Sclerosis (MS) patients., Methods: Cross-cultural adaptation of the original English SF-Qualiveen into Dutch was performed according to standardized guidelines. Adult MS patients with symptomatic urinary disorders who visited the Urology or Rehabilitation outpatient clinic of the Erasmus Medical Center completed the SF-Qualiveen and the Urinary Distress Inventory-6 (UDI-6), that evaluates bother caused by lower urinary tract symptoms and was used as a gold standard, at baseline and 1-2 weeks later. A control group recruited from the Otolaryngology outpatient clinic completed the questionnaires once. Reliability and validity were determined., Results: Fifty MS patients and 50 controls were included. SF-Qualiveen scores in patients were higher than in controls (on a scale of 0-4: 1.73 vs. 0.34; P < 0.001). Internal consistency (Cronbach's alpha >0.8) and reproducibility (Intraclass correlation coefficients >0.8) were good for the total SF-Qualiveen. Content validity was adequate and a significant relationship between SF-Qualiveen and UDI-6 (r = 0.510-0.479, P < 0.001) confirmed good criterion validity., Conclusions: The Dutch SF-Qualiveen showed good measurement properties. We recommend its use to measure urinary-specific quality of life in MS patients in research and clinical practice in the Netherlands., (© 2016 Wiley Periodicals, Inc.)

Purpose: We sought to establish the reliability and validity of the Dutch version of the Vancouver Symptom Score for Dysfunctional Elimination Syndrome for children with dysfunctional voiding and their parents., Materials and Methods: For this cross-sectional multicenter study the Vancouver Symptom Score for Dysfunctional Elimination Syndrome was translated and cross-culturally adapted to Dutch following a standardized process. Patients 16 years or younger with dysfunctional voiding and their parents were recruited at pediatric, pediatric urology and pelvic floor physical therapy outpatient clinics. The reference group consisted of children 6 to 16 years old without dysfunctional voiding and their parents. All groups completed questionnaires. The evaluated measurement properties included discriminative ability, internal consistency, test-retest reliability, interrater agreement, criterion validity using the Pediatric Incontinence Questionnaire and construct validity. A cutoff value for diagnosis of dysfunctional voiding was determined., Results: A total of 50 patients and 60 references and their parents were included in the study. The Vancouver Symptom Score for Dysfunctional Elimination Syndrome showed good discriminative ability. A moderate internal consistency was found (Cronbach alpha 0.37-0.55). Test-retest reliability was moderate to good, and interrater agreement demonstrated good correlation between children and parents (ICC 0.85, 95% CI 0.79-0.89). A weak correlation with the Pediatric Incontinence Questionnaire was found in patients and construct validity was confirmed. Cutoff scores for dysfunctional voiding were 11 and 9 for patients and parents, respectively., Conclusions: The Dutch Vancouver Symptom Score for Dysfunctional Elimination Syndrome displayed moderate to good reliability and validity properties for the patient and parent versions. Use of this instrument in clinical practice will support the assessment of dysfunctional voiding and facilitate international reporting of research results., (Copyright © 2016 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.)

Background: Understanding public opinion and attitudes regarding vaccination is crucial for successful outbreak management and effective communication at the European level., Methods: We explored national differences by conducting focus group discussions in The Netherlands, Poland and Sweden. Discussions were structured using concepts from behavioural models., Results: Thematic analysis revealed that participants would base their vaccination decision on trade-offs between perceived benefits and barriers of the vaccine also taking into account the seriousness of the new outbreak. Except for those having chronic diseases, participants expected a low infection risk, resulting in a low willingness to get vaccinated. Information about the health status of cases was considered important since this might change perceived susceptibility. Participants displayed concerns about vaccine safety due to the limited available time to produce and test vaccines in the acute situation of a new pandemic. Swedish participants mentioned their tendency of doing the right thing and following the rules, as well as to get vaccinated because of solidarity with other citizens and social influences. This appeared much less prominent for the Dutch and Polish participants. However, Swedish participants indicated that their negative experiences during the Influenza A/H1N1 2009 pandemic decreases their acceptance of future vaccinations. Polish participants lacked trust in their national (public) health system and government, and were therefore sceptical about the availability and quality of vaccines in Poland., Conclusions: Although participants overall expressed similar considerations, important differences between countries stand out, such as previous vaccination experiences, the degree of adherence to social norms, and the degree of trust in health authorities., (Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Erectile dysfunction (ED), affecting men worldwide, is associated with worse mental health. The severity of ED as well as the effect of its treatment can be assessed using valid self-reported outcome measures. A widely used measure is the International Index of Erectile Function short form (IIEF-5) which is not yet validated in Dutch. The objective of this study was to translate the IIEF-5 into Dutch and to investigate its reliability and validity to provide a useful evaluation tool. The IIEF-5 was translated into Dutch following standardized forward-backward procedures. To conduct this observational study, men with symptoms of ED completed the Dutch IIEF-5 at inclusion, 1 week later, and 6 months after inclusion. A population-based sample (reference group) completed the IIEF-5 once. The quality domains reliability and validity were addressed by testing the measurement properties internal consistency, reliability, measurement error, and content validity. Data of 82 patients and 253 reference group participants were analyzed. Internal consistency was adequate with Cronbach's alpha of 0.94 in both patient and reference group. In patients, the test-retest reliability was adequate with an intra-class correlation coefficient for agreement of 0.88. A floor effect was present in the patient group (42%), though not in the reference group (3%). There was no ceiling effect in patients (0%), while this was present in the reference group (17%). Analysis of responsiveness was not possible due to the limited number of patients receiving treatment. The Dutch IIEF-5 is a reliable and valid measure to determine severity of symptoms of ED. This evaluation tool is valuable for clinical use and interpreting results across international clinical studies. The context of a patient's sexual life is, however, indispensable and should be taken into account., (© 2015 American Society of Andrology and European Academy of Andrology.)

Objectives and Hypothesis: To establish the reliability and validity of the Dutch version of the Pelvic Organ Prolapse/Urinary Incontinence Sexual Questionnaire (PISQ-12) in women with pelvic floor dysfunction., Methods: The PISQ-12 was translated into Dutch following a standardized translation process. A group of 124 women involved in a heterosexual relationship who had had symptoms of urinary incontinence, fecal incontinence and/or pelvic organ prolapse for at least 3 months were eligible for inclusion. A reference group was used for assessment of discriminative ability. Data were analyzed for internal consistency, reproducibility, construct validity, responsiveness, and interpretability. An alteration was made to item 12 and was corrected for during the analysis., Results: The patient group comprised 70 of the 124 eligible women, and the reference group comprised 208 women from a panel representative of the Dutch female population. The Dutch PISQ-12 showed an adequate internal consistency with a Cronbach's alpha of 0.57 - 0.69, increasing with correction for item 12 to 0.69 - 0.75, for the reference and patient group, respectively. Scores in the patient group were lower (32.6 ± 6.9) than in the reference group (36.3 ± 4.8; p = 0.0001), indicating a lower sexual function in the patient group and good discriminative ability. Reproducibility was excellent with an intraclass correlation coefficient for agreement of 0.93 (0.88 - 0.96). A positive correlation was found with the Short Form-12 Health Survey (SF-12) measure representing good criterion validity. Due to the small number of patients who had received treatment at the 6-month follow-up, no significant responsiveness could be established., Conclusions: This study showed that the Dutch version of the PISQ-12 has good validity and reliability. The PISQ-12 will enable Dutch physicians to evaluate sexual dysfunction in women with pelvic floor disorders.

Objective: Patients with potentially indolent prostate cancer (PC) can be managed with active surveillance (AS). Our objective was to analyse how anxiety and distress develop in men with untreated PC and whether highly anxious men quit AS., Methods: One hundred and fifty Dutch patients who opted for AS in the Prostate cancer Research International: Active Surveillance Study were invited to participate in an additional prospective, longitudinal quality of life (QoL) study within 6 months after diagnosis. Participants completed questionnaires with validated measures on anxiety and distress at inclusion (t = 0), 9 (t = 9) and 18 (t = 18) months after diagnosis. We assessed changes in scores on depression (Center for Epidemiologic Studies Depression (CES-D) scale), generic anxiety (State-Trait Anxiety Inventory (STAI-6)), PC-specific anxiety (Memorial Anxiety Scale for Prostate Cancer (MAX-PC)) and decisional conflict (Decisional Conflict Scale (DCS)) about patients' treatment choice between t = 0, t = 9 and t = 18 using repeated measures analysis., Results: Response rates for patients still on AS at t = 0, t = 9 and t = 18 assessments were 86%, 90% and 96%, respectively. Nine patients (7%, 9/129) between t = 0 and t = 9 and 33 of 108 patients (31%) between t = 9 and t = 18 stopped AS, mostly (86%) because of protocol-based reasons. CES-D, total MAX-PC and DCS scores did not change significantly (p > 0.05) when comparing t = 18 with t = 9 and t = 0 scores, but generic anxiety (STAI-6; p = 0.033) and fear of disease progression (sub-score of the MAX-PC; p = 0.007) decreased significantly. These differences, however, were clinically modest (0.089 SD and 0.281 SD). Overall, six of 129 men (5%) discontinued AS because of anxiety and distress., Conclusions: When men with low-risk PC are managed with AS, fear of disease progression and general anxiety decreased, and only few may discontinue AS because of anxiety and distress. This suggests that negative QoL effects are limited in men with favourable clinical characteristics who opted for AS. (Registered trial number, NTR1718) ., (Copyright © 2014 John Wiley & Sons, Ltd.)

Objectives: To assess how girls' preferences have changed almost 3 years after the much debated start of the human papillomavirus (HPV) vaccination program., Methods: A discrete choice experiment (DCE) was conducted among girls aged 11-15 years who were invited, or were not yet invited, to get vaccinated. A panel latent class model was used to determine girls' preferences for vaccination based on five characteristics: degree of protection against cervical cancer; duration of protection; risk of mild side-effects; age of vaccination; and the number of required doses of the vaccine., Results: The response rate was 85% (500/592). Most girls preferred vaccination at age 14 years (instead of at age 9 years) and a 2-dose scheme (instead of the current 3-dose scheme). Girls were willing to trade-off 7% (CI: 3.2% to 10.8%) of the degree of protection to have 10% less risk of mild side-effects, and 4% (CI: 1.2% to 5.9%) to receive 2 doses instead of 3 doses. Latent class analyses showed that there was preference heterogeneity among girls, i.e., higher educated girls and HPV vaccinated girls had a higher probability to opt for HPV vaccination at a higher age than lower educated girls or non-vaccinated girls., Conclusions: Three years after the start of HPV vaccination program the risk of mild side-effects and age at vaccination seem to have become less important. For the Dutch national immunization program, we recommend not to lower the current target age of 12 years. A 2-dose scheme may result in a higher uptake and we recommend that if this scheme is introduced, it needs to receive adequate publicity.

Although screening for child abuse at emergency departments (EDs) increases the detection rate of potential child abuse, an accurate instrument is lacking. This study was designed to measure the accuracy of a screening instrument for detection of potential child abuse used in EDs. In a prospective cohort study at three Dutch EDs, a 6-item screening instrument for child abuse, Escape, was completed for each child visiting the ED. The data from the completed Escape instrument was used to calculate sensitivity, specificity, and the positive/negative predictive value per item. The clinical notes and conclusions of the screen instruments of all potentially abused children reported to the hospitals' Child Abuse Teams were collected and reviewed by an expert panel. A logistic regression model was used to evaluate the predictors of potential abuse. Completed Escape instruments were available for 18,275 ED visits. Forty-four of the 420 children with a positive screening result, and 11 of the 17,855 children with a negative result were identified as potentially abused. Sensitivity of the Escape instrument was 0.80 and specificity was 0.98. Univariate logistic regression showed that potentially abused children were significantly more likely to have had an aberrant answer to at least one of the items, OR=189.8, 95% CI [97.3, 370.4]. Most of the children at high risk for child abuse were detected through screening. The Escape instrument is a useful tool for ED staff to support the identification of those at high risk for child abuse., (Copyright © 2013 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Introduction and Hypothesis: The objective of this study was to validate the Pelvic Floor Distress Inventory (PFDI-20) and Pelvic Floor Impact Questionnaire (PFIQ-7) in Dutch women., Methods: Patients with pelvic floor dysfunction completed the Dutch questionnaires at (1) inclusion to evaluate internal consistency, (2) 1 week later to assess test-retest reliability, and (3) 6 months later to assess responsiveness and interpretability of change. To assess validity, floor and ceiling effects and construct validity were tested. A population-based sample (reference group) completed the questionnaires once., Results: Data of 111 patients and 283 reference group participants were analyzed. Internal consistency of baseline scores in patient and reference groups was moderate (Cronbach's alpha 0.52-0.60) to adequate in the PFDI-20 (Cronbach's alpha 0.71-0.84) and adequate in the PFIQ-7 (Cronbach's alpha 0.88-0.94). Both measures presented adequate test-retest reliability (intraclass correlation coefficient 0.79-0.91) and adequate responsiveness (area under the receiver-operating characteristic curve both 0.77). Interpretability was adequate for PFDI-20 and acceptable for PFIQ-7 with a clinically relevant minimally important change of -23 and -29 points, respectively. At baseline, the scales of the PFIQ-7 showed floor effects (44-55 %) in patients, though the PFIQ-7 summary score did not. No ceiling effects were observed. Construct validity was adequate with all predefined hypotheses confirmed regarding subgroup discrimination using pooled patient and reference group baseline data., Conclusions: For assessing distress and health-related quality of life of pelvic floor dysfunction, the Dutch PFDI-20 and PFIQ-7 are reliable and valid in the general Dutch population, and also responsive and interpretable among tertiary care-seeking women.

Background: Lichen sclerosus (LS) is a chronic inflammatory skin disease. Earlier studies have shown an impaired health-related quality of life (HRQoL), but more extensive research including generic questionnaires has not been reported., Objectives: To investigate, in a cross-sectional study, the HRQoL of a sample of Dutch women with LS; to compare the resulting HRQoL data with that available from other skin diseases and the general Dutch population; to explore factors that may influence the HRQoL., Methods: Female members of the Dutch LS Foundation and Support Group filled out three questionnaires electronically: the Skindex-29, the SF-12 and the EQ-5D visual analogue scale (VAS). We distinguished Skindex-29 scores into groups with 'little' (score 0-24), 'mild' (25-31), 'moderate' (32-43) and 'severe' (44-100) impact on HRQoL. We compared differences using the Mann-Whitney U-test and the Kruskal-Wallis test, and correlations using Spearman's rank correlation coefficient., Results: A total of 262 women with LS were included. The average diagnostic delay was 4·9 (SD 7·1) years. Patients had a mean total Skindex-29 score of 38·4 (0-100, SD 17·2). Domain scores for symptoms, emotions and functioning were 46·8 (SD 19·0), 38·2 (SD 20·2) and 33·6 (SD 19·3), respectively. The SF-12 showed average PCS-12 (physical component) and MCS-12 (mental component) scores of 47·7 and 48·5, respectively. For the Dutch population these scores were 49·3 and 52·3. The mean EQ-5D VAS score was 74·1 (SD 15·4)., Conclusions: There is a considerable delay in diagnosis for female Dutch patients with LS. The Skindex-29 domain scores showed a moderately impaired HRQoL. Women with LS reported a lower generic HRQoL than the average female Dutch population., (© 2012 The Authors. BJD © 2012 British Association of Dermatologists.)

Objective: Although systematic screening for child abuse of children presenting at emergency departments might increase the detection rate, studies to support this are scarce. This study investigates whether introducing screening, and training of emergency department nurses, increases the detection rate of child abuse., Methods: In an intervention cohort study, children aged 0 to 18 years visiting the emergency departments of 7 hospitals between February 2008 and December 2009 were enrolled. We developed a screening checklist for child abuse (the "Escape Form") and training sessions for nurses; these were implemented by using an interrupted time-series design. Cases of suspected child abuse were determined by an expert panel using predefined criteria. The effect of the interventions on the screening rate for child abuse was calculated by interrupted time-series analyses and by the odds ratios for detection of child abuse in screened children., Results: A total of 104028 children aged 18 years or younger were included. The screening rate increased from 20% in February 2008 to 67% in December 2009. Significant trend changes were observed after training the nurses and after the legal requirement of screening by the Dutch Health Care Inspectorate in 2009. The detection rate in children screened for child abuse was 5 times higher than that in children not screened (0.5% vs 0.1%, P < .001)., Conclusions: These results indicate that systematic screening for child abuse in emergency departments is effective in increasing the detection of suspected child abuse. Both a legal requirement and staff training are recommended to significantly increase the extent of screening.

Introduction: The Global Rating Scale (GRS) is a quality assurance program that was developed in England to assess patient-centered care in endoscopy. The aim of the current study was to evaluate patient experiences of colonoscopy using the GRS in order to compare different departments and to provide benchmarks. The study also evaluated factors associated with patient satisfaction., Methods: A GRS questionnaire was used both before and after the procedure in outpatients undergoing colonoscopy. The questionnaire assessed the processes associated with the colonoscopy, from making the appointment up until discharge. Mean values and ranges of 12 endoscopy departments were calculated together with P values in order to assess heterogeneity., Results: In total, 1904 pre-procedure and 1532 (80 %) post-procedure questionnaires were returned from 12 endoscopy departments. The mean time patients had to wait for their procedure was 4.3 weeks (range 3.1 - 5.8 weeks), and 54 % (range 35 - 64 %; P < 0.001) reported being given a choice of appointment dates/times. Discomfort during colonoscopy was reported by 20 % (range 8 - 40 %; P < 0.001). Recovery room privacy was satisfactory for 76 % of patients (range 66 - 90 %; P < 0.05). The majority of patients reported being sufficiently informed about what to do in case of problems after discharge (79 %, range 43 - 98 %; P < 0.001), and 85 % of individuals stated that they would be willing to repeat the colonoscopy procedure (range 72 - 92 %; P < 0.001). Factors associated with a decreased willingness to return were the burdensome bowel preparation (odds ratio [OR] = 0.25; P < 0.001), "rushing staff" attitude (OR = 0.57; P < 0.05), low acceptance of the procedure (OR = 0.42; P < 0.01), and more discomfort than expected (OR = 0.54; P < 0.05)., Conclusion: Overall patient experiences with colonoscopy were satisfactory, but they also showed considerable variation. This study shows that use of a GRS patient questionnaire is feasible in the Dutch endoscopy setting for the assessment of patient experience. The significant variability between endoscopy units can be used to benchmark services and enable shortcomings to be identified., (© Georg Thieme Verlag KG Stuttgart · New York.)

Objective: Screening for cervical cancer may have favourable or unfavourable effects at the individual level. This study assesses whether invitees in The Netherlands made an informed choice about screen uptake., Methods: Attached to the invitation letter and the information leaflet, screen invitees were sent a questionnaire. An informed decision was defined as based on decision-relevant knowledge, while the woman's attitude was consistent with her actual screening behaviour., Results: Of all cervical screen participants, 60% (924/1551) responded to the questionnaire. Decision-relevant knowledge was sufficient in 595 women. Especially knowledge about false-positive and false-negative test results was limited. The attitude towards cervical screening was mainly positive (99%). Requirements for informed decision making were met in 571 (68%) women and in 91% when an alternative cut-off point of sufficient decision-relevant knowledge was applied. Most frequently reported main reasons to attend were early detection of abnormalities (67%) and reassurance in case of a normal smear (22%)., Conclusion: Insufficient decision-relevant knowledge was the main cause of uninformed attendance., Practice Implication: Adequate strategies to provide invitees with sufficient decision-relevant information are still needed, especially regarding false-positive and false-negative test results., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Objective: This study examines the detection rates of suspected child abuse in the emergency departments of seven Dutch hospitals complying and not complying with screening guidelines for child abuse., Design: Data on demographics, diagnosis and suspected child abuse were collected for all children aged ≤18 years who visited the emergency departments over a 6-month period. The completion of a checklist of warning signs of child abuse in at least 10% of the emergency department visits was considered to be compliance with screening guidelines., Results: A total of 24 472 visits were analysed, 54% of which took place in an emergency department complying with screening guidelines. Child abuse was suspected in 52 children (0.2%). In 40 (77%) of these 52 cases, a checklist of warning signs had been completed compared with a completion rate of 19% in the total sample. In hospitals complying with screening guidelines for child abuse, the detection rate was higher (0.3%) than in those not complying (0.1%, p<0.001)., Conclusion: During a 6-month period, emergency department staff suspected child abuse in 0.2% of all children visiting the emergency department of seven Dutch hospitals. The numbers of suspected abuse cases detected were low, but an increase is likely if uniform screening guidelines are widely implemented.

A discrete choice experiment was developed to investigate if girls aged 12-16 years make trade-offs between various aspects of human papillomavirus (HPV) vaccination, and to elicit the relative weight that girls' place on these characteristics. Degree of protection against cervical cancer, protection duration, risk of side-effects, and age of vaccination, all proved to influence girls' preferences for HPV vaccination. We found that girls were willing to trade-off 38% protection against cervical cancer to obtain a lifetime protection instead of a protection duration of 6 years, or 17% to obtain an HPV vaccination with a 1 per 750,000 instead of 1 per 150,000 risk of serious side-effects. We conclude that girls indeed made a trade-off between degree of protection and other vaccine characteristics, and that uptake of HPV vaccination may change considerably if girls are supplied with new evidence-based information about the degree of protection against cervical cancer, the protection duration, and the risk of serious side-effects., (Copyright © 2010 Elsevier Ltd. All rights reserved.)

Background: Population-based screening for prostate cancer (PCa) remains controversial. To help men making informed decisions about prostate specific antigen (PSA) screening a risk indicator (www.uroweb.org) was developed. This risk indicator is embedded in a leaflet that informs men about the pros and cons of PCa screening and enables calculation of the individual risk of having a biopsy detectable PCa., Aim: To assess the effect of providing a leaflet including individualized risk estimation on informed decision making of men, i.e. knowledge about PCa and PSA screening, attitude towards undergoing a PSA test and intention to have a PSA test., Methods: An intervention study among 2000 men, aged 55-65 years, randomly selected from the population registry of the city of Dordrecht, the Netherlands, in 2008. Men were sent a questionnaire on knowledge of PCa, attitude and intention to have a PSA test. Men without a history of (screening for) PCa were sent the leaflet and Questionnaire 2 within 2 weeks after returning Questionnaire 1. Validated health and anxiety measures were used., Results: One thousand and twenty seven of 2000 men completed Questionnaire 1 (51%), of whom 298 were excluded due to a history of (screening for) PCa. Of the 729 remaining men, 601 completed Questionnaire 2 as well. At the second assessment significantly more men met the requirements of informed decision making (15% versus 33%, p<0.001), more men had relevant knowledge (284/601, 50% versus 420/601, 77%, p<0.001) and the intention to have a PSA test had increased (p<0.001)., Conclusions: Providing information on PCa screening combined with individualized risk estimation enhanced informed decision making and may be used for shared decision making on PSA screening of physicians and patients., (Copyright (c) 2009 Elsevier Ltd. All rights reserved.)

Purpose: Low-grade abnormalities after cervical cancer screening, i.e. borderline (Pap 2) or mildly (Pap 3a1) dyskaryotic (BMD) smear results, are found in considerable numbers of women annually. We compared quality of life and anxiety in women with BMD and a reference group of screening participants who were awaiting smear taking., Methods: Five hundred and fifty women with BMD in the preceding 6-24 months, identified through a regional screening organisation, were sent a questionnaire addressing generic quality of life (12-item Short-Form Health Survey [SF-12], EuroQol classification [EQ-5D]), generic anxiety (STAI-6) and screen-specific anxiety (Psychological Consequences Questionnaire [PCQ])., Results: After adjustment for differences in background characteristics, women with BMD (n=270) reported more generic anxiety (44.4 versus 32.6) and screen-specific anxiety (5.0 versus 1.4) than the reference group (n=352). The differences indicated statistical (p<0.001) and clinical significance. High anxiety (STAI-6>44) was reported by 49% of the BMD group. Mental quality of life was worse in the BMD than in the reference group (44.2 versus 52.0, p<0.001). The BMD group considered screening more often frightening (27% versus 10%) and reported 'fear for cervical cancer' more frequently as their reason for having a (repeat) smear taken (62/270, 23% versus 12/346, 4%)., Conclusion/discussion: BMD smears were consistently associated with considerable excess anxiety in the period of 6-24 months after the original BMD Pap smears had been taken.

Purpose: Men with prostate cancer (PC) may show specific disease-related anxiety. We evaluated the psychometric properties of the Dutch adaptation of the Memorial Anxiety Scale for Prostate Cancer (MAX-PC)., Methods: The MAX-PC was translated using standardized forward-backward procedures. Patients (N = 150) on active surveillance, a strategy of initially withholding active therapy, for recently diagnosed early PC were mailed a questionnaire. Internal consistency was estimated using Cronbach's alpha. The scale structure was analyzed using confirmatory factor analysis (CFA). Construct validity was evaluated by Pearson's correlations between MAX-PC scores and scores on decisional conflict (DCS), generic anxiety (STAI), depression (CES-D), and general mental health (SF-12 MCS)., Results: Data from 129 respondents were used (response rate 86%). Cronbach's alpha for the total score and the three subscales were 0.77, 0.91, 0.64, and 0.85, respectively. CFA largely confirmed the three-factor structure as used in the original publication (model fit: chi(2) 149, P = 0.051). The patterns of directions and sizes of the correlations (r = 0.36-0.66) between MAX-PC scale scores and the other variables were in accordance with a priori hypotheses, except for the prostate-specific antigen anxiety subscale. The relatively poor performance of this scale in the original version was replicated., Conclusions: The structure and validity of the MAX-PC to quantify PC-specific anxiety were largely confirmed in Dutch patients.

Purpose: In a population-based sample of cervical cancer survivors, health-related quality of life (HRQoL) was assessed 2-10 years postdiagnosis., Methods and Materials: All patients given a diagnosis of cervical cancer in 1995-2003 in the Eindhoven region, The Netherlands, and alive after Jan 2006 were identified through the cancer registry. Generic HRQoL (36-Item Short-Form Health Survey, EQ-5D), cervical cancer-specific HRQoL (European Organization for Research and Treatment of Cancer Quality-of-Life questionnaire cervical cancer module), and anxiety (6-item State Trait Anxiety Inventory) were assessed and compared with a reference population (n = 349). Data for tumor characteristics at diagnosis and disease progression were available., Results: A total of 291 women responded (69%), with a mean age of 53 +/- 13 (SD) years (range, 31-88 years). Treatment had consisted of surgery (n = 195) or a combination of therapies (n = 75); one woman had not been treated. Of all women, 85% were clinically disease free, 2% had a recurrence/metastasis, and in 13%, this was unknown. After controlling for background characteristics (age, education, job and marital status, having children, and country of birth), generic HRQoL scale scores were similar to the reference population, except for worse mental health in survivors. The most frequent symptoms were crampy pain in the abdomen or belly (17%), urinary leakage (15%), menopausal symptoms (18%), and problems with sexual activity. Compared with the 6-10-year survivors, more sexual worry and worse body image were reported by the 2-5-year survivors. Compared with surgery only, especially primary radiotherapy was associated with an increased frequency of treatment-related side effects, also after controlling for age and disease stage at diagnosis and follow-up., Conclusions: Most cervical cancer survivors were coping well, although their mental health was worse than in the reference population. Even after 2-10 years, radiotherapy was associated with an increased frequency of treatment-related side effects.

Purpose: To obtain insight into the long-term (5- to 10-year) effects of prostate cancer and treatment on bowel, urinary, and sexual function, we performed a population-based study. Prostate-specific function was compared with an age-matched normative population without prostate cancer., Methods and Materials: Through the population-based Eindhoven Cancer Registry, we selected all men diagnosed with prostate cancer between 1994 and 1998 in the southern Netherlands. In total, 964 patients, alive in November 2004, received questionnaire; 780 (81%) responded., Results: Urinary problems were most common after a prostatectomy; bowel problems were most common after radiotherapy. Compared with an age-matched normative population both urinary and bowel functioning and bother were significantly worse among survivors. Urinary incontinence was reported by 23-48% of survivors compared with 4% of the normative population. Bowel leakage occurred in 5-14% of patients compared with 2% of norms. Erection problems occurred in 40-74% of patients compared with 18% of norms., Conclusions: These results form an important contribution to the limited information available on prostate-specific problems in the growing group of long-term prostate cancer survivors. Bowel, urinary, and sexual problems occur more often among long-term survivors compared with a reference group and cannot be explained merely by age. Because these problems persist for many years, urologists should provide patients with adequate information before treatment. After treatment, there should be an appropriate focus on these problems.

Aim: Whether a prostate cancer diagnosis induces response shift has not been established so far. Therefore, we assessed response shift in men who were diagnosed with localized prostate cancer., Patients and Methods: Out of 3,892 men who completed a questionnaire before screening, 82 were subsequently diagnosed with prostate cancer. Response shift was assessed in 52 (response 63%) by the then-test (EuroQol self-rating of health, Short-Form 36 mental health and vitality) and a novel method: rating of vignettes relating to side effects of prostate cancer treatment (urinary, bowel and erectile dysfunction). Three then-tests were conducted: two referencing pre-diagnosis (measured pre- and post-treatment), and one referencing pre-treatment (measured post-treatment)., Results: Then-test scores of pre-diagnosis health were significantly higher than original scores, indicating a more positive judgement in retrospect. Then-test scores of pre-treatment health were lower than original scores. Especially the vignette on erectile dysfunction was rated less bad after diagnosis versus before (P < 0.001, moderate effect size)., Conclusions: We found evidence for response shift in men who were diagnosed with prostate cancer. Men evaluated urinary, bowel, and erectile dysfunction as less bad after they had become patients who can expect to experience these side effects. The rating of vignettes is a promising additional technique to assess response shift.

Primary prostate cancer treatment often results in suboptimal urinary, bowel and/or sexual function. These effects are not inevitable. After treatment patients typically report high health related quality of life (QoL) scores. This discrepancy between disease-specific and generic results raises the question which meaning side effects actually have to patients. In a qualitative study we explored two mechanisms which could possibly explain the discrepancy: insensitivity of generic QoL measures to these specific symptoms and adaptation to changed health (response shift). In semi-structured interviews with 33 prostate cancer patients in the Netherlands we collected data on their opinions regarding health and QoL, we observed how respondents behaved when completing health status and QoL questionnaires, and solicited comments on a QoL questionnaire, its items, and its content validity. We observed that patients trivialized sexual (dys) function referring to old age. We found that while they might consider sexual, urinary, and bowel dysfunctions as problems, they did not take such dysfunctions into account when completing QoL measures because they did not view these dysfunctions as aspects of health. This finding reveals a so far unidentified cause of the insensitivity of generic measures of health status. Furthermore, response shift appeared to be present: many patients accepted the side effects as inevitable consequences of having been treated for prostate cancer, a condition they perceived as life threatening. We conclude that generic QoL measures cannot reveal the impact of sexual, urinary and bowel dysfunctions on patients because such dysfunctions are not perceived as health problems. By presenting these findings we want to draw attention to issues that complicate QoL assessments in general and in prostate cancer patients in particular.

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

The extent of effective prostate-specific antigen (PSA) contamination in the Rotterdam section of the ongoing European Randomized Study of Screening for Prostate Cancer (ERSPC) trial was evaluated and defined as when opportunistic PSA testing of >/= 3.0 ng/ml was followed by biopsy, similar to the regular procedure within the trial. Records of participants aged 55-74 years at entry were linked to the regional database of the general practitioner (GP) laboratory to obtain PSA tests requested by GPs in the period 1 July 1997 to 31 May 2000 (2.9 years), and to the national pathology database to quantify the number of biopsies. All men randomized were included, only those with prostate cancer screen-detected or clinically diagnosed before July 1997 were omitted from the analyses. 2,895 out of the 14,349 men (20.2%) in the control arm and 1,981 out of the 14,052 men (14.1%) in the screening arm were PSA-tested, at an average annual rate of 73 and 52 per 1,000 person-years, respectively. These rates were higher than those recorded at the national and regional levels, 33 and 38 per 1,000 person-years, respectively. Opportunistic PSA testing in the control arm reached a peak within the first months of randomization, after which it decreased to around 70 per 1,000 person-years. An opposite pattern was observed in the screening arm, where participants already had received the scheduled screening within the trial. The proportion of men in the control arm with PSA >/= 3.0 ng/ml followed by biopsy and prostate cancer was 7-8% and 3%, respectively (3% and 0.4-0.6% in the screening arm), over the whole study period. Over a 4-year rescreening interval, the average PSA and effective contamination amount were approximately 28% and 10%, respectively. PSA testing in the control arm in the Rotterdam ERSPC section is high, but was not followed by a substantial increase in prostate biopsies. Although the reasons for ordering PSA test or indicating biopsy are unknown, effective PSA contamination in the Rotterdam ERSPC section is low and not likely to jeopardize the power of the trial., (Copyright 2003 Wiley-Liss, Inc.)

Objective: We aimed at developing and testing a Dutch health-related quality of life measure for localized prostate cancer patients., Methods: Scales on urinary and bowel function and bother from the UCLA Prostate Cancer Index (PCI) underwent formal linguistic and cultural translation. PCI sexual scales were replaced by an existing Dutch sexual activities module (SAc). After qualitative pilot testing 389 patients with localized prostate cancer (mean age 67 +/- 7 years) completed the measure before and at 2 time points after primary treatment. Psychometric properties (feasibility, score distribution, reliability, construct validity and responsiveness to change) of the new instrument were analyzed., Results: Response rates ranged from 93% at baseline to 87% after treatment. Urinary and bowel function scales showed Cronbach's alphas >0.7. Urinary function and bother, and bowel function and bother were significantly correlated. Pre- vs. post-prostatectomy effect sizes were >0.9 only for urinary scales; while pre- vs. post-radiotherapy effect sizes were >0.75 only for bowel scales. Six months after baseline erectile dysfunction was reported by 64% of respondents, either as a problem in sexual activity or as a reason for not being sexually active., Conclusion: The Dutch PCI and SAc performed well in men treated for early stage prostate cancer.

Objective: To collect information for the purpose of establishing starting points and possibilities for a cost-effectiveness analysis of screening for adolescent idiopathic scoliosis (AIS)., Design: Interviews, literature review, questionnaires, an estimation of costs and discussions with experts and involved parties., Method: Following an initial interview with 16 orthopaedic surgeons and school doctors a literature study into the efficacy of treatment was carried out regarding the years 1989-1999. The variation in current practice was delineated by means of a questionnaire sent to all 51 municipal health services in the Netherlands. The costs of screening and treatment were estimated on the basis of health insurance premiums and a municipal health service cost model. All of the results were presented to five methodological experts and finally the study results and the recommendations of the five methodological experts were evaluated during a meeting of persons especially invited for this purpose., Results: Screening for AIS was established to realise early diagnosis and treatment with a brace, so as to reduce unsatisfactory cosmetic outcomes and the need for surgery. Screening was performed using the bending test and was performed in 40/48 (83%) of the participating municipal health services. The overall costs of screening and treatment amount to 6 million euros per year. There was no convincing evidence that the screening programme was sufficiently sensitive and bracing sufficiently effective. Neither was there proof of the opposite. The following was recommended: obtain reliable data by carrying out a randomised controlled trial on the effectiveness of treating AIS with bracing in an early stage; carry out a case-control study combined with a retrospective patient follow-up study to evaluate the current screening practice; draw up a national standard for the screening of postural disorders in youth healthcare to ensure effective practice.