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Quality‐adjusted life years are used in cost‐effectiveness analyses (CEAs). To calculate QALYs, a “utility” (0–1) is used for each health state induced or prevented by the intervention. We aimed to estimate the impact of quality of life (QoL) assumptions (utilities and durations of health states) on CEAs of cervical cancer screening. To do so, 12 alternative sets of utility assumptions were retrieved from published cervical cancer screening CEAs. Two additional sets were based on empirical QoL data that were integrally obtained through two different measures (SF‐6D and EQ‐5D) from eight groups of women (total n = 3,087), from invitation for screening to diagnosis with cervical cancer. Per utility set we calculated the number of quality‐adjusted days lost (QADL) for each relevant health state in cervical cancer screening, by multiplying the study‐specific assumed disutilities (i.e., 1‐utility) with study‐specific durations of the loss in QoL, resulting in 14 “QADL‐sets.” With microsimulation model MISCAN we calculated cost‐effectiveness of 342 alternative screening programs (varying in primary screening test [Human Papillomavirus (HPV) vs. cytology], starting ages, and screening interval) for each of the 14 QADL‐sets. Utilities used in CEAs appeared to differ largely. We found that ten QADL‐sets from the literature resulted in HPV and two in cytology as preferred primary test. The SF‐6D empirical QADL‐set resulted in cytology and the EQ‐5D one in HPV as preferred primary test. In conclusion, assumed utilities and health state durations determine cost‐effectiveness of cervical cancer screening. Also, the measure used to empirically assess utilities can be crucial for CEA conclusions. [ABSTRACT FROM AUTHOR]

Background: Research has shown that ethnic minority groups are less likely to participate in colorectal cancer (CRC) screening than the majority population and hence less likely to be diagnosed at an early stage when treatment is potentially more successful. Objective: To explore knowledge, attitudes and beliefs regarding CRC and CRC screening among ethnic minority groups in the Netherlands. Design: We conducted qualitative interviews with 30 first‐generation immigrants born in Turkey, Morocco and Surinam. We based the topic guide on the health belief model. Framework analysis was used to analyse our data. Results: Although knowledge of CRC and CRC screening was limited, all respondents felt susceptible to CRC. CRC screening was perceived to mainly benefit those individuals with poor health and symptoms. Although most respondents had a positive attitude towards CRC screening, knowledge about its potential harms was limited and self‐efficacy to participate was low. Adult children acted as important mediators in providing access to information. The language barrier and low literacy formed serious barriers to informed participation in CRC screening. Conclusion: To ensure that all eligible individuals, including ethnic minority groups, have equal opportunities to informed participation in screening, targeted communication strategies should be developed, such as oral and visual channels, and face‐to‐face communication in the mother tongue. This will help ethnic minority groups to make an informed decision about participation in CRC screening. [ABSTRACT FROM AUTHOR]

Objective: Self-reported data show differences in social outcomes (not being married/having a registered partnership; not living independently; using social benefits) for childhood cancer survivors compared with their peers. We aimed to determine differences in these social outcomes between survivors and the general population using national register data and explored associated risk factors.Methods: We performed medical record linkage between a single-centre cohort of 1768 ≥ 5-year survivors of childhood cancer (diagnosed 1966-2001) and two national registers (1999-2011) and obtained a random reference sample matched on gender and year of birth per survivor. We used multivariable logistic regression to calculate in adult survivors of childhood cancer (born before 1990) the odds of the specified social outcomes at the end of follow-up in both groups. Within the survivors, we analysed risk factors for the social outcomes.Results: We retrieved data from 1283 adult childhood cancer survivors and 25 082 reference persons. Survivors had higher odds (odds ratio; 95% confidence interval) of not being married (1.2; 1.07-1.42), not living independently (1.7; 1.41-2.00) and using social benefits (2.3; 1.98-2.69) compared with reference persons. Radiotherapy to head and/or neck, and an original central nervous system tumour diagnosis negatively influenced all social outcomes examined in childhood cancer survivors.Conclusions: National register data show differences between social outcomes in childhood cancer survivors and the general population, especially for survivors treated with radiotherapy to head and/or neck and those originally diagnosed with central nervous system tumours. Development and implementation of effective targeted support strategies to improve social outcomes of childhood cancer survivors needs consideration. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

The article presents the study that assesses the attitudes and knowledge of Faecal Immunochemical Test (FIT) users towards colorectal cancer (CRC) screening in the Netherlands. The topics discussed include the importance of mass CRC screening programmes in declining disease mortality and morbidity and the criteria set by the National Screening Committee in evaluating the screening's appropriateness.

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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) [ABSTRACT FROM AUTHOR]

Study Type - Outcomes (cohort sample) Level of Evidence 2b What's known on the subject? and What does the study add? The study compares the sexual function of men with low-risk prostate cancer who chose active surveillance (expectant management) with similar men who received radiation therapy or radical prostatectomy. The first group appeared to be sexually active more frequently and had less erectile dysfunction. The study was non-randomized. No other studies exist on the effect of active surveillance on sexual function vs other treatment methods. OBJECTIVE To compare sexual function of men with localized prostate cancer (PCa) on active surveillance (AS) with similar patients who received radical therapy., PATIENTS AND METHODS Two groups of men with screening-detected localized PCa were compared. The first were men on AS within the prospective protocol-based Prostate Cancer Research International: Active Surveillance study. The second were men participating in the European Randomized Study of Screening for Prostate Cancer study who had received radical prostatectomy (RP) or radiation therapy (RT)., Questionnaires were completed at two different timepoints after diagnosis or treatment (6 and 12-18 months). These contained 10 items on sexual function, the mental and physical component summary from the Short-Form 12-item health survey, the Center for Epidemiologic Studies Depression scale depression measure and the State Trait Anxiety Inventory general anxiety measure., Sexual function was compared between groups, and determinants were analysed in multivariable analysis, adjusting for baseline differences., RESULTS A total of 65-68% of men on AS, 35-36% of those who underwent RP, 36-37% of those who underwent RT and 36% of men in the RP and RT groups combined (combined Tx) were sexually active., A total of 20-30% of men in the AS group, 86-91% of men in the RP group, 56-60% of men in the RT group and 71-76% of men in the combined Tx group were sexually inactive as a result of erectile dysfunction., A total of 44-51% of men in the AS group, 96% of men in the RP group, 73-76% of men in the RT group and 84-85% of men in the combined Tx group who were sexually active had problems getting or keeping an erection., In multivariable analysis these differences were significant, except for AS vs RT., CONCLUSIONS Men with localized PCa on AS were more often sexually active than similar men who received radical therapy, especially RP. If not sexually active, this was less often attributable to erectile dysfunction for those on AS. If sexually active, this was less often associated with problems getting or keeping an erection for those on AS., The study was non-randomized; the latest advances in RP and RT might impact results. [ABSTRACT FROM AUTHOR]

In most Western countries, information on prenatal screening for Down syndrome is provided in the first-trimester of pregnancy. The purpose of this study was to examine whether this information should additionally be provided before pregnancy to improve the informed decision-making process. In an empirical study, we obtained data from pregnant women with respect to their preferences regarding information on prenatal screening preconceptionally. Questionnaire data (n = 510) showed that 55.7% of responding women considered participating in prenatal screening for Down syndrome before pregnancy. 28.0% of women possessed information on prenatal screening preconceptionally. 84.6% preferred not to receive information preconceptionally in retrospect. In an ethical analysis, we elaborated on these preferences by weighing pros and cons. We considered two arguments against the provision of information on prenatal screening preconceptionally: women's preference to receive information in a step-by-step manner, and the risk of providing a directive message. We identified three reasons supporting its provision preconceptionally: the likelihood of making an informed decision could, firstly, be increased by 'unchaining' the initial information from possible subsequent decisions, and, secondly, by providing women sufficient time to deliberate. Thirdly, the probability of equal access to prenatal screening may increase. To conclude with, we propose to incorporate an information offer on prenatal screening for Down syndrome in preconception care consultations. By offering information, instead of providing information, prospective parents are enabled to either accept or decline the information, which respects both their right to know and their right not-to-know. © 2012 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

Objective To assess ethnic differences in participation in prenatal screening for Down syndrome in the Netherlands. Methods Participation in prenatal screening was assessed for the period 1 January 2009 to 1 July 2009 in a defined postal code area in the southwest of the Netherlands. Data on ethnic origin, socio-economic background and age of participants in prenatal screening were obtained from the Medical Diagnostic Centre and the Department of Clinical Genetics. Population data were obtained from Statistics Netherlands. Logistic regression models were used to assess ethnic differences in participation, adjusted for socio-economic and age differences. Results The overall participation in prenatal screening was 3865 out of 15 093 (26%). Participation was 28% among Dutch women, 15% among those from Turkish ethnic origin, 8% among those from North-African origin, 15% among those from Aruban/Antillean origin and 26% among women from Surinamese origin. Conclusions Compared to Dutch women, those from Turkish, North-African, Aruban/Antillean and other non-Western ethnic origin were less likely to participate in screening. It was unexpected that women from Surinamese origin equally participated. It should be further investigated to what extent participation and non-participation in these various ethnic groups was based on informed decision-making. Copyright © 2010 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Study Type – Survey (prospective cohort) Level of Evidence 1b OBJECTIVE To investigate the levels of knowledge of prostate cancer and the perception of active surveillance (AS) in men on AS, as AS for early prostate cancer instead of radical treatment might partly solve the over-treatment dilemma in this disease, but might be experienced as a complex and contradictory strategy by patients. PATIENTS AND METHODS In all, 150 Dutch men recently diagnosed with early prostate cancer participating in a prospective protocol-based AS programme (PRIAS study) received questionnaires, including a 15-item measure on their general knowledge of prostate cancer, and open-ended questions on the most important disadvantages and advantages of AS, and on the specific perception of AS. We assessed knowledge scores and explored potentially associated factors, the stated (dis)advantages and specific perceptions. RESULTS The questionnaire response rate was 86% (129/150). Participants provided correct answers to a median (interquartile range) of 13 (12–14) of 15 (87%) knowledge items. Younger and higher educated men had higher knowledge scores. In line with a priori hypotheses, the most frequently reported advantage and disadvantage of AS were the delay of side-effects and the risk of disease progression, respectively. Specific negative experiences included the feeling of losing control over treatment decisions, distress at follow-up visits, and the desire for a more active participation in disease management. No conceptually wrong understandings or expectations of AS were identified. CONCLUSIONS We found adequate knowledge of prostate cancer levels and realistic perceptions of the AS strategy in patients with early prostate cancer and on AS. These findings suggest adequate counselling by the physician or patient self-education. [ABSTRACT FROM AUTHOR]

Objective To evaluate ethnic differences in considerations whether or not to participate in prenatal screening for Down syndrome and to relate these to differences in participation. Method The study population consisted of 270 pregnant women from Dutch, Turkish and Surinamese (African and South Asian) ethnic origin, attending midwifery or obstetrical practices in the Netherlands. Women were interviewed after booking for prenatal care. Considerations were assessed by one open-ended question and 18 statements that were derived from focus group interviews. Actual participation was assessed several months later. Results Women from ethnic minorities were less likely to participate in prenatal screening, which could be attributed to differences in age and religious identity. They more often reported acceptance of 'what God gives', low risk of having a child with Down syndrome and costs of screening as considerations not to participate in prenatal screening. They also reported many considerations in favour of participation, which did not differ from those of Dutch women but were less often consistent with actual participation in screening. Conclusions Women from ethnic minorities should not be stereotyped as being uninterested in prenatal screening, but should be better informed about the consequences of prenatal screening and Down syndrome. Copyright © 2009 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

The article presents a study which analyzes the decisional conflict, depression and anxiety of patients on active surveillance (AS) for prostate cancer treatment. It mentions the use of Decisional Conflict Scale (DCS), Center for Epidemiologic Studies Depression Scale (CES-D) and State-Trait Anxiety Inventory (STAI-6) for the assessment. Results of the multivariate analysis show that conflict is related to the role of physicians while depression and anxiety are related to neurotic personality.

OBJECTIVE To describe the prevalence of sexual dysfunction and evaluate risk factors in patients just diagnosed with non-muscle-invasive bladder cancer (NMI UC), who have the prospect of an intensive surveillance scheme by cysto-urethroscopy to detect tumour recurrences. PATIENTS AND METHODS We conducted a cross-sectional survey on 150 patients just diagnosed with primary or recurrent NMI UC. Patients were participating in a randomized clinical multicentre trial (CEFuB), comparing two surveillance schemes. Patients were asked to complete questionnaires at study entry 3 months before the start of the study-surveillance scheme (demographic characteristics, a validated visual analogue scale, and validated subset of questions on sexual function and performance derived from QLQ-BLS-24). The results were compared with those from an age-and gender-matched healthy population. RESULTS The response rate was 95% (142/150); 61% (87/142) of the respondents were sexually active in the previous 4 weeks after diagnosis, 66% (70/105) of men and 46% (17/37) of women. Although libido was not negatively affected, 54% (47/87) of the patients had a sexual dysfunction, and 23% (17/73) were afraid to inflict harm on their partner by sexual contact. Sexually active patients perceived a higher state of general health ( P = 0.03). CONCLUSIONS The prevalence of sexual dysfunction in patients with NMI UC is very high (54%) compared with an age- and gender-matched healthy population (20–45%). No predictors for sexual dysfunction were found. These patients and partners would benefit from proper sexual information in the outpatient clinic. [ABSTRACT FROM AUTHOR]

OBJECTIVE To assess the health-related quality of life (HRQoL) of long-term, disease-free prostate cancer survivors and compare it with that of prostate cancer survivors with diabetes mellitus (DM), and a Dutch normative population, as comorbidity can have a major impact on HRQoL in cancer survivors. PATIENTS AND METHODS The Eindhoven Cancer Registry was used to select all men diagnosed with prostate cancer from 1994 to 1998. Questionnaires on HRQoL (Short Form 36) and prostate specific problems (University of California, Los Angeles Expanded Prostate Cancer Index) were sent to 964 patients, and 780 (81%) responded. Excluding patients with disease progression, the sample comprised 525 with prostate cancer and 65 with both prostate cancer and DM. Survivors with DM were more likely to have other comorbid conditions at the time of survey besides DM than were those without DM (74% vs 60%, P = 0.05). At 5–10 years after diagnosis, patients with DM reported worse General Health Perceptions than patients without DM or the normative population (means 52, 61 and 63; P < 0.001). Patients with DM also reported worse Vitality scores (59 vs 63; P < 0.001) than the normative population. Regression analysis indicated that DM was negatively associated with General Health Perceptions (β = −0.13; P < 0.01) and Vitality (β = −0.12; P < 0.01). Survivors with DM did not report worse urinary and bowel function or bother, nor more sexual problems than those without DM. CONCLUSIONS Except for general health perceptions and vitality, the HRQoL of prostate cancer survivors with or without DM was comparable to a normative population. Survivorship selection can possibly explain, in part, why patients with DM did not report worse generic or disease-specific HRQoL than those without DM, as had been expected. [ABSTRACT FROM AUTHOR]

The article reports on results of a study of the impact of computed tomography (CT) screening for lung cancer on participants in a randomized controlled trial. A description of the experimental set-up and measurement method is provided. The study concludes that potential adverse effects of CT screening for lung cancer on health-related quality of life demonstrated no negative effects.

OBJECTIVE To compare, in patients with non-muscle-invasive low-grade (pTa/pT1, G1/G2) urothelial cell carcinoma of the urinary bladder, the perceived burden of flexible cystoscopy or surveillance by microsatellite analysis (MA) in voided urine, as such patients are normally recommended to adhere to regular cysto-urethroscopic surveillance (CUS). PATIENTS AND METHODS In all, 220 participants of a randomized trial comparing CUS and surveillance by MA were asked to complete questionnaires 1 week after cystoscopy or urine sample collection. We assessed the discomfort and pain reported during CUS, experiences with MA, and physical symptoms, medical consumption and general functioning in the week after CUS/urine sampling. RESULTS We analysed data from 732 questionnaires (197 patients) completed after CUS and 184 (67 patients) after collecting urine. The introduction of the cystoscope was reported to cause discomfort in 39% and pain in 35% of the responses to the questionnaires; the waiting time for the results of MA was reported as burdensome in 19%. Painful micturition was significantly more frequent in the week after CUS than after MA (30% and 12%, respectively). The frequency of fever (1% and 2%) and haematuria (7% and 6%) was similar in both groups. Older patients reported significantly less pain and discomfort from cystoscopy, and this was not related to having more previous cystoscopies. CONCLUSION CUS caused pain and discomfort in about a third of patients. The burden of MA appeared fully attributable to the waiting time for the test result. The present results are a further motivation in the search for less invasive surveillance tests. [ABSTRACT FROM AUTHOR]

Objective To develop a theoretical framework for analysing ethnic differences in determinants of participation and non-participation in prenatal screening for Down syndrome. Methods We applied Weinstein's Precaution Adoption Process (PAP) Model to the decision of whether or not to participate in prenatal screening for Down syndrome. The prenatal screening stage model was specified by reviewing the empirical literature and by data from seven focus group interviews with Dutch, Turkish and Surinamese pregnant women in the Netherlands. Results We identified 11 empirical studies on ethnic differences in determinants of participation and non-participation in prenatal screening for Down syndrome. The focus group interviews showed that almost all stages and determinants in the stage model were relevant in women's decision-making process. However, there were ethnic variations in the relevance of determinants, such as beliefs about personal consequences of having a child with Down syndrome or cultural and religious norms. Discussion The prenatal screening stage model can be applied as a framework to describe the decision-making process of pregnant women from different ethnic backgrounds. It provides scope for developing culturally sensitive, tailored methods to guide pregnant women towards informed decision-making on participation or non-participation in prenatal screening for Down syndrome. Copyright © 2007 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background. A delivery has a major impact on the health-related quality of life (HRQoL) of the new mother, especially on fatigue. A common complication during delivery that might have a relationship with maternal morbidity is blood loss. The objectives were to investigate fatigue and HRQoL in women after vaginal delivery (VD), elective caesarean section (CS) and emergency CS, and its relationship with postpartum hemoglobin (Hb) levels during the first 6 weeks postpartum. Methods. Some 141 patients (71 after VD, 36 after elective CS and 34 after emergency CS) completed the HRQoL questionnaires MFI and EQ-5D between 12 and 24 h after VD and 24-48 h after CS (t=0). At 1, 3 and 6 weeks postpartum these questionnaires were repeated, together with the SF36. Results. Patients after VD had higher mean physical HRQoL scores than after CS. The average period to reach full physical recovery was 3 weeks after VD, 6 weeks after elective CS, and >6 weeks after emergency CS. Mean mental HRQoL scores of the study groups were similar or even better compared to reference values. The significant correlation between Hb level and mean physical HRQoL scores found at t=0 had disappeared at 1 week postpartum. Conclusions. Results of this study provided insights into the natural course of fatigue and HRQoL postpartum. Important differences in fatigue and HRQoL scores were observed between the 3 modes of delivery. These HRQoL measures can be used in future clinical trials to assess the effects of interventions postpartum. [ABSTRACT FROM AUTHOR]

OBJECTIVES To determine how men treated for localized prostate cancer and who had permanent side-effects, and healthy controls, would value five descriptions of health states associated with side-effects of treatment for localized prostate cancer, hypothesising that patients would value the health states as less detrimental than men with no prostate cancer. PATIENTS, SUBJECTS AND METHODS In previous research, patients with prostate cancer reported high generic quality-of-life scores after primary treatment, despite side-effects; it was suggested that these patients accepted the side-effects, i.e. urinary, bowel and sexual dysfunction, as ‘part of the bargain’ because they felt they were saved from a life-threatening disease. Thus, we asked 54 men who had been treated for localized prostate cancer and had permanent side-effects, and 53 healthy controls, to value five descriptions of health states. All respondents valued all descriptions using two valuation methods, a visual analogue scale (VAS, range 0–100) and time trade-off (TTO, range 0–1). The respondent functioning was assessed using the EuroQol-5D, completed with items on urinary, bowel and sexual function. RESULTS Patients and healthy controls had similar valuations for nine of the 10 comparisons (five health states by two methods). Valuations in both groups resulted in the same ranking order of states on the TTO and one exchange in rank order on the VAS. CONCLUSIONS When asked to value five health states associated with side-effects of treatment for localized prostate cancer, there was no difference in the valuation of erectile, urinary and bowel dysfunction between patients with permanent side-effects after treatment and healthy controls. More likely explanations for the high generic quality-of-life scores after primary treatment for prostate cancer are a response shift and insensitivity of generic health-related quality-of-life measures. [ABSTRACT FROM AUTHOR]