Korfage, I.J.

What influences the decision to participate in colorectal cancer screening with faecal occult blood testing and sigmoidoscopy? (Article)

2013-04-08T00:00:00Z

Introduction: Uptake is an important determinant of the effectiveness of population-based screening. Uptake of colorectal cancer (CRC) screening generally remains sub-optimal. Aim: To determine factors influencing the decision whether to participate or not among individuals invited for faecal occult blood test (FOBT) or flexible sigmoidoscopy (FS) screening. Methods: A questionnaire was sent to a stratified random sample of individuals aged 50-74, previously invited for a randomised CRC screening trial offering FOBT or FS, and a reference group from the same population not previously invited (screening naïve group). The questionnaire assessed reasons for (non)-participation, individuals' characteristics associated with participation, knowledge, attitudes and level of informed choice. Results: The response rate was 75% (n = 341/452) for CRC screening participants, 21% (n = 676/3212) for non-participants and 38% (n = 192/500) for screening-naïve individuals. The main reasons for FOBT and FS participation were acquiring certainty about CRC presence and possible early CRC detection. Anticipated regret and positive attitudes towards CRC screening were strong predictors of actual participation and intention to participate in a next round. The main reason for non-participation in FOBT screening was lack of abdominal complaints. Non-participation in FS screening was additionally influenced by worries about burden. Eighty-one percent of participants and 12% of non-participants made an informed choice on participation. Conclusion: Only 12% of non-participants made an informed choice not to participate. These results imply that governments and/or organizations offering screening should focus on adequately informing and educating target populations about the harms and benefits of CRC screening. This may impact uptake of CRC screening.

Parental Decisional Strategies Regarding HPV Vaccination Before Media Debates: A Focus Group Study (Article)

2013-04-08T00:00:00Z

Before the introduction of the human papillomavirus (HPV) vaccine, decisional strategies and factors that could guide HPV vaccination intentions were explored. The authors conducted 4 focus group discussions with 36 parents of children 8-15 years of age. Three groups consisted primarily of Dutch parents and 1 group of only Turkish parents. Discussions followed a semi-structured question route. Results showed that some parents used an approach of systematically seeking information as a way to prepare a decision, whereas others merely relied on trust in the message source. In general, parents believed that it was important to protect their child against negative outcomes that could result from vaccinating or not, and they felt that it is their responsibility to decide about uptake. Perceived susceptibility, vaccine effectiveness, and possibility of serious side effects were most important in the HPV vaccination decision-making process. In conclusion, parents perceived a lack of information and felt insecure about the vaccine's safety and effectiveness. This may result in ambivalent feelings toward HPV vaccination, which, in turn, may lead to postponing decisions about uptake. To facilitate informed decision making, which requires central processing, personally relevant messages about the knowns and unknowns regarding the effects of HPV vaccination should be provided.

Recognising the importance of 'family time-out' in consultations: An exploratory qualitative study (Article)

2013-02-12T00:00:00Z

Objectives: Patients are often accompanied by family or companions during consultations, but little is known about how this might influence the process. We explored how the presence of a companion in a consultation contributes to communication and the decision-making process. Design: Observational study. Setting: A teaching hospital and a district general hospital in south-west England. Participants: 31 patients and their physicians were observed during consultations in which decisions to undergo palliative chemotherapy were made. Each patient was accompanied by at least one companion. Outcome measures: Communication patterns between physicians, patients and companions. Results: In addition to standard patient/physician interactions, patients and companions were often found to discuss medical information and exchange opinions between themselves without the physician actively participating. We called these instances 'family timeout'. On the occasion of disagreement between patients and companions about preferred treatment options, physicians and patients were able to agree the decision while acknowledging the differences in opinion. Conclusions: Instances of 'family time-out' may contribute to better consultation outcomes because they are understood and supported by the patient's social system. This study highlights the potentially important role of exchanges between patients and companions during consultations and how physicians may benefit from observation of such exchanges. We recommend testing the value of making space for family time-out during consultations. Also, we recommend further study into the medical ethics of family time-out. While the focus here is on palliative chemotherapy, this finding has implications for other consultations, particularly those involving difficult treatment decisions.

Quality-of-life effects of prostate-specific antigen screening (Article)

2012-08-16T00:00:00Z

Background: After 11 years of follow-up, the European Randomized Study of Screening for Prostate Cancer (ERSPC) reported a 29% reduction in prostate-cancer mortality among men who underwent screening for prostate-specific antigen (PSA) levels. However, the extent to which harms to quality of life resulting from overdiagnosis and treatment counterbalance this benefit is uncertain. Methods: On the basis of ERSPC follow-up data, we used Microsimulation Screening Analysis (MISCAN) to predict the number of prostate cancers, treatments, deaths, and quality-adjusted life-years (QALYs) gained after the introduction of PSA screening. Various screening strategies, efficacies, and quality-of-life assumptions were modeled. Results: Per 1000 men of all ages who were followed for their entire life span, we predicted that annual screening of men between the ages of 55 and 69 years would result in nine fewer deaths from prostate cancer (28% reduction), 14 fewer men receiving palliative therapy (35% reduction), and a total of 73 life-years gained (average, 8.4 years per prostate-cancer death avoided). The number of QALYs that were gained was 56 (range, -21 to 97), a reduction of 23% from unadjusted life-years gained. To prevent one prostate-cancer death, 98 men would need to be screened and 5 cancers would need to be detected. Screening of all men between the ages of 55 and 74 would result in more life-years gained (82) but the same number of QALYs (56). Conclusions: The benefit of PSA screening was diminished by loss of QALYs owing to postdiagnosis long-term effects. Longer follow-up data from both the ERSPC and quality-of-life analyses are essential before universal recommendations regarding screening can be made. (Funded by the Netherlands Organization for Health Research and Development and others.) Copyright

Sexual function with localized prostate cancer: Active surveillance vs radical therapy (Article)

2012-01-20T00:00:00Z

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. © 2012 THE AUTHORS. BJU INTERNATIONAL

Selecting men diagnosed with prostate cancer for active surveillance using a risk calculator: A prospective impact study (Article)

2011-11-24T00:00:00Z

Study Type - Prognosis (cohort series) Level of Evidence2a What's known on the subject? and What does the study add? The present study is one of the first to investigate urologists' and patients' compliance with recommendations based on a risk calculator that calculates the probability of indolent prostate cancer. A threshold was set for a recommendation of active surveillance vs active treatment. Active surveillance recommendations based on a prostate cancer risk calculator were followed by most patients, but 30% with active treatment recommendations chose active surveillance instead. This indicates that the threshold may be too high for urologists and patients. OBJECTIVES: To assess urologists' and patients' compliance with treatment recommendations based on a prostate cancer risk calculator (RC) and the reasons for non-compliance. To assess the difference between patients who were compliant and non-compliant with recommendations based on this RC. PATIENTS AND METHODS: Eight urologists from five Dutch hospitals included 240 patients with prostate cancer (PCa), aged 55-75 years, from December 2008 to February 2011. The urologists used the European Randomized Study of Screening for Prostate Cancer RC which predicts the probability of potentially indolent PCa (P[indolent]), using serum prostate-specific antigen (PSA), prostate volume and pathological findings on biopsy. Inclusion criteria were PSA <20ng/mL, clinical stage T1 or T2a-c disease, <50% positive sextant biopsy cores, ≤20mm cancer tissue, ≥40mm benign tissue and Gleason ≤3 + 3. If the P(indolent) was >70%, active surveillance (AS) was recommended, and active treatment (AT) otherwise. After the treatment decision, patients completed a questionnaire about their treatment choice, related (dis)advantages, and validated measurements of other factors, e.g. anxiety. RESULTS: Most patients (45/55, 82%) were compliant with an AS recommendation. Another 54 chose AS despite an AT recommendation (54/185, 29%). The most common reason for non-compliance with AT recommendations by urologists was the patient's preference for AS (n= 30). These patients most often reported the delay of physical side effects of AT as the main advantage (n= 19). Those who complied with AT recommendations had higher mean PSA levels (8 vs 7ng/mL, P= 0.02), higher mean amount of cancer tissue (7 vs 3mm, P < 0.001), lower mean P(indolent) (36% vs 55%, P < 0.001), and higher mean generic anxiety scores (42 vs 38, P= 0.03) than those who did not comply. CONCLUSIONS: AS recommendations were followed by most patients, while 29% with AT recommendations chose AS instead. Although further research is needed to validate the RC threshold, the current version is already useful in treatment decision-making in men with localized PCa. © 2011 THE AUTHORS. BJU INTERNATIONAL

Informed choice on Pap smear still limited by lack of knowledge on the meaning of false-positive or false-negative test results (Article)

2011-11-01T00:00:00Z

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.

Detection of child abuse in emergency departments: A multi-centre study (Article)

2011-05-01T00:00:00Z

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.

Deciding on PSA-screening - Quality of current consumer information on the Internet (Article)

2010-11-01T00:00:00Z

Purpose of the study: Given that screening for prostate cancer has the potential to reduce prostate cancer mortality at the expense of considerable overdiagnosis and overtreatment, the availability of core consumer information - correct, balanced and supportive of autonomous decision-making - is a must. We assessed the quality of consumer information available through the Internet per November 2009 and its possible contribution to informed decision-making by potential screenees. Methods: Consumer information on PSA-screening was sought through the Internet in November 2009. Materials had to be targeted at potential consumers, offered by not-for-profit organisations, released in 2005 or after, in English or Dutch. Per material 2 of the authors assessed independently from each other whether standardised pre-defined topics were addressed, whether the content was correct and which approach was taken towards the decision-making process about uptake. Results: Twenty-three materials were included, of which 11 were released (shortly) after the results of 2 large randomized-controlled trials (RCTs) that evaluated the effectiveness of screening for prostate cancer had been published in March 2009. That a PSA-test result can be abnormal because of non-cancerous conditions (false positive) and that it may miss prostate cancer (false negative) was not addressed in 2/23 and 8/23 materials, respectively. The risk of overdiagnosis and overtreatment was not mentioned in 6 out of 23. PSA-screening was presented as a usual thing to do in some materials, whereas other materials emphasised the voluntary nature of PSA-screening ('it is your decision'). The content of 19/23 materials was considered sufficiently informative according to the pre-defined criteria, 12/23 materials were considered supportive of informed decision-making by men. Conclusions: Most materials of not-for-profit organizations supplied adequate information about PSA-screening, whilst the degree of persuasion towards uptake reflected variations in opinions on men's autonomy regarding their own health.

Girls’ preferences for HPV vaccination: A discrete choice experiment (Article)

2010-09-24T00:00:00Z

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.

Prostate cancer survivors who would be eligible for active surveillance but were either treated with radiotherapy or managed expectantly: Comparisons on long-term quality of life and symptom burden (Article)

2010-03-01T00:00:00Z

OBJECTIVE To assess and identify factors associated with the long-term health-related quality of life (HRQL) of prostate cancer survivors managed expectantly, as patients with low-risk prostate cancer can be managed with active surveillance (AS), but research on associated long-term HRQL is scarce. PATIENTS AND METHODS From the population-based Eindhoven Cancer Registry, 71 men managed with AS were matched with 71 survivors who had similar demographic and clinical characteristics but treated with external beam radiotherapy (RT). All were diagnosed between 1994 and 1998. HRQL data were collected 5-10 years after diagnosis. Patients completed generic- (Short Form-36) and cancer-specific (Quality of Life - Cancer Survivors) HRQL instruments, and symptom burden (Expanded Prostate Cancer Index, Sexual Activity) questionnaires. RESULTS Patients on AS were comparable to those treated with RT for most generic- and disease-specific HRQL dimensions. Patients treated with RT had poorer mean (sd) bowel function scores, of 87.1 (13.1) vs 92.8 (10.7) (P < 0.001), more bother with bowel function, at 85.0 (16.4) vs 93.7 (10.1) (P < 0.001), and more problems with getting an erection (68% vs 47%, P = 0.005). Multivariate regression analyses (corrected for comorbidity and clinical disease progression) indicated that the management strategy independently predicted differences in physical functioning, bodily pain, spiritual and total well-being, and bowel function and bowel bother. CONCLUSIONS Patients managed expectantly at initial diagnosis (AS) have comparable HRQL and a lower symptom burden than patients treated with RT up to 10 years after the diagnosis.

Informed decision making on PSA testing for the detection of prostate cancer: An evaluation of a leaflet with risk indicator (Article)

2010-02-01T00:00:00Z

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.

Disease insight and treatment perception of men on active surveillance for early prostate cancer (Article)

2010-02-01T00:00:00Z

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.

Anxiety and borderline PAP smear results (Article)

2010-01-01T00:00:00Z

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.

Screening for child abuse at emergency departments: a systematic review (Article)

2009-11-11T00:00:00Z

Introduction: Child abuse is a serious problem worldwide and can be difficult to detect. Although children who experience the consequences of abuse will probably be treated at an emergency department, detection rates of child abuse at emergency departments remain low. OBJECTIVE: To identify effective interventions applied at emergency departments that significantly increase the detection rate of confirmed cases of child abuse. DESIGN: This review was carried out according to the Cochrane Handbook. Two reviewers individually searched Pubmed, The Cochrane Library, EMBASE, Web of Science, and CINAHL for papers that met the inclusion criteria. RESULTS: Fifteen papers describing interventions were selected and reviewed; four of these were finally included and assessed for quality. In these studies the intervention consisted of a checklist of indicators of risk for child abuse. After implementation, the rate of detected cases of suspected child abuse increased by 180% (weighted mean in 3 studies). The number of confirmed cases of child abuse, reported in two out of four studies, showed no significant increase. CONCLUSIONS: Interventions at emergency departments to increase the detection rate of cases of confirmed child abuse are scarce in the literature. Past study numbers and methodology have been inadequate to show conclusive evidence on effectiveness.

Prostate cancer-specific anxiety in Dutch patients on active surveillance: Validation of the memorial anxiety scale for prostate cancer (Article)

2009-10-01T00:00:00Z

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: χ2 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.

Health-related quality of life in cervical cancer survivors: a population-based survey (Article)

2009-07-30T00:00:00Z

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.

Editorial comment on: Time, symptom burden, androgen deprivation, and self-assessed quality of life after radical prostatectomy or watchful waiting: the Randomized Scandinavian Prostate Cancer Group Study Number 4 (SPCG-4) clinical trial. (Article)

2009-07-30T00:00:00Z

Health-Related Quality of Life in Cervical Cancer Survivors: A Population-Based Survey (Article)

2009-04-01T00:00:00Z

Erectile dysfunction and mental health in a general population of older men (Article)

2009-02-09T00:00:00Z

Introduction. Erectile dysfunction (ED) is more prevalent with increasing age. Previous studies showed that ED was negatively associated with mental health (MH) in specific patient groups. Aim. To examine the association, and potential mediating factors, between ED and MH in healthy elderly men. Main Outcome Measures. ED was defined as (almost) always having problems in achieving or maintaining an erection if desired, or not being sexually active because of erectile problems. MH was assessed with 36-item Short-Form Health Survey scale MH5 with five items on, e.g., being happy or depressed (range 0-100). Potential mediators between ED and MH were satisfaction with and importance attached to sex life. Methods. The study population consisted of a consecutive sample of 3,810 participants from the European Randomized Study of Screening for Prostate Cancer, aged 57-78 years, who had screened negatively for prostate cancer. Associations between ED, potential mediating factors, and MH were tested by analysis of variance and analysis of covariance. Results. Covariance analysis, adjusted for age, comorbidity, and use of erectile aids, showed that men with ED had significantly lower MH scores (80.8 ± 1.2) than men without ED (83.7 ± 1.2; P < 0.001). ED was also associated with the potential mediator "satisfaction with sex life" but not with "importance attached to sex life." Men with ED were significantly more often dissatisfied with their sex lives (P < 0.001). Adjustment for satisfaction with sex life, but not for importance attached to sex life, reduced the strength of the association (β value) between ED and poor MH from 2.88 to -0.84. Conclusions. ED was associated with poorer MH. Satisfaction with sex life, but not importance attached to sex life, may play a mediating role in this association. These results suggest that if men with ED can be helped to be satisfied with their sex lives despite ED, MH can be preserved.

Bowel, Urinary, and Sexual Problems Among Long-Term Prostate Cancer Survivors: A Population-Based Study (Article)

2009-01-01T00:00:00Z

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.

Does “Normal” Aging Imply Urinary, Bowel, and Erectile Dysfunction? A General Population Survey (Article)

2008-10-25T00:00:00Z

We assessed if urinary, bowel, and sexual dysfunction and associated bother were part of the “normal” aging process in the general male Dutch population. Methods Randomly selected participants of a screening trial were mailed a questionnaire on dysfunction and bother in the urinary, bowel, and sexual domains. A Dutch version of the Expanded Prostate Cancer Index Composite (EPIC) was used. Results Three thousand eight hundred ten (3810) men responded (81%), mean age 67 years, range 58 to 78. The prevalence of urinary dysfunction was low, and although the difference between younger versus older men was significant (P <0.001), it did not exceed the minimal important difference. Bowel dysfunction and bother were not related to age. Erectile dysfunction was reported by 19%, ranging from 12% in the youngest to 26% in the oldest group (P <0.001). The overall use of erectile aids was negatively associated with the satisfaction with sex life and positively with the importance attached to it (P <0.001), but not with age or sexual activity. Conclusions Urinary and bowel dysfunction were not part of the “normal” aging process. Erectile dysfunction was significantly more prevalent in older men. In men treated for localized prostate cancer, decreasing urinary or bowel function is thus not attributable to age, but may well be related to prior treatment. Decreasing erectile function, however, may be attributable to other causes as wellt. These data provide a benchmark for urologic functioning in men after treatment relative to age-related patterns, and will enable better interpretation of treatment outcomes.

Women show mixed intentions regarding the uptake of HPV vaccinations in pre-adolescents: a questionnaire study. (Article)

2008-06-11T00:00:00Z

BACKGROUND: The general introduction of HPV vaccination, as the primary prevention of cervical cancer, is the subject of debate in the Netherlands. METHODS: We explored intentions towards HPV vaccinations for pre-adolescents in 1367 women; screen invitees, women with abnormal smears, cervical cancer survivors, and a reference group. RESULTS: 76% (screen invitees) to 81% (women with abnormal smears) said 'yes' to vaccinations, often motivated by 'prevention is better than cure'. Multivariate logistic regression showed that younger women were more positive than older women. Intentions were not related to education, job, marital status or having children. Both women who were pro and anti-HPV vaccinations expressed concerns about long-term effectiveness and side effects. Comments such as 'cervical cancer runs in the family' demonstrated confused knowledge. CONCLUSIONS: Most respondents had a positive intention towards HPV vaccinations, but intention was lower than actual childhood vaccination uptake in the current National Immunisation Programme (95%). Uncertainties about long-term effectiveness and side effects were the major causes of doubt.

Response shift due to diagnosis and primary treatment of localized prostate cancer: a then-test and a vignette study (Article)

2007-12-01T00:00:00Z

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.

The structural equation modeling technique did not show a response shift, contrary to the results of the then test and the individualized approaches (Article)

2007-04-01T00:00:00Z

Side-effects of treatment for localized prostate cancer: Are they valued differently by patients and healthy controls? (Article)

2007-04-01T00:00:00Z

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.

Localized Prostate Cancer and Quality of Life: Screening, treatment and methodological issues (Doctoral Thesis)

2005-11-23T00:00:00Z

In Western countries prostate cancer is the most prevalent malignancy in males. In its early stage prostate cancer usually does not cause any pain or other symptoms. It can be detected early by testing for prostate-specific antigen (PSA). Since the 1980s the PSA-test has been applied at a large scale, resulting in an increased prevalence of prostate cancer. Overdiagnosis, defined as the detection and subsequent treatment of prostate cancer through PSA-testing that otherwise would not have been diagnosed within the patients’ lifetime, is considered a major potential drawback of PSA-testing. The increase in the number of men being diagnosed with prostate cancer – especially in its early stage – and subsequently receiving primary treatment is associated with a proportional rise in the prevalence of side effects. Side-effects mainly concern erectile and urinary dysfunction after radical prostatectomy, and erectile and bowel dysfunction after external radiotherapy. This thesis focuses on the effects of prostate cancer diagnosis and primary treatment on quality of life of patients. ‘Quality of life’ (QoL) will be restricted to ‘health-related quality of life’ or ‘health status’, defined as quality of life relating to disease and/or treatment.

Measuring disease specific quality of life in localized prostate cancer: The Dutch experience (Article)

2003-06-01T00:00:00Z

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 αs >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.