Localized Prostate Cancer and Quality of Life: Screening, treatment and methodological issues

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.In westerse landen is prostaatkanker de meest prevalente maligniteit (vorm van kanker) onder mannen. In een vroeg stadium veroorzaakt prostaatkanker normaal gesproken geen pijn of enig ander symptoom. Het kan vroeg ontdekt worden door te testen op prostaat-specifiek antigeen (PSA). Sinds de jaren tachtig van de vorige eeuw wordt de PSA-test op grote schaal toegepast, hetgeen resulteerde in een toegenomen prevalentie van prostaatkanker. Overdiagnose, gedefinieerd als de ontdekking en daaropvolgende behandeling van prostaatkanker middels de PSA-test die anders niet gediagnosticeerd zou zijn tijdens het leven van de patiënt, wordt als een belangrijk potentieel nadeel van de PSA-test beschouwd. De toename in het aantal mannen dat in een vroeg stadium van prostaatkanker wordt gediagnosticeerd en vervolgens primarie behandeling ondergaat, gaat gepaard aan een toename in de prevalentie van bijeffecten van die behandeling. Bijeffecten betreffen met name erectiestoornissen en plasklachten na radicale prostatectomie (operatie), en erectiestoornissen en darmproblemen na externe radiotherapie. Dit proefschrift richt zich op de effecten van prostaatkankerdiagnose en primaire behandeling op de kwaliteit van leven van patiënten. In dit proefschrift beperkt ‘kwaliteit van leven’ (KvL) zich tot ‘gezondheidsgerelateerde kwaliteit van leven’ oftewel ‘gezondheidstoestand’, gedefinieerd als kwaliteit van leven in relatie tot ziekte en/of behandeling

The urinary-specific quality of life of multiple sclerosis patients: Dutch translation and validation of the SF-Qualiveen

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 0.8) 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.

Trajectories and predictors of women's health-related quality of life during pregnancy

The objective of this study was to identify distinct trajectories and their predictors of healthrelated quali

Screening for child abuse at emergency departments: a systematic review

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

Untangling the relationship between negative illness perceptions and worse quality of life in patients with advanced cancer:A study from the population-based PROFILES registry

Purpose Quality of life (QoL) is an important yet complex outcome of care in patients with advanced cancer. QoL is associated with physical and psychosocial symptoms and with patients’ illness perceptions (IPs). IPs are modifiable cognitive constructs developed to make sense of one’s illness. It is unclear how IPs influence patients’ QoL. A better understanding of this relationship can inform and direct high quality care aimed at improving patients’ QoL. We therefore investigated the mediating role of anxiety and depression in the association of IPs with QoL. Methods Data from 377 patients with advanced cancer were used from the PROFILES registry. Patients completed measures on IPs (BIPQ), QoL (EORTC QLQ-C30), and symptoms of anxiety and depression (HADS). Mediation analyses were conducted to decompose the total effect of IPs on QoL into a direct effect and indirect effect. Results All IPs but one (“Comprehensibility”) were negatively associated with QoL (p<0.001); patients with more negative IPs tended to have worse QoL. The effect was strongest for patients who felt that their illness affected their life more severely (“Consequences”), patients who were more concerned about their illness (“Concern”), and patients who thought that their illness strongly affected them emotionally (“Emotions”). Anxiety mediated 41–87% and depression mediated 39–69% of the total effect of patients’ IPs on QoL. Conclusion Negative IPs are associated with worse QoL. Anxiety and depression mediate this association. Targeting symptoms of anxiety and depression, through the modification of IPs, has the potential to improve QoL of patients with advanced cancer

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

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

Associations between Maternal Health-Related Quality of Life during Pregnancy and Birth Outcomes: The Generation R Study

The objective of this study was to assess associations between maternal health-related quality of life (HRQoL) in early, mid-, and late pregnancy and birth outcomes and to assess the differences in birth outcomes between subgroups of mothers reporting relatively "low" and relatively "high" HRQoL. HRQoL was measured by the 12-item Short Form Health Survey in early (n = 6334), mid- (n = 6204), and late pregnancy (n = 6048) in a population-based mother and child cohort; Physical and Mental Component Summary (PCS/MCS) scores were calculated. Birth outcomes included pregnancy duration, preterm birth, birth weight, low birth weight, and small for gestational age. We defined very high PCS/MCS scores as the >90th percentile and very low score as the <10th percentile. The lower PCS score in late pregnancy was significantly associated with a higher chance of having small-for-gestational-age birth (per 10 points: OR = 1.20, 95% CI: 1.08, 1.33, p value = 0.0006). In early, mid-, and late pregnancy, the subgroup mothers with a low MCS score had infants with a lower average birth weight than those with very high scores (p < 0.05). The association between higher physical HRQoL in late pregnancy and a higher chance of having small-for-gestational-age birth needs further research. The role of mother's mental HRQoL during pregnancy and the potential consequences for the child require further study

The validation of the Dutch SF-Qualiveen, a questionnaire on urinary-specific quality of life, in spinal cord injury patients

Background: Optimizing the patients' quality of life is one of the main goals in the urological management of spinal cord injury (SCI) patients. In this study we validated the Dutch SF-Qualiveen, a short questionnaire that measures the urinary-specific quality of life, in SCI patients. No such measure is yet available for this patient group. Methods: In 2015-2016 SCI patients with urinary symptomatology who visited the outpatient clinics of Urology at the Erasmus Medical Centre and Rehabilitation at Rijndam Revalidation completed the SF-Qualiveen and UDI-6 during the visit and 1-2 weeks later. The UDI-6, a urinary tract symptom inventory, served as gold standard. Controls, recruited from the Otolaryngology outpatient clinic, completed the questionnaires once. Content-, construct-, and criterion validity and reliability (internal consistency and reproducibility) of the SF-Qualiveen were determined. Results: Fifty seven SCI patients and 50 controls were included. 12 SCI patients asserted that the SF-Qualiveen covered their bladder problems (good content validity). Patients' SF-Qualiveen scores being positively associated with severity of urinary symptoms and patients' scores being higher than those of controls indicated good construct validity. The positive association that was found between SF-Qualiveen and UDI-6 in patients (r = 0.66-0.67, P < 0.001) and controls (r = 0.63, P < 0.001) confirmed good criterion validity. Internal consistency (Cronbach's alpha 0.89-0.92) and reproducibility (intraclass correlation coefficient 0.94) of the SF-Qualiveen were good. Conclusions: The Dutch SF-Qualiveen is a valid and reliable tool to measure the urinary-specific quality of life in SCI patients

Parents' preferences for vaccinating daughters against human papillomavirus in the Netherlands: A discrete choice experiment

Background: To generate knowledge about potential improvements to human papillomavirus (HPV) vaccination information and organization strategies, we assessed how aspects of HPV vaccination are associated with parents' preferences for their daughters' uptake, and which trade-offs parents are willing to make between these aspects. Methods. A discrete choice experiment (DCE) was conducted among parents with a daughter aged 10-12 years. Panel mixed logit regression models were used to determine parents' preferences for vaccination. Trade-offs were quantified between four vaccination programme aspects: degree of protection against cervical cancer, duration of protection, risk of serious side-effects, and age of vaccination. Results: Total response rate was 302/983 (31%). All aspects influenced respondents' preferences for HPV vaccination (p < 0.05). Respondents preferred vaccination at age 14 years instead of at a younger age. Respondents were willing to trade-off 11% of the degree of protection to obtain life-time protection instead of 25 years. To obtain a vaccination with a risk of serious side-effects of 1/750,000 instead of 1/150,000, respondents were willing to trade-off 21%. Conclusions: Uptake may rise if the age ranges for free HPV vaccinations are broadened. Based on the trade-offs parents were willing to make, we conclude that uptake would increase if new evidence indicated outcomes are better than are currently understood, particularly for degree and duration of protection

How distressing is referral to colposcopy in cervical cancer screening?

Objective Referral for colposcopy because of abnormal Pap test results is likely to be distressing, but the extent and duration of these effects are unknown. We aimed to fill this gap. Methods We conducted a prospective observational study at two departments of Obstetrics and Gynecology (an academic and a non-academic setting). Women referred for colposcopy completed questionnaires before colposcopy, and at 1, 3, and 6 months afterwards. A reference group of 706 screen participants, aged 29-60 years old, was included and completed questionnaires once. Main outcome measures were generic health-related quality of life (HRQoL), assessed through the EQ-5D and the SF-12 physical and mental scores (PCS-12 and MCS-12); anxiety as assessed by STAI-6, and screen-specific anxiety as assessed by the psychological consequences questionnaire (PCQ). Results 154 women responded to the questionnaire, of whom 132 were included in the analyses. Histological results were CIN 1 in 17/115 women (15%) and CIN 2 + in 62 (54%). In 36 women (31%) there was no histologically confirmed neoplasia. Before colposcopy physical HRQoL scores were similar or slightly better than in the reference group, while mental HRQoL (MSC-12) and (screen-specific) anxiety were worse (p < 0.001). Irrespective of CIN-grades, anxiety washed out during follow-up (p < 0.001), with changes being clinically relevant. Conclusions Referral for gynecological evaluation because of abnormal PAP-test results was distressing. Anxiety - and not the physical burden of management - seemed to be the most bothersome to women. For all CIN-grades, distress disappeared over six months following colposcopy, suggesting a reassuring effect of gynecological mana