General Dutch Population Research Articles

Psychosexual development, sexual functioning and sexual satisfaction in long-term childhood cancer survivors: DCCSS-LATER 2 sexuality substudy.

Childhood cancer may negatively impact childhood cancer survivors' (CCS) sexuality. However, this is an understudied research area. We aimed to describe the psychosexual development, sexual functioning and sexual satisfaction of CCS, and identify determinants for these outcomes. Secondarily, we compared the outcomes of a subsample of emerging adult CCS to the Dutch general population. From the Dutch Childhood Cancer Survivor Study LATER cohort (diagnosed 1963-2001), 1912 CCS (18-71years, 50.8% male) completed questions on sexuality, psychosocial development, body perception, mental and physical health. Multivariable linear regressions were used to identify determinants. Sexuality of CCS age 18-24 (N=243) was compared to same-aged references using binomial tests and t-tests. One third of all CCS reported hindered sexuality due to childhood cancer, with insecure body the most often reported reason (44.8%). Older age at study, lower education, surviving central nervous system cancer, poorer mental health and negative body perception were identified as determinants for later sexual debut, worse sexual functioning and/or sexual satisfaction. CCS age 18-24 showed significantly less experience with kissing (p=0.014), petting under clothes (p=0.002), oral (p=0.016) and anal sex (p=0.032) when compared to references. No significant differences with references were found for sexual functioning and sexual satisfaction, neither among female CCS nor male CCS age 18-24. Emerging adult CCS reported less experience with psychosexual development, but similar sexual functioning and sexual satisfaction compared to references. We identified determinants for sexuality, which could be integrated in clinical interventions for CCS at risk for reduced sexuality.

The prevalence of anxiety and depression symptoms (ADS), persistent and chronic ADS among the adult general population and specific subgroups before and during the COVID-19 pandemic until December 2021

BackgroundIt is unclear to what extent the prevalence of moderate and severe anxiety and depression symptoms (ADS) is higher during the first 20 months after the COVID-19 outbreak than before the outbreak. The same holds for persistent and chronic ADS among the adult general population and subgroups (such as employed, minorities, young adults, work disabled). MethodsData were extracted from six surveys conducted with the Dutch longitudinal LISS panel, based on a traditional probability sample (N = 3493). Biographic characteristics and ADS (MHI-5 scores) were assessed in March–April 2019, November–December 2019, March–April 2020, November–December 2020, March–April 2021, and November–December 2021. Generalized estimating equations were conducted to examine differences in the prevalence of post-outbreak ADS, persistent and chronic ADS compared to the pre-outbreak prevalence in similar periods. The Benjamini-Hochberg correction for multiple testing was applied. ResultsAmong the general population chronic moderate ADS increased significantly but slightly in the period March–April 2020 to March–April 2021 compared to a similar period before the pandemic (11.9 % versus 10.9 %, Odds Ratio = 1.11). In the same period a somewhat larger significant increase in chronic moderate ADS was observed among 19–24 years old respondents (21.4 % versus 16.7 %, Odds Ratio = 1.35). After the Benjamini-Hochberg correction several other differences were no longer significant. LimitationsNo other mental health problems were assessed. ConclusionsThe Dutch general population and most of the assessed subgroups were relatively resilient given the limited increase or absence of increases in (persistent and chronic) ADS. However, young adults suffered from an increase of chronic ADS.

Predicted versus CT-derived total lung volume in a general population: The ImaLife study.

Predicted lung volumes based on the Global Lung Function Initiative (GLI) model are used in pulmonary disease detection and monitoring. It is unknown how well the predicted lung volume corresponds with computed tomography (CT) derived total lung volume (TLV). The aim of this study was to compare the GLI-2021 model predictions of total lung capacity (TLC) with CT-derived TLV. 151 female and 139 male healthy participants (age 45-65 years) were consecutively selected from a Dutch general population cohort, the Imaging in Lifelines (ImaLife) cohort. In ImaLife, all participants underwent low-dose, inspiratory chest CT. TLV was measured by an automated analysis, and compared to predicted TLC based on the GLI-2021 model. Bland-Altman analysis was performed for analysis of systematic bias and range between limits of agreement. To further mimic the GLI-cohort all analyses were repeated in a subset of never-smokers (51% of the cohort). Mean±SD of TLV was 4.7±0.9 L in women and 6.2±1.2 L in men. TLC overestimated TLV, with systematic bias of 1.0 L in women and 1.6 L in men. Range between limits of agreement was 3.2 L for women and 4.2 L for men, indicating high variability. Performing the analysis with never-smokers yielded similar results. In conclusion, in a healthy cohort, predicted TLC substantially overestimates CT-derived TLV, with low precision and accuracy. In a clinical context where an accurate or precise lung volume is required, measurement of lung volume should be considered.

The 10-item Adverse Childhood Experience International Questionnaire (ACE-IQ-10): psychometric properties of the Dutch version in two clinical samples

ABSTRACT Background: Childhood trauma has been associated with adult mental disorders, physical illness, and early death. The World Health Organization (WHO) supported the development of the Adverse Childhood Experiences International Questionnaire (ACE-IQ) to explore childhood trauma in adults. We report the psychometric properties of the Dutch version of the Adverse Childhood Experiences International Questionnaire 10 items version (ACE-IQ-10) in the Netherlands. Methods: Confirmatory factor analysis was performed in two convenience samples of consecutive patients presenting at an outpatient specialty mental health setting between May 2015 and September 2018: Sample A (N = 298), patients with anxiety and depressive disorders; and sample B (N = 234), patients with Somatic Symptom and Related Disorders (SSRD). Criterion validity of the scales of the ACE-IQ-10 was explored by their correlation with the PHQ-9, the GAD-7, and the SF-36. The correlation between reporting sexual abuse on the ACE-IQ-10 and in a face-to-face interview was assessed as well. Results: We found support for a two-factor structure in both samples: one for directly experiencing childhood abuse and another for household dysfunction, but also support for using the total score. The correlation between reporting a sexual trauma in childhood at face-to-face interview and the sexual abuse item of the ACE-IQ-10 was r = .98 (p < .001). Conclusions: The current study provides evidence on the factor structure, reliability, and validity of the Dutch ACE-IQ-10 in two Dutch clinical samples. It shows clear potential of the ACE-IQ-10 for further research and clinical use. Further studies are needed to assess the ACE-IQ-10 in the Dutch general population.

Long Term Health Related Quality of Life After Acute Type B Aortic Dissection: a Cross Sectional Survey Study

Acute type B aortic dissection (ATBD) is a rare yet serious cardiovascular event that potentially has an impact on health related quality of life (HRQoL). However, long term follow up data on this topic are scarce. This study aimed to review the long term HRQoL among patients treated for ATBD. In this multicentre, cross sectional survey study, consecutive treated patients with ATBD between 2007 and 2017 in four referral centres in the Netherlands were retrospectively included and baseline data were collected. Between 2019 and 2021 the 36 Item Short Form Survey (SF-36) was sent to all surviving patients (n= 263) and was compared with validated SF-36 scores in the Dutch general population stratified by age and sex. In total, 144 of 263 surviving patients completed the SF-36 (response rate 55%). Median (IQR) age was 68 (61, 76) years at completion of the questionnaire, and 40% (n= 58) were female. Initial treatment was medical in 55% (n= 79), endovascular in 41% (n= 59), and surgical in 4% (n= 6) of ATBD patients. Median follow up time was 6.1 (range 1.7-13.9; IQR 4.0, 9.0) years. Compared with the general population, patients scored significantly worse on six of eight SF-36 subdomains, particularly physical domains. Apart from bodily pain, there were no substantial differences in HRQoL between male and female ATBD patients. Compared with sex matched normative data, females scored significantly worse on five of eight subdomains, whereas males scored significantly lower on six subdomains. Younger patients aged 41-60 years seemed more severely impaired in HRQoL compared with the age matched general population. Treatment strategy did not influence HRQoL outcomes. Follow up time was associated with better Physical and Mental Component Summary scores. Long term HRQoL was impaired in ATBD patients compared with the Dutch general population, especially regarding physical status. This warrants more attention for HRQoL during clinical follow up. Rehabilitation programmes including exercise and physical support might improve HRQoL and increase patients' health understanding.

Use of hospital care among Dutch diabetes patients.

To provide insight into healthcare resource utilization and hospital expenditure of patients treated for diabetes in Dutch hospitals. We conducted an observational cohort study of 193 840 patients aged ≥18 years and treated for diabetes mellitus in 65 Dutch hospitals in 2019 to 2020, using real-world reimbursement data. Consultations, hospitalizations, technology use, total hospital and diabetes care costs (encompassing all care for diabetes itself) were assessed during 1-year follow-up. In addition, expenditure was compared with that in the general Dutch population. Total hospital costs for all patients with diabetes were €1 352 690 257 (1.35billion) per year, and 15.9% (€214 963 703) was associated with treatment of diabetes. Mean yearly costs per patient were €6978, with diabetes care costs of €1109. Mean hospital costs of patients exceeded that of the Dutch population three- to sixfold. Total hospital costs increased with age, whereas diabetes expenditure decreased with age (18-40 years, €1575; >70 years, €932). Of all patients with diabetes, 51.3% (n = 99 457) received care related to cardiovascular complications. Micro- and macrovascular complications, or a combination, increased hospital costs (1.4-5.3 times higher). The hospital resource use of Dutch diabetes patients is high, with a large burden of cardiovascular complications. Resource use is rooted mainly in hospital care of diabetes-related complications, not in the treatment of diabetes. Early treatment and prevention of complications remain imperative to taper future healthcare expenditure on patients with diabetes.

The Prevalence of Bowel and Bladder Function During Early Childhood: A Population-Based Study.

Our primary aim was to determine bowel and bladder function in children aged 1 month to 7 years in the general Dutch population. Second, we aimed to identify demographic factors associated with the presence of bowel and bladder dysfunction, and their coexistence. For this cross-sectional, population-based study, parents/caregivers of children aged from 1 month to 7 years were asked to complete the Early Pediatric Groningen Defecation and Fecal Continence questionnaire. Different parameters of bowel and bladder function were assessed using validated scoring systems such as the Rome IV criteria. The mean age of the study population (N = 791) was 3.9 ± 2.2 years. The mean age at which parents/caregivers considered their child fully toilet-trained was 5.1 ± 1.5 years. Prevalence of fecal incontinence among toilet-trained children was 12%. Overall prevalence of constipation was 14%, with a constant probability and severity at all ages. We found significant associations between fecal incontinence and constipation [odds ratio (OR) = 3.88, 95% CI: 2.06-7.30], fecal incontinence and urinary incontinence (OR = 5.26, 95% CI: 2.78-9.98), and constipation and urinary incontinence (OR = 2.06, 95% CI: 1.24-3.42). Even though most children are fully toilet-trained at 5 years, fecal incontinence is common. Constipation appears to be common in infants, toddlers, and older children. Fecal incontinence and constipation frequently coexist and are often accompanied by urinary incontinence. Increased awareness of bowel and bladder dysfunction in infants, toddlers, and young children is required to prevent these problems from continuing at older ages.

Magnitude and relevance of change in health-related quality of life in patients with vascular malformations treated with sirolimus.

Vascular malformations are rare congenital anomalies of the vascular system, which can involve the capillaries, veins, arteries, lymphatics, or a combination of vessel types. Patients with vascular malformations experience an impaired health-related quality of life (HRQoL) because of their symptoms (e.g., pain, swelling, and bleeding) and psychosocial distress. Sirolimus is an effective drug used in the medical treatment of these patients; however, relatively little is known about the effect of sirolimus on specific changes in the HRQoL domains and its magnitude. The magnitude of change (effect size) following intervention is more informative to clinical practitioners than statistically significant but clinically unimportant changes; therefore, this study aimed to examine the magnitude and meaningfulness of change in the HRQoL of children and adults with vascular malformations following sirolimus treatment using low target levels. In total, 50 patients with vascular malformations (19 children, 31 adults) were included in this study. These patients experienced a lower HRQoL than the general population, with the adults reporting a significantly lower score in almost all domains. A 6-month sirolimus treatment improved the HRQoL in 29 patients, including 77.8% of the children (Pediatric Quality of Life Inventory score [PedsQL]) and 57.7% of the adults (Short Form 36 [SF-36]). The effect sizes of sirolimus for each SF-36/PedsQL domain ranged from 0.19 to 1.02. The clinically relevant moderate magnitude of changes was seen in the domains of the children's reports: "Physical functioning" and "Social functioning" and in the domains of the parent reports: "Social functioning," "School functioning," and "Psychosocial." A high-magnitude change was seen in the domains "Emotional functioning" and "Psychosocial" in the children's reports and "Physical functioning" in the parent reports. In addition, the moderate magnitude of changes was also seen in the adults SF-36: in all domains except for "Role limitations-physical problems," "Role limitations-emotional problems," and "General health perception." We believe this is the first study showing the magnitude of change in HRQoL after sirolimus treatment in patients with vascular malformations. Before treatment, these patients experienced an impaired HRQoL compared with the general Dutch population. A 6-month sirolimus treatment with low target levels led to moderate-to-high clinically relevant changes in multiple domains, which significantly improved the HRQoL. https://clinicaltrials.gov/ct2/show/NCT03987152?cond=Vascular+Malformations&cntry=NL&city=Nijmegen&draw=2&rank=1, identifier: NCT03987152.

Understanding Health-Related Quality of Life in Kidney Transplant Recipients: The Role of Symptom Experience and Illness Perceptions.

The purpose of our article is to investigate the impact of symptom experience on health related quality of life (HRQOL) in kidney transplant recipients (KTRs) and whether illness perceptions mediated this impact. Symptom experience, illness perceptions, and HRQOL were measured at transplantation and 6weeks after transplantation in KTRs in an ongoing Dutch cohort study. Multivariable linear regression models were used for the analysis. 90 KTRs were analyzed. Fatigue and lack of energy were the most prevalent and burdensome symptoms at transplantation. Mental HRQOL at 6weeks after transplantation was comparable to that of the general Dutch population (mean [standard deviation, SD]: 49.9 [10.7]) versus 50.2 [9.2]), while physical HRQOL was significantly lower (38.9 [9.1] versus 50.6 [9.2]). Experiencing more symptoms was associated with lower physical and mental HRQOL, and the corresponding HRQOL reduced by -0.15 (95%CI, -0.31; 0.02) and -0.23 (95%CI, -0.42; -0.04) with each additional symptom. The identified mediation effect suggests that worse symptom experiences could cause more unhelpful illness perceptions and consequently lead to lower HRQOL. Illness perceptions may explain the negative impact of symptom experience on HRQOL. Future studies at later stages after kidney transplantation are needed to further explore the mediation effect of illness perceptions and guide clinical practice to improve HRQOL.

Updated normative data for the EORTC QLQ-C30 in the general Dutch population by age and sex: a cross-sectional panel research study

PurposeThe European Organisation for Research and Treatment of Cancer (EORTC) quality of life core questionnaire (QLQ-C30) is a validated and widely-used Patient-Reported Outcome Measure for measuring the health-related quality of life (HRQoL) of cancer patients. To facilitate interpretation of results obtained in studies using the EORTC QLQ-C30, we generated normative data for the Dutch general population, stratified by age and sex.MethodsDutch participants were selected from a larger cross-sectional online panel research study collecting EORTC QLQ-C30 general population normative data across 15 countries. EORTC QLQ-C30 raw scores based on a 4-point response scale were transformed to linear scores ranging from 0 to 100. Transformed scores were weighted based on the United Nations population distribution statistics and presented by age and sex/age. Differences in scale scores of ≥ 10 points in HRQoL were applied to indicate clinical relevance.ResultsOne thousand respondents completed the online survey. Stratified by age, clinically meaningful differences were observed, with worse physical functioning scores and better emotional functioning scores with increased age. Symptom scores remained stable across age groups, except for small age differences observed for fatigue, nausea/vomiting, diarrhoea, and financial difficulties. Stratified by sex/age, men generally scored better for both functioning and symptoms. However, these differences were not clinically meaningful.ConclusionsThese updated normative EORTC QLQ-C30 for the Dutch general population can be used to better interpret HRQoL data obtained from Dutch cancer patients. Being part of a larger international study, these data can further be used for inter-country comparisons in multi-national studies.

Putative transmission of extended-spectrum β-lactamase-producing Escherichia coli among men who have sex with men in Amsterdam, the Netherlands

ObjectivesA previous study showed higher prevalence of Escherichia coli (E. coli) expressing extended-spectrum β-lactamases (ESBL-Ec) among men who have sex with men (MSM) in Amsterdam, the Netherlands, compared with the general Dutch population. This study genetically characterised the ESBL-Ec isolates and investigated whether the increased prevalence could be explained by transmission between participants. MethodsWhole-genome sequences were obtained from 93 unique ESBL-Ec isolates that were cultured from rectal swabs of 79 participants. Isolates were typed according to the Achtman MLST scheme and ESBL and virulence genes were identified. Pairwise SNP distances were determined between isolates. Isolate pairs with ≤ 25 SNPs were considered part of a putative transmission event, and events between multiple participants formed putative transmission clusters. To investigate whether putatively transmitted isolates belonged to globally expanded lineages, the level of hierarchical clustering with international isolates was assessed using core genome MLST (cgMLST) implemented on the Enterobase platform. ResultsThe most frequently detected E. coli types were ST131:blaCTX-M-15 (16 of 117, 13.5%), ST131:blaCTX-M-27, ST3075:blaCTX-M-15 and ST14:blaSHV-12 (all six of 117, 6.5%). Fourteen putative transmission events were identified, forming four putative transmission clusters. The largest putative transmission cluster contained ST131 isolates, which clustered with multiple international isolates in SNP and cgMLST analysis. One other transmission cluster (ST14:blaSHV-12) and two transmission events (ST14:blaSHV-12 and ST394:blaCTX-M-15) contained very rarely reported strains. ConclusionsThe identification of unique ESBL-Ec strains involved in putative transmission and carried by multiple participants demonstrated a high probability of ESBL-Ec transmission between MSM in Amsterdam; therefore, ESBL-Ec infection should be considered in cases of sexually active MSM having associated symptoms.

5606726 IMPACT OF ALLOGENEIC STEM CELL TRANSPLANTATION ON PHYSICAL, MENTAL, AND SOCIAL HEALTH OF ADULT SICKLE CELL DISEASE PATIENTS: A MIXED-METHODS STUDY

Background: Sickle cell disease (SCD) is characterized by chronic hemolytic anemia and recurrent painful vaso-occlusive crises, resulting in considerable physical and psychosocial disease burden and early mortality. In recent years, the application of allogeneic hematopoietic stem cell transplantation (HSCT) as a curative treatment for adult SCD patients has increased. As a result, a deeper understanding of the complex relationship between physical, mental, and social health before and after curation is needed. Aim: To explore the experiences and perspectives of adult SCD patients on the impact of HSCT on their physical, mental, and social health. Methods: A mixed methods study design, consisting of a semi-structured interview and completion of 9 Patient Reported Outcomes Measurement Information System (PROMIS®) item banks per participant was used. Adult SCD patients who underwent HSCT ≥ 1 year ago at the Amsterdam University Medical Center were eligible to take part in this study. Interviews were recorded, transcribed verbatim, and thematically analyzed using MAXQDA® software. Standardized T-scores of PROMIS® measures were evaluated and compared to reference scores of the Dutch general population. Results: Ten SCD patients with a median age of 29,5 years (range 19-49) were included in the study and interviewed between October 2021 and May 2022. Median time since HSCT was 2.7 years (range 1 - 3.5). All patients had successful engraftment. Relevant themes were (1) pain/living pain free, (2) physical wellbeing, (3) mental wellbeing, (4) perspective/outlook, (5) education and work, (6) family and friends and (7) activities and participation. Living pain free and the emergence of a future perspective were major improvements for most participants which resonated strongly in their daily lives. Nevertheless, emotional struggles with processing the impact of having had SCD on the one hand, while adjusting to the novel circumstances on the other hand, were common among participants. Before and after HSCT, participants experienced a lack of psychological help. Two patients with ongoing pain from avascular bone necrosis had mixed feelings about the success of the transplant. These two patients scored within the mild, moderate, or severe symptom category on ≥ 7 of 9 PROMIS® item banks. While mean PROMIS® T-scores of all participants fell within the reference values of the general population (Figure 1), a large variation between patients was observed which matched with our findings from the qualitative data. Conclusions: Adult SCD patients experience significant improvements in many aspects of their physical, mental, and social health after cure by HSCT. Yet, they are confronted with a new and often unfamiliar reality, which carries different challenges. Pain as a result of irreversible complications of SCD continues to have a negative impact on quality of life after HSCT. Clinicians should acknowledge these challenges and aim at creating realistic expectations in future transplant candidates. Moreover, patients expressed a need for tailored psychological care, which should be offered before and after HSCT.

Exploring the Influence of Work Integration Social Enterprises on Consumers through Differentiated Customer Value Proposition

In the endeavour towards an inclusive society, work integration social enterprises (WISEs) play an important role in workplaces and labour market. Customers of WISEs are an underexplored field, and thus, this study looked at the influence of WISEs on customers using the concept of customer value. It deployed qualitative and quantitative study of two cases of WISEs in the Dutch agriculture and food industry. Market basket analysis was conducted to find interactions between customer characteristics and customer values. The results of our study show that taste as a functional value is a minimum requirement as well as a unique selling proposition for these two cases. The fact that they are a WISE was presented at different explicitness levels to customers: sometimes with a direct statement, other times with a phrase or visual hinting at this social aspect. Customers not always received this message or misinterpreted it as the WISEs intended. The results also indicate that products from these two cases are not associated with lower quality despite findings by earlier studies on socially oriented organisations. However, it is yet to be explored how the general Dutch population perceives the products and services of WISEs.

Children Newly Diagnosed with Fetal and Neonatal Alloimmune Thrombocytopenia: Neurodevelopmental Outcome at School Age

To evaluate the neurodevelopmental outcome at school age in children newly diagnosed with fetal neonatal alloimmune thrombocytopenia (FNAIT). This observational cohort study included children diagnosed with FNAIT between 2002 and 2014. Children were invited for cognitive and neurological testing. Behavioral questionnaires and school performance results were obtained. A composite outcome of neurodevelopmental impairment (NDI) was used, defined and subdivided into mild-to- moderate and severe NDI. Primary outcome was severe NDI, defined as IQ < 70, cerebral palsy with Gross Motor Functioning Classification Scale (GMFCS) level ≥ III, or severe visual/hearing impairment. Mild-to-moderate NDI was defined as IQ 70-85, minor neurological dysfunction or cerebral palsy GMFCS level ≤ II or mild visual/hearing impairment. In total, 44 children were included at a median age of 12 years (range 6-17 years). Neuroimaging at diagnosis was available in 82% (36/44) of children. High-grade intracranial hemorrhage (ICH) was detected in 14% (5/36). Severe NDI was detected in 7% (3/44); two children had high-grade ICH and one low-grade ICH and perinatal asphyxia. Mild-to- moderate NDI was detected in 25% (11/44); one child had high-grade ICH and eight were without ICH, yet for two children neuroimaging was not performed. Adverse outcome (perinatal death or NDI) was 39% (19/49). Four children (9%) attended special needs education, three of whom had severe NDI and one with mild-to-moderate NDI. Total behavioral problems within the clinical range were reported in 12%, which is comparable with 10% in the general Dutch population. Children who are newly diagnosed with FNAIT are at increased risk for long- term neurodevelopmental problems, even those without ICH.

Dimensionality and Validation of the Highly Sensitive Person Scale (HSPS) in a Dutch General Population Sample and Two Clinical Samples

Abstract: Previous studies on the Highly Sensitive Person Scale (HSPS) were primarily conducted in highly selective, mostly student populations. The objective of the present study was to examine the factor structure of the Dutch HSPS in the general population ( n = 998), prolonged fatigue ( n = 340), and chronic pain samples ( n = 283), and investigate its psychometric properties. The factorial structure of the HSPS was assessed by an exploratory factor analysis, followed by a confirmatory factor analysis. To this end, the overall sample consisting of 1,621 subjects was randomly split into two subsamples. The factor structure was subsequently confirmed in the general population, fatigue, and chronic pain samples separately. A bi-factor model, consisting of a general factor and three separate factors, provided the best fit to the data in each sample. The three separate factors, capturing different dimensions of sensory processing sensitivity, were labeled “Ease of Excitation” (11 items), “Sensory and Aesthetic Sensitivity” (5 items), and “Low Sensory Threshold” (5 items). Internal consistency was satisfactory. Distinct patterns of associations were found between these factors and (un)related personality constructs.

Elective Ascending Aortic Aneurysm Surgery in the Elderly

No clear guidelines exist for performing preventive surgery for ascending aortic (AA) aneurysm in elderly patients. This study aims to provide insights by: (1) evaluating patient and procedural characteristics and (2) comparing early outcomes and long-term mortality after surgery between elderly and non-elderly patients. A multicenter retrospective observational cohort-study was performed. Data was collected on patients who underwent elective AA surgery in three institutions (2006-2017). Clinical presentation, outcomes, and mortality were compared between elderly (≥70 years) and non-elderly patients. In total, 724 non-elderly and 231 elderly patients were operated upon. Elderly patients had larger aortic diameters (57.0 mm (IQR 53-63) vs. 53.0 mm (IQR 49-58), p < 0.001) and more cardiovascular risk factors at the time of surgery than non-elderly patients. Elderly females had significantly larger aortic diameters than elderly males (59.5 mm (55-65) vs. 56.0 mm (51-60), p < 0.001). Short-term mortality was comparable between elderly and non-elderly patients (3.0% vs. 1.5%, p = 0.16). Five-year survival was 93.9% in non-elderly patients and 81.4% in elderly patients (p < 0.001), which are both lower than that of the age-matched general Dutch population. This study showed that in elderly patients, a higher threshold exists to undergo surgery, especially in elderly females. Despite these differences, short-term outcomes were comparable between 'relatively healthy' elderly and non-elderly patients.

Health-related quality of life in patients with primary sclerosing cholangitis: A longitudinal population-based cohort study.

Data regarding health-related quality of life (HRQoL) in primary sclerosing cholangitis (PSC) are sparse and have only been studied cross-sectionally in a disease which runs a fluctuating and unpredictable course. We aim to describe HRQoL longitudinally by using repeated measurements in a population-based cohort. Every 3 months from May 2017 up to August 2020, patients received digital questionnaires at home. These included the EQ-5D, 5-D Itch, patient-based SCCAI and patient-based HBI. The SF-36, measuring HRQoL over eight dimensions as well as a physical component summary (PCS) and mental component summary (MCS) score, was sent annually. Data were compared with Dutch reference data and a matched IBD disease control from the population-based POBASIC cohort. Mixed-effects modelling was performed to identify factors associated with HRQoL. Three hundred twenty-eight patients completed 2576 questionnaires. A significant reduction of small clinical relevance in several mean HRQoL scores was found compared with the Dutch reference population: 46.4 versus 48.0, p=.018 for PCS and 47.5 versus 50.5, p=.004 for MCS scores. HRQoL outcomes were significantly negatively associated with coexisting active IBD (PCS -12.2, p < .001 and MCS -12.0, p < .001), which was not the case in case of quiescent IBD. Decreasing HRQoL scores were also negatively associated with increasing age (PCS -0.1 per 10 years, p=.002), female sex (PCS -2.8, p < .001), diagnosis of AIH overlap (PCS -3.7, p=.059), end-stage liver disease (PCS -3.7, p=.015) and presence of itch (PCS -9.2, p < .001 and MCS -3.1, p=.078). The odds of reporting a clinically relevant reduction in EQ-5D scores showed seasonal variation, being lowest in summer (OR=0.48 relative to spring, p=.037). In patients with liver transplant, HRQoL outcomes were comparable to the Dutch general population. PSC patients report impaired HRQoL of small clinical relevance compared with the general population. After liver transplantation, HRQoL scores are at comparable levels to the general population. HRQoL scores are associated with potentially modifiable factors such as itch and IBD activity.

Recreational Drug Use and Distress From Hallucinations in the General Dutch Population.

Distress associated with auditory (AH) and visual (VH) hallucinations in the general population was found to be predictive of later need for mental healthcare. It is, therefore, important to understand factors relating to the distress individuals experience from their hallucinations. Hallucinations can easily occur under substance-induced states, but recreational drug use is also known as a self-medication strategy. The current study, therefore, investigated whether recreational drug use by individuals from the general population is associated with the degree of distress experienced from AH and/or VH. Drug use and distress severity associated with AH (N = 3.041) and/or VH (N = 2.218) were assessed by means of an online survey in the general Dutch population (>14 years of age). Multiple linear regression revealed that while past month consumption of alcohol was associated with less AH- and VH-related distress, past month cannabis use was associated with more AH- and VH-related distress. Furthermore, past month use of nitrous oxide was associated with more severe VH-related distress. Recreational use of alcohol, cannabis, and nitrous oxide may play important differential roles in the degree of distress associated with AH and VH in individuals from the general population. The consumption of these substances could form a potential risk factor for the development of distressing hallucinations or function as a signal marker for their occurrence. Due to the cross-sectional design of the current study, the causal relation between recreational drug use and distressing hallucinations remains to be elucidated.

From Genetics to Clinical Implications: A Study of 675 Dutch Osteogenesis Imperfecta Patients.

Osteogenesis imperfecta (OI) is a heritable connective tissue disorder that causes bone fragility due to pathogenic variants in genes responsible for the synthesis of type I collagen. Efforts to classify the high clinical variability in OI led to the Sillence classification. However, this classification only partially takes into account extraskeletal manifestations and the high genetic variability. Little is known about the relation between genetic variants and phenotype as of yet. The aim of the study was to create a clinically relevant genetic stratification of a cohort of 675 Dutch OI patients based on their pathogenic variant types and to provide an overview of their respective medical care demands. The clinical records of 675 OI patients were extracted from the Amsterdam UMC Genome Database and matched with the records from Statistics Netherlands (CBS). The patients were categorized based on their harbored pathogenic variant. The information on hospital admissions, outpatient clinic visits, medication, and diagnosis-treatment combinations (DTCs) was compared between the variant groups. OI patients in the Netherlands appear to have a higher number of DTCs, outpatient clinic visits, and hospital admissions when compared to the general Dutch population. Furthermore, medication usage seems higher in the OI cohort in comparison to the general population. The patients with a COL1A1 or COL1A2 dominant negative missense non-glycine substitution appear to have a lower health care need compared to the other groups, and even lower than patients with COL1A1 or COL1A2 haploinsufficiency. It would be useful to include the variant type in addition to the Sillence classification when categorizing a patient's phenotype.

Differences in Quality of Life between German and Dutch Patients with Prostate Cancer Treated with Robot-assisted Radical Prostatectomy: Implications for International Multicenter Randomized Controlled Trials

BackgroundAs a local treatment for prostate cancer (PCa), robot-assisted radical prostatectomy (RARP) may have a quality of life (QoL) benefit over open surgery. Recent analyses revealed substantial between-country differences in the function and symptom scale scores for the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30), which is typically used to assess patient-reported QoL. Such differences could have implications for multinational studies in PCa. ObjectiveTo examine whether nationality is significantly associated with patient-reported QoL. Design, setting, and participantsThe study cohort comprised Dutch and German patients with PCa treated with RARP in a single high-volume prostate center from 2006 to 2018. Analyses were restricted to patients who were preoperatively continent with at least one follow-up time point. Outcome measurements and statistical analysisQoL was measured in terms of the global Quality of Life (QL) scale score and the overall summary score for the EORTC QLQ-C30. Linear mixed models for repeated-measures multivariable analyses (MVAs) were used to examine the association between nationality and both the global QL score and the summary score. MVAs were further adjusted for QLQ-C30 baseline values, age, Charlson comorbidity index, preoperative prostate-specific antigen, surgical expertise, pathological tumor and nodal stage, Gleason grade, degree of nerve-sparing, surgical margin status, 30-d Clavien-Dindo grade complications, urinary continence recovery, and biochemical recurrence/postoperative radiotherapy. Results and limitationsFor Dutch (n = 1938) versus German (n = 6410) men, the mean baseline scores were 82.8 versus 71.9 for the global QL scale score and 93.4 versus 89.7 for the QLQ-C30 summary score. Urinary continence recovery (QL: +8.9, 95% confidence interval [CI] 8.1–9.8; p < 0001) and Dutch nationality (QL: +6.9, 95% CI 6.1–7.6; p < 0001) were the strongest positive contributors to the global QL and summary scores, respectively. The main limitation is the retrospective study design. In addition, our Dutch cohort may not be representative of the general Dutch population and reporting bias cannot be ruled out. ConclusionsOur findings provide observational evidence under specific conditions involving the same setting for patients of two different nationalities suggesting that cross-national patient-reported QoL differences appear to be real and may need to be taken into consideration in multinational studies. Patient summaryWe observed differences in the quality-of-life scores reported by Dutch and German patients with prostate cancer after they underwent robot-assisted removal of the prostate. These findings should be taken into consideration in cross-national studies.