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Introduction: Estimates of the prevalence of depression in people with intellectual disability range from almost nonexistent to 39%. We analyzed the outcomes of three screening instruments to find out more about the prevalence in people with mild or borderline disability. Methods: 102 Dutch individuals residing in institutions or living independently took part. The Beck Depression Inventory, the Glasgow Depression Scale and the Signaallijst Depressie voor Zwakzinnigen were used. Results: Using the standard cutoff values, the numbers of people identified as depressed by the tests were 31%, 44%, and 22%, respectively. These were high numbers, and they did not refer to the same cases. When scoring above cutoff on all three tests simultaneously was the criterion, 13.7% of the participants were identified as depressed. Conclusion: The combined use of several measuring instruments taught us that depression in people with intellectual disabilities might occur more frequently than often assumed: 13.7% might be the lower limit of its actual prevalence. People in this group still run the risk of being underdiagnosed.

Objective: The present study tested the hypothesis that improvements in parental sense of competence during multisystemic therapy (MST) lead to positive changes in parenting, which in turn lead to a decrease of adolescent externalizing problems. Mediational models were tested separately for 3 dimensions of parenting (positive discipline, inept discipline, and relationship quality) that are targeted in MST. Each model included "3-path mediation," in which 2 mediators (i.e., changes in parental sense of competence and parenting dimension) intervene sequentially between the independent (i.e., intervention status) and dependent variable (i.e., change in externalizing problems). Method: Participants in this randomized controlled trial were 256 adolescents and their families who received either MST (n = 147) or treatment as usual (n = 109). In addition to pre- and postintervention assessments, 5 monthly within-intervention assessments took place. Results: Both preintervention-postintervention comparison, through analysis of covariance, and comparison of trajectories during intervention, through latent growth modeling, showed that MST enhanced growth in parental sense of competence and positive discipline, led to no deterioration in relationship quality, and resulted in a decrease in adolescent externalizing problems. The results supported a sequential pattern of change for positive discipline: Changes in parental sense of competence predicted changes in positive discipline, which in turn predicted decrease in adolescent externalizing problems. No support was found for mediated effects of inept discipline and relationship quality. Conclusions: The results affirm the importance of directly targeting parental sense of competence and positive discipline in future interventions aimed at decreasing adolescent problem behavior. (Contains 4 figures, 2 tables, and 1 footnote.)

Abstract: Families at high risk for Lynch syndrome can effectively be recognised by microsatellite instability (MSI) testing. The aim of the present study is to compare the effectiveness of a MSI test for the identification of Lynch syndrome in patients selected by a pathologist mainly based on young age at diagnosis (MSI-testing-indicated-by-a-Pathologist; MIPA), with that of patients selected by a clinical geneticist mainly based on family history (MSI-testing-indicated-by-Family-History; MIFH). Patients with a Lynch syndrome associated tumour were selected using MIPA (n =362) or MIFH (n =887). Germline DNA mutation testing was performed in 171 out of 215 patients (80%) with a MSI positive tumour. MSI was tested positive in 20% of the MIPA-group group compared to 16% in the MIFH-group (P = 0.291). In 91 of 171 patients with MSI positive tumours tested for germline mutations were identified as Lynch syndrome patients: 42% in the MIPA-group and 56% in the MIFH-group (P =0.066). Colorectal cancer (CRC) or endometrial cancer (EC) presenting at an age below 50years would have led to the diagnosis of Lynch syndrome in 89% of these families (CRC below 50years: 88% and EC below 50years: 12%). Families detected by MIPA were characterised more often by extracolonic Lynch syndrome associated malignancies, especially EC (P <0.001). Our results indicate that recognition of Lynch syndrome by CRC or EC below 50years is as effective as a positive family history. Families from patients selected by individual criteria more often harbour extracolonic Lynch syndrome associated malignancies. [Copyright &y& Elsevier]

This article discusses the relationship between the behavior of Research and Development management, and corporate culture and general socialization processes. It shows that, on the one hand, managerial attitudes are the product of corporate culture and socialization processes and, on the other, that management significantly contributes to their legitimation. This aspect of management behavior raises some questions. The analysis of these attitudes reveals that at least to a degree they have an economically debilitating effect. It is argued in this article that Research and Development management attitudes are a block on the road to solve a well-known management problem, namely of finding an equilibrium between stimulating individual creativity and organizing effective cooperation. In support of this proposition the results of a case study are presented in which the decision-making process about production technology at the Center for Manufacturing Technology is analyzed. The CMT is a Research and Development department of Philips Electronics Corporation in The Netherlands. First, the article elaborates the major elements of the Philips corporate culture, and the characteristics of the ruling educational paradigm at Dutch Technical Universities. With regard to the Philips culture the following factors are dealt with: the historical background of the Research and Development department and the related ambiguity of its position, the autonomy of the researcher, the industrial background of the R&D manager, the impact of personal commitment for successful research, skepticism about the quality of the intermediate goods supplied by the company, and disciplinary chauvinism. In addition attention is given to the ‘frame of existing solutions’ (Sinclair), the close relationship between university and industry and the emphasis on ‘personal achievement’ which are characteristic of the mainstream educational paradigm at Dutch technical universities. Second, the management behavior of the Philips Center for Manufacturing Technology department is described from the point of view of corporate culture to illustrate how the attitudes of CMT management contribute to the corporate culture in the enterprise and to the dominating technological paradigm, and how these attitudes detract from successful Research and Development activities. [ABSTRACT FROM AUTHOR]

Background: Patient records, imaging, and residual biomaterial from clinical procedures are crucial resources for medical research. In the Netherlands, consent for secondary research has historically relied on opt-out consent. For ethical-legal experts who purport passive consent undermines patient autonomy, opt-in consent (wherein affirmative action is required) is seen as the preferred standard. To date, there is little empirical research exploring patient feasibility, organizational consequences, and the potential risks for research based on secondary data. Thus, we applied the RE-AIM framework to evaluate the impact of migrating from an opt-out to an opt-in consent process., Methods: This evaluation was carried out in Radboud University Medical Center, a large tertiary hospital located in the southeast of the Netherlands. All non-acute, mentally competent patients ≥16 years of age registered between January 13, 2020 and June 30, 2023 were targeted (N = 101,437). In line with the RE-AIM framework, individual and organizational consequences were evaluated across five domains: reach, efficacy, adoption, implementation, and maintenance., Results: 101,437 eligible patients were approached of whom 66,214 (65.3%) consented, 8,059 (7.9%) refused consent and 27,164 (26.8%) had no response. Of the 74,273 patients with a response, 89.1% consented to secondary use. The migration to an opt-in consent system was modestly successful; yet notably, differential response patterns by key sociodemographic characteristics were observed. Adaptions to the process flow improved its effectiveness and resulted in a reasonable response over time. Implementation was most affected by budgetary restraints, thus impeding the iterative approach which could have further improved domain outcomes., Conclusion: This evaluation provides an overview of logistical and pragmatic issues encountered when migrating from opt-out to opt-in consent. Response bias remains a major concern. Though not always directly transferable, these lessons can be broadly used to inform other health care organizations of the potential advantages and pitfalls of an opt-in consent system., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Lutomski, Manders. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Biobanks and their collections are considered essential for contemporary biomedical research and a critical resource toward personalized medicine. However, they need to operate in a sustainable manner to prevent research waste and maximize impact. Sustainability is the capacity of a biobank to remain operative, effective, and competitive over its expected lifetime. This remains a challenge given a biobank's position at the interplay of ethical, societal, scientific, and commercial values and the difficulties in finding continuous funding. In the end, biobanks are responsible for their own sustainability. Still, biobanks also depend on their surrounding environment, which contains overarching legislative, policy, financial, and other factors that can either impede or promote sustainability. The Biobanking and Biomolecular Research Infrastructure for The Netherlands (BBMRI.nl) has worked on improving the national environment for sustainable biobanking. In this article, we present the final outcomes of this BBMRI.nl project. First, we summarize the current overarching challenges of the Dutch biobanking landscape. These challenges were gathered during workshops and focus groups with Dutch biobanks and their users, for which the full results are described in separate reports. The main overarching challenges relate to sample and data quality, funding, use and reuse, findability and accessibility, and the general image of biobanks. Second, we propose a package of recommendations-across nine themes-toward creating overarching conditions that stimulate and enable sustainable biobanking. These recommendations serve as a guideline for the Dutch biobanking community and their stakeholders to jointly work toward practical implementation and a better biobanking environment. There are undoubtedly parallels between the Dutch situation and the challenges found in other countries. We hope that sharing our project's approach, outcomes, and recommendations will support other countries in their efforts toward sustainable biobanking.

We evaluated with long-term follow-up, the prognostic value of the mitotic activity index (MAI) and the volume corrected mitotic index (M/V-index) compared with that of the histological grade in breast cancer patients not treated with adjuvant systemic therapy. Of 739 consecutive patients living in the city of Nijmegen, the Netherlands, 477 patients with primary unilateral breast cancer were not treated with adjuvant systemic therapy and eligible for the study. In multivariate survival analyses the MAI and M/V-index showed similar hazard ratios (HRs) compared to HRs of histological grade for overall survival (OS) (HR: 1.45, 1.48, and grade II versus grade I (GII/GI) 1.34, grade III versus grade I (GIII/GI) 1.53, respectively) and for breast cancer specific survival (BCSS) (HR: 1.27, 1.57, and (GII/GI) 1.57 (GIII/GI) 2.32, respectively). Other independent prognostic variables for OS and BCSS were age at diagnosis, tumour size, and number of positive lymph nodes. In the present study with long term follow-up, we compared the prognostic value of mitotic activity with that of histological grade and found no advantage for the mitotic activity in predicting either BCSS or OS and concluded that histological grade and the mitotic activity were equally informative in predicting patient outcome. As histological grade is a well established and widely used prognosticator we do not have arguments to replace the histological grade by the mitotic indices MAI or M/V-index.

We assessed reliability of self-reported diagnostic radiation history in BRCA1/2 mutation carriers with and without breast cancer. Within the frame-work of the HEBON study, 401 BRCA1/2 mutation carriers completed a baseline (1999-2004) and a follow-up questionnaire (2006-2007). Test-retest reliability of self-reported exposure to chest X-rays, fluoroscopies and mammograms was assessed for the entire study population and by case status.Overall proportion agreement on reporting ever/never exposure was good ([75%), while the corresponding kappa coefficients were between 0.40 and 0.75, indicating at least moderate reliability beyond chance. Reliability of number of exposures was also good ([75%). Proportion agreement on reporting age at first mammogram was low(40%) for exact consistency and moderate (60%) for consistency +/- 1 year. Reliability of age at first mammogram was higher for cases than for unaffected carriers(P\0.001) but this difference disappeared when excluding diagnostic mammograms (P = 0.60). In unaffected carriers proportion agreement on age at last mammogram was 50%. In general, the direction of disagreement on all items was equally distributed. More consistent reporting was mainly determined by a younger age at questionnaire completion. In conclusion, inconsistent self-report of diagnostic radiation by BRCA1/2 mutation carriers was mainly non-differential by disease status.

Introduction: Due to high cancer risks, women carrying a BRCA 1/2 mutation face a complex choice between breast and ovarian cancer surveillance and prophylactic surgery. The aim of this study is to evaluate educational-support groups, which are offered to facilitate mutual support between BRCA mutation carriers and to provide adequate information., Methods: Female BRCA mutation carriers were approached by a social worker after genetic test disclosure and offered participation in educational-support groups. Data regarding emotional well-being, breast cancer risk knowledge and perception, cancer risk management behaviour and family communication were collected both before (T1) and after group participation (T2)., Results: Of the 34 participants, mean levels of negative mood states at T1 were significantly higher compared to those of a norm group (depression p < 0.001, anger p < 0.001, fatigue p = 0.04, tension p = 0.03) and remained high at T2. Self-perceived breast cancer risk and frequency of cancer thoughts were high both at T1 and T2. Breast cancer risk knowledge was accurate both at T1 and T2; women either followed current surveillance advices or obtained prophylactic surgery. Communication with the family of origin was significantly reduced at T2 compared to T1 (p = 0.02). At T2, all women indicated that group participation highly met their needs of BRCA-related information to support their decision-making processes regarding cancer surveillance or prophylactic surgery., Conclusion: After following an educational support group female BRCA mutation carriers were able to make cancer risk management decisions but still reported high levels of emotional distress while family communication appeared diminished.

Purpose: The tumor mRNA expression levels of mammaglobin, a novel breast-specific and breast cancer-associated marker, were correlated with disease outcome in 280 patients with primary breast cancer., Patients and Methods: Mammaglobin expression levels were assessed by quantitative reverse transcriptase polymerase chain reaction in frozen tumor tissue from breast cancer patients with a median age of 60 years (range, 30 to 88 years) and a median follow-up of 85 months (range, 2 to 169 months)., Results: High expression levels were associated with low-grade tumors (P =.018), with positive estrogen and progesterone receptor status (P <.001), and postmenopausal status (P =.010). In the analysis of all patients, low tumor mammaglobin expression levels predicted an early relapse both in Cox univariate (hazard ratio [HR], 0.52; 95% CI, 0.34 to 0.79; P =.002) and multivariate regression analyses corrected for the traditional prognostic factors (HR, 0.55; 95% CI, 0.35 to 0.88; P =.012). The association of mammaglobin expression with the rate of relapse was particularly favorable in patients who received adjuvant tamoxifen treatment (HR, 0.35; 95% CI, 0.17 to 0.71; P =.004)., Conclusion: These results demonstrate that the assessment of the tumor mRNA expression level of the breast-specific protein mammaglobin could be useful to stratify patients for individual adjuvant treatment strategies.

Background: At the St Gallen meeting of 2001 it was agreed to select high-risk patients for adjuvant systemic therapy by lymph node status, tumor size, age, hormone receptor status, and histological grade. In The Netherlands it was chosen to use either the histological grade or the mitotic activity index (MAI). The aim of this study was to retrospectively evaluate the independent prognostic value of the MAI in primary breast cancer patients, who were not treated with adjuvant systemic therapy, on relapse-free survival (RFS) and overall survival (OS)., Patients and Methods: The data of 137 systemically untreated patients with primary breast cancer diagnosed between 1992 and 1996, of whom MAI was assessed, were retrospectively collected. The MAI was correlated to classical prognostic factors and we determined the prognostic value of the MAI, the histological grade and other prognostic factors., Results: The median observation time was 4.2 years. The MAI showed a positive correlation to lymph node status (P < 0.001) and a negative correlation to age (P = 0.005), menopausal status (P < 0.001) and the ER and PgR status (r(s) = -0.390 [ER], r(s) = -0.440 [PgR], both P < 0.001). A high MAI (> or = 15) predicted a reduced RFS and OS in the Kaplan-Meier analysis (P = 0.0070 and P = 0.0017, respectively). Also in the multivariate analysis, the MAI showed to be an independent predictor of poor RFS (P = 0.035), in addition to lymph node status. However, the MAI did not predict for OS, in contrast to tumor size and lymph node status., Conclusion: The present study confirms that the MAI is an independent prognostic factor for RFS, but not for OS and may be useful for daily clinical practice.