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Expanded universal carrier screening (EUCS) entails a twofold expansion of long-standing (preconception) carrier screening programmes: it not only allows the simultaneous screening of a large list of diseases ('expanded'), but also refers to a pan-ethnic screening offer ('universal'). Advocates mention three main moral advantages of EUCS as compared with traditional (targeted and/or ancestry-based) forms of carrier screening: EUCS will (1) maximise opportunities for autonomous reproductive choice by informing prospective parents about a much wider array of reproductive risks; (2) provide equity of access to carrier testing services; (3) reduce the risk of stigmatisation. This empirical ethics study aims to widen this account and provide a balanced picture of the potential pros and cons of EUCS. Semi-structured interviews were conducted with 17 health (policy) professionals and representatives of patient organisations about their views on carrier screening including a possible EUCS scenario. Stakeholders acknowledged the potential benefits of EUCS, but also expressed five main moral concerns: (1) Does EUCS respond to an urgent problem or population need? (2) Is it possible to offer couples both understandable and sufficient information about EUCS? (3) How will societal views on 'reproductive responsibility' change as a result of EUCS? (4) Will EUCS lead to a lower level of care for high-risk populations? (5) Will EUCS reinforce disability-based stigmatisation? While having the potential to overcome some moral limits inherent in traditional carrier screening, EUCS comes with moral challenges of its own. More research is needed to (further) anticipate the ethical and practical consequences of EUCS.

OBJECTIVES The International Classification of Functioning Disability and Health (ICF) Core Sets for Hearing Loss (HL) were developed to serve as a standard for the assessment and reporting of the functioning and health of patients with HL. The aim of the present study was to compare the content of the intake documentation currently used in secondary and tertiary hearing care settings in the Netherlands with the content of the ICF Core Sets for HL. Research questions were (1) to what extent are the ICF Core Sets for HL represented in the Dutch Otology and Audiology intake documentation? (2) are there any extra ICF categories expressed in the intake documentation that are currently not part of the ICF Core Sets for HL, or constructs expressed that are not part of the ICF? DESIGN Multicenter patient record study including 176 adult patients from two secondary, and two tertiary hearing care settings. The intake documentation was selected from anonymized patient records. The content was linked to the appropriate ICF category from the whole ICF classification using established linking rules. The extent to which the ICF Core Sets for HL were represented in the intake documentation was determined by assessing the overlap between the ICF categories in the Core Sets and the list of unique ICF categories extracted from the intake documentation. Any extra constructs that were expressed in the intake documentation but are not part of the Core Sets were described as well, differentiating between ICF categories that are not part of the Core Sets and constructs that are not part of the ICF classification. RESULTS In total, otology and audiology intake documentation represented 24 of the 27 Brief ICF Core Set categories (i.e., 89%), and 60 of the 117 Comprehensive ICF Core Set categories (i.e., 51%). Various ICF Core Sets categories were not represented, including higher mental functions (Body Functions), civic life aspects (Activities and Participation), and support and attitudes of family (Environmental Factors). One extra ICF category emerged from the intake documentation that is currently not included in the Core Sets: sleep functions. Various Personal Factors emerged from the intake documentation that are currently not defined in the ICF classification. CONCLUSIONS The results showed substantial overlap between the ICF Core Sets for HL and the intake documentation of otology and audiology, but also revealed areas of nonoverlap. These findings contribute to the evaluation of the content validity of the Core Sets. The overlap can be viewed as supportive of the Core Sets' content validity. The nonoverlap in Core Sets categories indicates that current Dutch intake procedures may not cover all aspects relevant to patients with ear/hearing problems. The identification of extra constructs suggests that the Core Sets may not include all areas of functioning that are relevant to Dutch Otology and Audiology patients. Consideration of incorporating both aspects into future intake practice deserves attention. Operationalization of the ICF Core Sets categories, including the extra constructs identified in this study, into a practical and integral intake instrument seems an important next step.

Objectives: Women seeking counseling because of familial breast cancer occurrence face difficult decisions, such as whether and when to opt for risk-reducing mastectomy (RRM) in case of BRCA1/2 mutation. Only limited research has been done to identify the psychological factors associated with the decision for RRM. This study investigated which psychological factors are related to the intention to choose for RRM.Materials & methods: A cohort of 486 cancer-unaffected women with a family history of breast cancer completed the following questionnaires prior to genetic counseling: the Cancer Worry Scale, Positive And Negative Affect Scale, Perceived Personal Control Scale, Hospital Anxiety and Depression Scale and State Anxiety Scale and questions regarding socio-demographic characteristics, family history, risk perception and RRM intention. Multivariate logistic regression was used to analyze the relation between psychological factors and women's intention to choose for RRM.Results: Factors associated with RRM intention were high positive affect (OR = 1.86, 95%CI = 1.12-3.08), high negative affect (OR = 2.52, 95%CI = 1.44-4.43), high cancer worry (OR = 1.65, 95%CI = 1.00-2.72), high perceived personal control (OR = 3.58, 95%CI = 2.18-5.89), high risk-perception (OR = 1.85, 95% CI = 1.15-2.95) and having children (OR = 2.06, 95%CI = 1.21-3.50).Conclusion: Negative and positive affects play an important role in the intention for RRM. Furthermore, perceived personal control over the situation is associated with an intention for RRM. In addition to focusing on accurate risk communication, counseling should pay attention to the influence of perceived control and emotions to facilitate decision-making. (C) 2016 Elsevier Ltd. All rights reserved.

In toxicological health risk assessment, epistemic uncertainties (e.g. about a chemical's intrinsic properties or toxicity) often remain, preventing definitive statements about whether a chemical constitues a risk. In this study, we analyzed public appraisals of uncertain risks of food additives and contaminants. We identified three major characteristics of public appraisal. First, hazard appraisals differed consistently from risk appraisals: respondents were less disturbed by a possible health risk than by the mere presence of the chemical substance in food. Second, while a majority understood that exposure determines whether a chemical constitutes a risk, many respondents thought that all chemicals are equally harmful. This suggests a mismatch between beliefs about exposure and beliefs about toxicity. Finally, the higher people valued certainty about food safety and the less they considered uncertainty about a risk acceptable, the more severe they appraised the presence of the chemical substance in food. This suggests that a mismatch between the level of uncertainty that people expect about food safety and the actual level of scientific uncertainty, affects how people evaluate the presence of chemical substances in food. Following the findings, implications for risk communication are discussed.

Introduction: Vitamin D is essential for bone health since it stimulates the intestinal absorption of calcium and phosphorus from the gut, both necessary for bone mineralization. However, vitamin D deficiency is highly prevalent among several non-Western immigrant populations in the Netherlands. To date, there are no data available of the vitamin D status in the Chinese population residing in the Netherlands. Therefore, an observational study was performed to determine 25-hydroxyvitamin D (25(OH)D) concentrations and to assess potential determinants of low vitamin D status. Methods: Subjects, aged 18 years and older, with a Chinese background and residing in the Netherlands were invited to participate in the study. A questionnaire was used to assess general characteristics and lifestyle habits. Fasting blood samples were obtained in March 2014 to measure serum 25(OH)D concentration, and analysed by liquid chromatography tandem mass spectrometry. Results: 418 subjects participated in the study, 104 men and 314 women. The mean age for both men and women was 56 years. Serum 25(OH)D concentration < 50 nmol/L was more prevalent in men than in women (67.9% and 53.1%, respectively; p = 0.008). The percentage of serum 25(OH)D concentration < 25 nmol/L in men and women was 5.8% and 10.9%, respectively. Multiple logistic regression analysis, adjusted for age and gender, revealed that non-use of vitamin D supplements and fewer days per week of physical activity were significant predictors of serum 25(OH)D levels below 50 nmol/L. Conclusions: Within the Chinese population living in the Netherlands, serum 25(OH)D concentration was below 50 nmol/L in 68% of men and 53% of women. Use of vitamin D supplements by Chinese people in the Netherlands was highly protective against low 25(OH)D levels.

Item does not contain fulltext BACKGROUND: In young transgender women previously treated with puberty-suppressing hormones, penoscrotal hypoplasia can make penoscrotal inversion vaginoplasty unfeasible. The aim of this study was to prospectively assess surgical outcomes and follow-up of total laparoscopic sigmoid vaginoplasty as primary reconstruction in a cohort of transgender women with penoscrotal hypoplasia. METHODS: Baseline demographics, surgical characteristics, and intraoperative and postoperative complications of all performed total laparoscopic sigmoid vaginoplasty procedures were prospectively recorded. RESULTS: From November of 2007 to July of 2015, 42 transgender women underwent total laparoscopic sigmoid vaginoplasty as primary vaginal reconstruction. The mean age at the time of surgery was 21.1 +/- 4.7 years. Mean follow-up time was 3.2 +/- 2.1 years. The mean operative duration was 210 +/- 44 minutes. There were no conversions to laparotomy. One rectal perforation was recognized during surgery and immediately oversewn without long-term consequences. The mean length of hospitalization was 5.7 +/- 1.1 days. One patient died as a result of an extended-spectrum beta-lactamase-positive necrotizing fasciitis leading to septic shock, with multiorgan failure. Direct postoperative complications that needed laparoscopic reoperation occurred in three cases (7.1 percent). In seven cases (17.1 percent), long-term complications needed a secondary correction. After 1 year, all patients had a functional neovagina with a mean depth of 16.3 +/- 1.5 cm. CONCLUSIONS: Total laparoscopic sigmoid vaginoplasty seems to have a similar complication rate as other types of elective laparoscopic colorectal surgery. Primary total laparoscopic sigmoid vaginoplasty is a feasible gender-confirming surgical technique with good functional outcomes for transgender women with penoscrotal hypoplasia. CLINICAL QUESTIO/LEVEL OF EVIDENCE: Therapeutic, IV.

Item does not contain fulltext BACKGROUND: Vaginal (re)construction can greatly improve the quality of life of indicated patients. If primary vaginoplasty fails, multiple surgical approaches exist for revision. The authors compared surgical results of laparoscopic intestinal versus full-thickness skin graft revision vaginoplasty. METHODS: A retrospective chart review of patients who underwent revision vaginoplasty at the authors' institution was conducted. Patient demographics, surgical characteristics, complications, hospitalization, reoperations, and neovaginal depth for both surgical techniques were recorded and compared. RESULTS: The authors studied a consecutive series of 50 transgender and three biological women who underwent revision vaginoplasty, of which 21 were laparoscopic intestinal and 32 were perineal full-thickness skin graft vaginoplasties, with a median clinical follow-up of 3.2 years (range, 0.5 to 19.7 years). Patient demographics did not differ significantly. There was no mortality. Two intraoperative rectal perforations (10 percent) occurred in the intestinal group versus six (19 percent) in the full-thickness skin graft group. Operative time was shorter for the full-thickness skin graft vaginoplasty group (131 +/- 35 minutes versus 191 +/- 45 minutes; p < 0.01). Hospitalization length did not differ significantly. Successful vaginal (re)construction was achieved in 19 intestinal (91 percent) and 26 full-thickness skin graft (81 percent) vaginoplasty procedures. A deeper neovagina was achieved with intestinal vaginoplasty (15.9 +/- 1.4 cm versus 12.5 +/- 2.8 cm; p < 0.01). CONCLUSIONS: Both laparoscopic intestinal and full-thickness skin graft vaginoplasty can be used as secondary vaginal reconstruction. Intraoperative and postoperative complications do not differ significantly, but rectal perforation was more prevalent in the full-thickness skin graft vaginoplasty group. Although the operative time of laparoscopic intestinal vaginoplasty is longer, adequate neovaginal depth was more frequently achieved than in secondary perineal full-thickness skin graft vaginoplasty. CLINCAL QUESTION/LEVEL OF EVIDENCE: Therapeutic, III.

Objective intrapartum referrals are high-risk situations. To ensure patient safety, care professionals need to have a shared understanding of a labouring woman's situation. We aimed to gain insight into similarities and differences between midwives and obstetricians in the assessment of a prolonged first stage of labour and the decision to refer a woman to a clinical setting in the Netherlands. Design factorial survey. Setting in the Netherlands, the main caregivers for women with low risks of pathology are primary-care midwives working in the locality. Approximately half of all women start labour under supervision of primary-care midwives. Roughly 40% of these women are referred to a hospital during labour, where obstetricians take over responsibility. In 2013, the reason for referral for 5161 women (14.1% of all referrals during labour) was a prolonged first stage of labour. Participants respondents consisted of primary-care midwives ( N =69), obstetricians ( N =47) and hospital based midwives, known as clinical midwives ( N =31). Measurements each respondent assessed seven hypothetical vignettes. The assessment of a prolonged first stage of labour and the decision to refer a woman to a clinical setting based on this indication were used as outcome measures, rated on a 7-point Likert scale (1=very unlikely to 7=very likely). Data were analysed using a linear multilevel model with a two-level hierarchy. Findings compared to primary-care midwives, obstetricians were more likely to define a prolonged first stage of labour when progress in cervical dilation was slow (b: 1.11; 95% CI: 0.66 – 1.57). The attributes parity, progress, intensity of uterine contractions and the woman's state of mind, were used by all three groups in the decision to refer a woman to clinical setting based on a prolonged first stage of labour. Key conclusion and implications for practice we found relevant interprofessional differences and similarities in the assessment of a prolonged first stage of labour and consequent referral. Further interprofessional alignment of clinical assessments, for instance through interprofessional discussions and a review of professional guidelines, might help to improve collaborative care.

Background Autologous fat grafting (AFG) is increasingly used in cosmetic surgery. However, its efficacy and safety are still ambiguous. Both a comprehensive overview and recapitulation of the relevant literature provide current evidence on the efficacy and outcomes of AFG in cosmetic breast surgery. Objectives This review provides an up-to-date overview of the literature on AFG in cosmetic breast augmentation. Methods A systematic review of the literature on AFG used for cosmetic breast augmentation was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. This study included selected studies that were published between January 1996 and February 2016 and reported on 10 patients or more who had a minimal mean follow-up period of 1 year. Results In this study, 22 articles that reported on 3565 patients with follow-up periods ranging from 12 to 136 months were included. A complication rate of 17.2% (95% CI 15.9-18.5) was seen. Indurations were the most frequent complication (33.3%, 95% CI 20.4-46.3), followed by persistent pain (25%, 95% CI 0.5-49.5), and hematoma (16.4%, 95% CI 14.5-18.4). Mammograms revealed micro-calcifications (9.0%, 95% CI 6.4-11.5) and macro-calcifications (7.0%, 95% CI 3.8-10.2). The mean volume retention was 62.4% (range, 44.7-82.6%), with a satisfaction rate of 92% in patients and 89% in surgeons. Conclusions AFG is a promising method in achieving autologous cosmetic breast augmentation with satisfactory volume retention and satisfaction rates in eight and six studies, respectively. Complications and radiological findings are comparable to those after implant augmentation. Future studies should focus on cancer occurrence and detection to further substantiate AFG safety. In addition, grafting methods and the use of auxiliary procedures to identify factors leading to better outcomes in terms of volume retention should be investigated. Finally, objective questionnaires are needed to represent patient satisfaction. Level of Evidence 3 ![Graphic][1] Therapeutic [10.1093/asj/sjw119][2] [1]: /embed/inline-graphic-1.gif [2]: /lookup/doi/10.1093/asj/sjw119

Objectives Recent evidence suggests that a substantial minority of people clinically diagnosed with probable Alzheimer disease (AD) in fact do not fulfill the neuropathological criteria for the disease. A clinical hallmark of these phenocopies of AD is that these individuals tend to remain cognitively stable for extended periods of time, in contrast to their peers with confirmed AD who show a progressive decline. We aimed to examine the prevalence of patients clinically diagnosed with mild-to-moderate AD who do not experience the expected clinically significant cognitive decline and identify markers easily available in routine medical practice predictive of a stable cognitive prognosis in this population. Design Data were obtained from two independent, longitudinal, observational multicenter studies in patients with mild-to-moderate AD. Setting The two studies were the European “Impact of Cholinergic Treatment Use” (ICTUS) and the French “REseau sur la maladie d'Alzheimer FRancais” (REAL.FR). Participants We used prospective data of 756 patients enrolled in ICTUS and 340 enrolled in REAL.FR. Measurements A prediction rule of cognitive decline was derived on ICTUS using classification and regression tree analysis and then cross-validated on REAL.FR. A range of demographic, clinical and cognitive variables were tested as predictor variables. Results Overall, 27.9% of patients in ICTUS and 20.9% in REAL.FR did not decline over 2 years. We identified optimized cut-points on the verbal memory items of the Alzheimer Disease Assessment Scale-Cognitive Subscale capable of classifying patients at baseline into those who went on to decline and those who remained stable or improved over the duration of the trial. Conclusion The application of this simple rule would allow the identification of dementia cases where a more detailed differential diagnostic examination (eg, with biomarkers) is warranted. These findings are promising toward the refinement of AD screening in the clinic. For a further optimization of our classification rule, we encourage others to use our methodological approach on other episodic memory assessment tools designed to detect even small cognitive changes in patients with AD.

The Longitudinal Aging Study Amsterdam (LASA) is an ongoing longitudinal study of older adults in the Netherlands, which started in 1992. LASA is focused on the determinants, trajectories and consequences of physical, cognitive, emotional and social functioning. The study is based on a nationally representative sample of older adults aged 55 years and over. The findings of the LASA study have been reported in over 450 publications so far (see www.lasa-vu.nl ). In this article we describe the background and the design of the LASA study, and provide an update of the methods. In addition, we provide a summary of the major findings from the period 2011–2015.

Pupillometry is one method that has been used to measure processing load expended during speech understanding. Notably, speech perception (in noise) tasks can evoke a pupil response. It is not known if there is concurrent activation of the sympathetic nervous system as indexed by salivary cortisol and chromogranin A (CgA) and whether such activation differs between normally hearing (NH) and hard-of-hearing (HH) adults. Ten NH and 10 adults with mild-to-moderate hearing loss (mean age 52 years) participated. Two speech perception tests were administered in random order: one in quiet targeting 100% correct performance and one in noise targeting 50% correct performance. Pupil responses and salivary samples for cortisol and CgA analyses were collected four times: before testing, after the two speech perception tests, and at the end of the session. Participants rated their perceived accuracy, effort, and motivation. Effects were examined using repeated-measures analyses of variance. Correlations between outcomes were calculated. HH listeners had smaller peak pupil dilations (PPDs) than NH listeners in the speech in noise condition only. No group or condition effects were observed for the cortisol data, but HH listeners tended to have higher cortisol levels across conditions. CgA levels were larger at the pretesting time than at the three other test times. Hearing impairment did not affect CgA. Self-rated motivation correlated most often with cortisol or PPD values. The three physiological indicators of cognitive load and stress (PPD, cortisol, and CgA) are not equally affected by speech testing or hearing impairment. Each of them seem to capture a different dimension of sympathetic nervous system activity.

Tamoxifen, a small-molecule antagonist of the transcription factor estrogen receptor alpha (ERα) used to treat breast cancer, increases risks of endometrial cancer. However, no parallels of ERα transcriptional action in breast and endometrial tumors have been found that might explain this effect. In this study, we addressed this issue with a genome-wide assessment of ERα-chromatin interactions in surgical specimens obtained from patients with tamoxifen-associated endometrial cancer. ERα was found at active enhancers in endometrial cancer cells as marked by the presence of RNA polymerase II and the histone marker H3K27Ac. These ERα binding sites were highly conserved between breast and endometrial cancer and enriched in binding motifs for the transcription factor FOXA1, which displayed substantial overlap with ERα binding sites proximal to genes involved in classical ERα target genes. Multifactorial ChIP-seq data integration from the endometrial cancer cell line Ishikawa illustrated a functional genomic network involving ERα and FOXA1 together with the enhancer-enriched transcriptional regulators p300, FOXM1, TEAD4, FNFIC, CEBP8, and TCF12. Immunohistochemical analysis of 230 primary endometrial tumor specimens showed that lack of FOXA1 and ERα expression was associated with a longer interval between breast cancer and the emergence of endometrial cancer, exclusively in tamoxifen-treated patients. Our results define conserved sites for a genomic interplay between FOXA1 and ERα in breast cancer and tamoxifen-associated endometrial cancer. In addition, FOXA1 and ERα are associated with the interval time between breast cancer and endometrial cancer only in tamoxifen-treated breast cancer patients. Cancer Res; 76(13); 3773–84. ©2016 AACR.

Objective: To reduce cardiovascular risk after preeclampsia, we investigated the effect of framing, the perceived probability and its interaction, on the willingness to modify behavior. Methods: Participants scored their willingness to modify behavior on two cases with different probabilities of developing cardiovascular disease. Both cases were either presented as “chance of health” or “risk of disease”. Results: 165 questionnaires were analyzed. ANOVA revealed a significant effect of probability, non-significant effect of framing and a non-significant interaction between probability and framing. Conclusion: Perceived probability influences willingness to modify behavior to reduce cardiovascular risk after preeclampsia; framing and the interaction was not of influence.

Objectives To determine whether older people with advance directive for euthanasia (ADEs) are stable in their advance desire for euthanasia in the last years of life, how frequently older people with an ADE eventually request euthanasia, and what factors determine this. Design Mortality follow-back study nested in a cohort study. Setting The Netherlands. Participants Proxies of deceased members of a cohort representative of Dutch older people (n = 168) and a cohort of people with advance directives (n = 154). Measurements Data from cohort members (possession of ADE) combined with after-death proxy information on cohort members’ last 3 months of life. Multiple logistic regression analysis was performed on determinants of a euthanasia request in individuals with an ADE. Results Response rate was 65%. One hundred forty-two cohort members had an ADE at baseline. Three months before death, 87% remained stable in their desire for euthanasia; 47% eventually requested euthanasia (vs 6% without an ADE), and 16% died after euthanasia. People with an ADE were more likely to request euthanasia if they worried about loss of dignity. Conclusion The majority of older adults who complete an ADE will have a stable preference over time, but an advance desire for euthanasia does not necessarily result in a euthanasia request. Writing an ADE may reflect a person's need for reassurance that they can request euthanasia in the future.

Background/Aims Population-based surveys on diabetes and diabetic retinopathy (DR) are necessary to increase awareness and develop screening and therapeutic programmes. The aim was to estimate the prevalence of DR in older adults of different ethnic backgrounds in Suriname. Methods Fifty clusters of 60 people aged ≥50 years were randomly selected with a probability proportional to the size of the population unit. Eligible people were randomly selected through compact segment sampling and examined using the Rapid Assessment of Avoidable Blindness plus Diabetic Retinopathy (RAAB + DR) protocol. Participants were classified as having diabetes if they: were previously diagnosed with diabetes; were receiving treatment for glucose control; had a random blood glucose level >200 mg/dL. These participants were dilated for funduscopy, assessed for DR following the Scottish DR grading protocol and evaluated for ethnicity and DR ophthalmic screening frequencies. Results A total of 2806 individuals was examined (response 93.6%). The prevalence of diabetes was 24.6%. In these patients any type of DR and/or maculopathy occurred in 21.6% and sight-threatening DR in 8.0%. Of the known diabetics, 34.2% never had an eye examination for DR and in 13.0% the last examination was >24 months ago. The prevalence of diabetes was significantly higher in Hindustani people compared with other major ethnic groups. Conclusions The prevalence of diabetes and diabetics without regular DR control in people aged ≥50 years in Suriname was higher than expected. The uptake for special services for DR has to be expanded to decrease patient delay and DR-induced blindness.

Objective “Lack of energy” or anergia is a common complaint associated with adverse outcomes in older people. There is a lack of knowledge on this symptom in the nursing home (NH) setting. The aim of this study was to investigate whether lack of energy was associated with hospitalization and mortality in NH residents. Design Longitudinal observational cohort study. Setting and Participants A total of 575 NH residents (72% women) in 13 French NHs from the Incidence of pNeumonia and related ConseqUences in nursing home Residents (INCUR) study cohort. Measurements Lack of energy was measured at the baseline visit as part of the 10-item Geriatric Depression Scale. Unadjusted and adjusted Cox proportional hazard regression models were performed to test the association of lack of energy with hospitalization events and mortality over 12 months of follow-up. Results The mean age of the study sample was 86.3 (SD = 7.5) years. At the baseline, 250 (43.5%) residents complained about lack of energy. Overall, 192 (33.4%) individuals experienced at least 1 hospitalization event and 98 (17.0%) died during the 12-month follow-up. Lack of energy was significantly associated with a higher risk of hospitalization (HR 1.35; 95% CI 1.02–1.80; P = .03), even after adjustment for potential confounders (HR 1.41; 95% CI 1.04–1.91; P = .02). No statistically significant association was found between lack of energy and 12-month mortality. Conclusion Lack of energy is a predictor of hospitalization in older people living in NHs. It may be considered a relevant clinical feature for identifying individuals at risk of adverse health outcomes, thus potentially serving as a screening tool for subsequently conducting a comprehensive geriatric assessment in this highly vulnerable and complex population.

Objective. The aim of this study was to investigate how patients experience diagnostic urological procedures performed by urologists, junior residents and senior residents, and to assess the influence of procedure-related factors on patient experiences. Methods. Data were collected during 222 procedures: 84 transrectal ultrasound-guided prostate biopsies (TRUSP; urologists n = 39, residents n = 45) and 138 urethrocystoscopies (UCS; urologists n = 44, residents n = 94) in six hospitals. Patient experiences were assessed using a questionnaire focusing on pain, comfort and satisfaction (visual analogue scale, 0-10) and communication aspects on a four-point Likert scale. Clinical observations were made to identify influencing factors. Results. Median values for patient experiences across procedures were 10 (range 510) for patient satisfaction, 2 (0-9) for pain and 8 (0-10) for comfort. Generalized estimating equations revealed no significant differences between urologists, senior residents and junior residents in terms of experienced patient comfort, satisfaction or pain. Procedural time was longer for residents, but this did not correlate significantly with patient-experienced comfort (p = 0.3). In UCS, patient comfort and satisfaction were higher in the supine position for male and female patients, respectively (p

Purpose To assess the correlation of intraocular retinoblastoma tumor size measured with magnetic resonance (MR) imaging in the prediction of histopathologically determined metastatic risk factors (postlaminar optic nerve invasion and massive choroidal invasion). Materials and Methods The ethics committee approved this retrospective multicenter study with a waiver of informed consent. The study population included 370 consecutive patients with retinoblastoma (375 eyes) who underwent baseline MR imaging, followed by primary enucleation from 1993 through 2014. Tumor sizes (maximum diameter and volume) were measured independently by two observers and correlated with histopathologic risk factors. Receiver operating characteristic curves were used to analyze the diagnostic accuracy of tumor size, and areas under the curve were calculated. Logistic regression analysis was performed to evaluate potential confounders. Results Receiver operating characteristic analysis of volume and diameter, respectively, yielded areas under the curve of 0.77 (95% confidence interval [CI]: 0.70, 0.85; P < .0001) and 0.78 (95% CI: 0.71, 0.85; P < .0001) for postlaminar optic nerve invasion (n = 375) and 0.67 (95% CI: 0.57, 0.77; P = .0020) and 0.70 (95% CI: 0.59, 0.80; P = .0004) for massive choroidal tumor invasion (n = 219). For the detection of co-occurring massive choroidal invasion and postlaminar optic nerve invasion (n = 219), volume and diameter showed areas under the curve of 0.81 (95% CI: 0.70, 0.91; P = .0032) and 0.83 (95% CI: 0.73, 0.93; P = .0016), respectively. Conclusion Intraocular tumor size shows a strong association with postlaminar optic nerve invasion and a moderate association with massive choroidal invasion. These findings provide diagnostic accuracy measures at different size cutoff levels, which could potentially be useful in a clinical setting, especially within the scope of the increasing use of eye-salvage treatment strategies. (©) RSNA, 2015 Online supplemental material is available for this article.

Item does not contain fulltext The human microbiota represents an important reservoir of antibiotic resistance. Moreover, the majority of antibiotics are prescribed in primary care. For this reason, we assessed the prevalence and antibiotic resistance of nasal carriage strains of Streptococcus pneumoniae, the most prevalent bacterial causative agent of community-acquired respiratory tract infections, in outpatients in nine European countries. Nasal swabs were collected between October 2010 and May 2011, from 32,770 patients, recruited by general practices in nine European countries. Overall prevalence of S. pneumoniae nasal carriage in the nine countries was 2.9%. The carriage was higher in men (3.7%) than in women (2.7%). Children (4-9 years) had a higher carriage prevalence (27.2%) compared with those older than 10 years (1.9%). The highest resistance observed was to cefaclor. The highest prevalence of multidrug resistance was found in Spain and the lowest prevalence was observed in Sweden.

Objectives To give insight into Dutch nursing staff’s attitudes and involvement regarding euthanasia. Methods The sample was recruited from a nation-wide existent research panel of registered nurses and certified nursing assistants. Descriptive analyses and multivariate logistic regression analyses were performed. Results 587 respondents (response of 65%) completed the questionnaire. The majority (83%) state that physicians have to discuss the decision about euthanasia with the nurses involved. Besides, 69% state that a physician should discuss a euthanasia request with nurses who have regular contact with a patient. Nursing staff who have religious or other beliefs that they consider important for their attitude towards end-of-life decisions, and staff working in a hospital or home care, are most likely to have this opinion. Being present during the euthanasia is quite unusual: only a small group (7%) report that this has ever been the case in their entire working life. Seven% (incorrectly) think they are allowed to administer the lethal drugs. Conclusion The majority want to be involved in decision-making processes about euthanasia. Not all are aware that they are not legally allowed to administer the lethal drugs. Practice implications Nursing staff should be informed of relevant existing legislation and professional guidelines.

Purpose To develop a comprehensive, conceptual model detailing the aspects of a child’s life (

Background Information on medication use and drug-related problems is important in the preparation of clinical medication reviews. Critical information can only be provided by patients themselves, but interviewing patients is time-consuming. Alternatively, patient information could be obtained with a questionnaire. Objective In this study the agreement between patient information on medication use and drug-related problems in older patients obtained with a questionnaire was compared with information obtained during an interview. Setting General practice in The Netherlands. Method A questionnaire was developed to obtain information on actual medication use and drug-related problems. Two patient groups ≥65 years were selected based on general practitioner electronic medical records in nine practices; I. polypharmacy and II. ≥1 predefined general geriatric problems. Eligible patients were asked to complete the questionnaire and were interviewed afterwards. Main outcome measure Agreement on information on medication use and drug-related problems collected with the questionnaire and interview was calculated. Results Ninety-seven patients participated. Of all medications used, 87.6 % (95 % CI 84.7–90.5) was reported identically in the questionnaire and interview. Agreement for the complete medication list was found for 45.4 % (95 % CI 35.8–55.3) of the patients. On drug-related problem level, agreement between questionnaire and interview was 75 %. Agreement tended to be lower in vulnerable patients characterized by ≥4 chronic diseases, ≥10 medications used and low health literacy. Conclusion Information from a questionnaire showed reasonable agreement compared with interviewing. The patients reported more medications and drug-related problems in the interview than the questionnaire. Taking the limitations into account, a questionnaire seems a suitable tool for medication reviews that may replace an interview for most patients. Electronic supplementary material The online version of this article (doi:10.1007/s11096-016-0258-9) contains supplementary material, which is available to authorized users.

Item does not contain fulltext INTRODUCTION: Intestinal vaginoplasty with a sigmoid colon or ileal segment is an established surgical technique for vaginal reconstruction. Little has been reported on long-term (functional) outcome and postoperative quality of life. AIMS: To assess the surgical and long-term psychological outcomes of secondary intestinal vaginoplasty performed from 1970 through 2000 in transgender women. METHODS: Transgender women who underwent intestinal vaginoplasty from 1970 through 2000 were identified from our hospital registry. Demographics, surgical characteristics, complications, and reoperations were recorded. Traceable women were invited to fill out a set of questionnaires (quality-of-life questionnaire, Female Sexual Function Index, Amsterdam Hyperactive Pelvic Floor Scale for Women, Female Genital Self-Imaging Scale, and self-evaluation of vaginoplasty questionnaire) and attend the outpatient clinic for physical, endoscopic, and histologic examination of the neovagina. MAIN OUTCOME MEASURES: Primary outcomes were complications, reoperations, self-perceived quality of life, and functional and esthetic self-evaluation. RESULTS: Twenty-four transgender women were identified who underwent intestinal vaginoplasty as a secondary procedure from 1970 through 2000. There were no intraoperative complications. Three intestinal neovaginas were surgically removed because of postoperative complications. Nineteen women (79%) underwent at least one genital reoperation, most commonly introitus plasty (n = 13, 54%). Five women were deceased at time of analysis. Nine women consented to partake in the study (median age = 58 years, range = 50-73; median postoperative time = 29.6 years, range = 17.2-34.3). They were generally satisfied with life and scored 5.9 of 7 on a subjective happiness scale. Neovaginal functionality was rated as 7.3 and appearance as 7.4 of 10. CONCLUSION: In our institution, intestinal vaginoplasty before 2000 was always performed as a revision procedure after a previous vaginoplasty had failed. Although surgical corrections were frequently necessary, women reported satisfaction with the surgical outcome and with life in general.

Obesity and low level of cardiorespiratory fitness are associated with high blood pressure in both adolescents and adults. The objective of this study was to assess the relationship of adiposity and cardiorespiratory fitness with resting blood pressure in 14-year-old male and female adolescents. Cross-sectional data on 310 adolescents (31.8% boys) from six high schools, who were participating in the on-going Physical Activity and Health Longitudinal Study, were collected. Height, weight, body mass index (BMI), percentage of body fat, waist circumference, waist-to-height ratio, predicted and resting systolic (SBP) and diastolic blood pressure (DBP) were assessed according to standard procedures. The prevalence of elevated SBP and DBP were 4.9% and 6.5%, respectively. The highest prevalence of elevated blood pressure (SBP=10% and DBP=15%) were measured in overweight adolescents, who also performed poorly for predicted VO(2max)(M=26.66 ml kg(-1 )min(-1)±6.44) compared with underweight and normal-weight adolescents. Multiple regression showed that BMI was positively associated with SBP (β=0.77, P=0.005) and VO(2max) was negatively associated with DBP (β=-0.43, P=0.001). Overweight adolescents presented with a relatively high prevalence of elevated blood pressure and poor health-related fitness. Fatness and poor cardiorespiratory fitness were positively associated with elevated SBP and DBP, respectively. In view of the health implications of these findings, strategic interventions are needed to promote obesity-reduction programmes and physical activities in adolescents.

Using data from 1,184 women in the MRC National Survey of Health and Development, we estimated associations between education and Ryff’s environmental mastery scale scores at age 52. Confirmatory factor analysis indicated two subscales, here termed mastery skills and mastery accomplishments. Low education was associated with higher mastery skills. This was partly explained by childhood socioeconomic position, as mastery was lower among those with fathers in the most and least advantaged occupational classes. Education was not associated with mastery accomplishments in unadjusted models. Lower ambitions for family/home were associated with higher mastery accomplishments and may have partly suppressed as an association between education and mastery accomplishments. This study highlights childhood as well as adult correlates of mastery and adds to mounting evidence that higher mastery is not universally found among those who are more educated.

The Dutch digits-in-noise test (NL DIN) and the American-English version (US DIN) are speech-in-noise tests for diagnostic and clinical usage. The present study investigated differences between NL DIN and US DIN speech reception thresholds (SRTs) for a group of native Dutch-speaking listeners.In experiment 1, a repeated-measures design was used to compare SRTs for the NL DIN and US DIN in steady-state noise and interrupted noise for monaural, diotic, and dichotic listening conditions. In experiment 2, a subset of these conditions with additional speech material (i.e. US DIN triplets without inter-digit coarticulation/prosody) was used.Experiment 1 was conducted with 16 normal-hearing Dutch students. Experiment 2 was conducted with nine different students.No significant differences between SRTs measured with the NL DIN and US DIN were found in steady-state noise. In interrupted noise the US DIN SRTs were significantly better in monaural and diotic listening conditions. Experiment 2 demonstrated that these better SRTs cannot be explained by the combined effect of inter-digit coarticulation and prosody in the American-English triplets.The NL DIN and US DIN are highly comparable and valuable tests for measuring auditory speech recognition abilities. These tests promote across-language comparisons of results.

Purpose The study aims to describe mechanisms that contribute to the tendency towards continuing chemotherapy in patients with advanced cancer. Methods The study conducted qualitative observations of outpatient clinic visits of 28 patients with advanced cancer (glioblastoma and metastatic colorectal cancer). Results We uncovered four mechanisms in daily oncology practice that can contribute to the tendency towards continuing chemotherapy in patients with advanced cancer: (1) “presenting the full therapy sets the standard”—patients seemed to base their justification for continuing chemotherapy on the “standard” therapy with the maximum number of cycles as presented by the physician at the start of the treatment; (2) “focus on standard evaluation moments hampers evaluation of care goals”—whether or not to continue the treatment was mostly only considered at standard evaluation moments; (3) “opening question guides towards focus on symptoms”—most patients gave an update of their physical symptoms in answer to the opening question of “How are you doing?” Physicians consequently discussed how to deal with this at length, which often took up most of the visit; (4) “treatment is perceived as the only option”—patients mostly wanted to continue with chemotherapy because they felt that they had to try every available option the physician offered. Physicians also often seemed to focus on treatment as the only option. Conclusion Discussing care goals more regularly with the patient, facilitated for instance by implementing early palliative care, might help counter the mechanisms and enable a more well-considered decision. This could be either stopping or continuing chemotherapy.

Background Robin Sequence (RS) is usually defined as the combination of micrognathia, glossoptosis and upper airway obstruction. No objective criteria to diagnose RS exist. To compare management strategy results, a single RS definition using objective criteria is needed. The most frequently used primary diagnostic tool for glossoptosis is awake Flexible Fiberoptic Laryngoscopy (aFFL). Objectives To determine the reliability of the aFFL videos as an independent diagnostic tool itself, rather than on the complete evaluation of a patient. Design, setting, participants All RS individuals from an existing cohort with an available aFFL video were included retrospectively. Thirty age-matched patients without pathologic findings on aFFL were used as controls. aFFL videos were scored by six otolaryngologists as: a. Marked glossoptosis, b. Mild glossoptosis, c. Severity unknown, d. No glossoptosis, e. Insufficient video quality. Videos were anonymised and rated twice, in altered sequences, after a washout period of minimally 2 weeks. Main outcome measures Inter-rater and intrarater agreement. Results Twenty-six videos of 16 RS patients and 30 videos of controls were included. Inter-rater agreement was fair in the whole group (κ: 0.320) and RS group (κ: 0.226), and fair to moderate in determining presence of glossoptosis (total group κ: 0.430; RS κ: 0.302; controls κ: 0.212). The intrarater agreement for the presence of glossoptosis in RS was moderate (κ: 0.541). Conclusions aFFL offers fair to moderate inter-rater agreement, with moderate intrarater agreement, in evaluating glossoptosis in RS. Using aFFL as the single tool in choosing management strategies in RS seems insufficient. There is need for a more reliable, patient friendly diagnostic tool or an internationally accepted aFFL scoring system, to diagnose glossoptosis in RS.

Background:The Canadian Assessment of Physical Literacy (CAPL) was conceptualized as a tool to monitor children’s physical literacy. The original model (fitness, activity behavior, knowledge, motor skill) required revision and relative weights for calculating/interpreting scores were required.Methods:Nineteen childhood physical activity/fitness experts completed a 3-round Delphi process. Round 1 was open-ended questions. Subsequent rounds rated statements using a 5-point Likert scale. Recommendations were sought regarding protocol inclusion, relative importance within composite scores and score interpretation.Results:Delphi participant consensus was achieved for 64% (47/73) of statement topics, including a revised conceptual model, specific assessment protocols, the importance of longitudinal tracking, and the relative importance of individual protocols and composite scores. Divergent opinions remained regarding the inclusion of sleep time, assessment/scoring of the obstacle course assessment of motor skill, and the need for an overall physical literacy classification.Conclusions:The revised CAPL model (overlapping domains of physical competence, motivation, and knowledge, encompassed by daily behavior) is appropriate for monitoring the physical literacy of children aged 8 to 12 years. Objectively measured domains (daily behavior, physical competence) have higher relative importance. The interpretation of CAPL results should be reevaluated as more data become available.

To identify the barriers from the perspective of consumers with low health literacy in using risk information as provided in cardiometabolic risk assessments.A qualitative thematic approach using cognitive interviews was employed.We performed interviews with 23 people with low health literacy/health numeracy, who were recruited through (1) several organisations and snowball sampling and (2) an online access panel. Participants completed the risk test of the Dutch national cardiometabolic risk assessment and viewed the personalized information about their risk. They were asked to answer probing questions about different parts of the information. The qualitative data were analysed by identifying main themes related to barriers in using the information, using a descriptive thematic approach.The four main themes identified were as follows: (1) People did not fully accept the risk message, partly because numerical information had ambiguous meaning; (2) people lacked an adequate framework for understanding their risk; (3) the purpose and setting of the risk assessment was unclear; and (4) current information tells nothing new: A need for more specific risk information.The main barriers were that the current presentation seemed to provoke undervaluation of the risk number and that texts throughout the test, for example about cardiometabolic diseases, did not match people's existing knowledge, failing to provide an adequate framework for understanding cardiometabolic risk. Our findings have implications for the design of disease risk information, for example that alternative forms of communication should be explored that provide more intuitive meaning of the risk in terms of good versus bad.What is already known on this subject? Online disease risk assessments have become widely available internationally. People with low SES and health literacy tend to participate less in health screening. Risk information is difficult to understand, yet little research has been carried out among people with low health literacy. What does this study add? People with low health literacy do not optimally use risk information in an online cardiometabolic risk assessment. The texts provided in the cardiometabolic risk assessment do not suit to their existing knowledge. The typical risk communication (numbers, bar graph, verbal label) seems to provoke undervaluation of risk.

Item does not contain fulltext OBJECTIVES: To describe observations of suffering in patients with dementia from the diagnosis of pneumonia until cure or death. DESIGN: Prospective observational study between January 2012 and May 2014. SETTING: Dutch nursing homes (32). PARTICIPANTS: Nursing home patients with dementia and pneumonia (n = 193). MEASUREMENTS: Independent observers performed observations of patients with dementia scheduled 13 times within the 15 days following diagnosis of pneumonia; twice daily in the first 2 days- to observe discomfort (Discomfort Scale-Dementia of Alzheimer Type; range 0-27), comfort (End Of Life in Dementia-Comfort Assessment in Dying; range 14-42), pain (Pain Assessment in Advanced Dementia; range 0-10), and dyspnea (Respiratory Distress Observation Scale; range 0-16). RESULTS: Observational data were obtained for 208 cases of pneumonia in 193 patients. In 71.2% of cases, patients received 1 or more treatments to relieve symptoms such as antipyretics, opioids, or oxygen; 89.4% received antibiotics. Discomfort was highest 1 day after diagnosis [mean Discomfort Scale-Dementia of Alzheimer Type score 8.1 (standard deviation, SD 5.8)], then declined, and stabilized around day 10 [mean 4.5 (SD 4.1)], or increased in the days preceding death. Observed pain and dyspnea followed a comparable pattern. Discomfort patterns did not differ much between cases treated with and without antibiotics. CONCLUSIONS: Pneumonia in patients with dementia involved elevated levels of suffering during 10 days following diagnosis and in the days preceding death. Overall observed discomfort was low compared with prior Dutch studies, and the number of treatments to relieve symptoms was higher. Future studies should examine whether symptoms of pneumonia can be relieved even more, and what treatments are the most effective.

Purpose Although the prevalence of depression in visually impaired older persons is high, the association between vision loss and depression seems to be influenced by factors other than visual impairment. In this study, the role of vision loss, functional limitations and social network characteristics in relation to depressive symptoms was investigated. Methods Cross-sectional data (N = 1237) from the Longitudinal Aging Study Amsterdam were used to investigate the prevalence of depression (Center of Epidemiological Studies-Depression scale) within subgroups with increasing vision loss. In linear regression models, functional limitations and social network characteristics were examined as possible mediators in the association between vision loss and depression. Having a partner was considered to be a potential moderator. Results Although a significant linear trend was found in the presence of depressive symptoms with 14% in normally sighted, 23% in mild and 37% in severe vision loss (χ2(1) = 14.9; p

Ancestry-based carrier screening in the Ashkenazi Jewish population entails screening for specific autosomal recessive founder mutations, which are rarer among the general population. As it is now technically feasible to screen for many more diseases, the question arises whether this population prefers a limited ancestry-based offer or a pan-ethnic expanded carrier screening panel that goes beyond the diseases that are frequent in their own population, and is offered regardless of ancestry. An online questionnaire was completed by 145 individuals from the Dutch Jewish community (>= 18 years) between April and July 2014. In total, 64.8% were aware of the existence of ancestry-based carrier screening, and respondents were generally positive about screening. About half (53.8%) preferred pan-ethnic expanded carrier screening, whereas 42.8% preferred ancestry-based screening. Reasons for preferring pan-ethnic screening included 'everyone has a right to be tested', 'fear of stigmatization when offering ancestry-based panels', and 'difficulties with identifying risk owing to mixed backgrounds'. 'Preventing high healthcare costs' was the most important reason against pan-ethnic carrier screening among those in favor of an ancestry-based panel. In conclusion, these findings show that people from the Dutch Jewish community have a positive attitude regarding carrier screening in their community for a wide range of diseases. As costs of expanded carrier screening panels are most likely to drop in the near future, it is expected that these panels will receive more support in the future.

Although considered relevant, little is known about satisfaction with treatment and health-related quality of life (HRQoL) among lichen planus (LP) patients. There are only two studies that evaluated LP patients’ satisfaction with treatment and both used global, single item measures [1, 2]. Studies on the HRQoL of patients with oral LP showed that the impact of LP is comparable to other mouth diseases [3, 4] and that topical therapies improved HRQoL [5, 6]. In the present cross-sectional study [...]

Aims To investigate how general practitioners and community nurses value the support that they receive from a nurse case manager with expertise in palliative care, whether they think the case manager is helpful in realizing appropriate care and what characteristics of the patient and case management are associated with this view. Background For sustainable palliative care in an ageing society, basic palliative care is provided by generalists and specialist palliative care is reserved for complex situations. Acceptance of and cooperation with specialist palliative care providers by the general practitioner and community nurse is pivotal. Design Cross-sectional questionnaire study. Methods Questionnaire data from 168 general practitioners and 125 community nurses were analysed using chi-square tests, univariate and multivariate logistic regression. Data were gathered between March 2011–December 2013. Results Of general practitioners, 46% rated the case manager as helpful in realizing care that is appropriate for the patient; for community nurses this was 49%. The case manager did not hinder the process of care and had added value for patients, according to the general practitioners and community nurses. The tasks of the case manager were associated with whether or not the case manager was helpful in realizing appropriate care, whereas patient characteristics and the number of contacts with the case manager were not. Conclusion General practitioners and community nurses are moderately positive about the support from the case manager. To improve cooperation further, case managers should invest in contact with general practitioners and community nurses. (aut. ref.)

Abstracts Background The prevalence of dementia is increasing among non-western immigrants. It is known that family care is provided relatively often among immigrant groups. Until now, however, relatively little was known about how relatives of people with dementia in the immigrant communities perceive family care. This study therefore focuses on describing the perspectives of female Turkish, Moroccan and Surinamese Creole family carers in the Netherlands about providing family care to a close relative with dementia. Methods Forty-one individual interviews and six focus group interviews ( n=28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia. A qualitative analysis of the interviews has been carried out, supported by the software MaxQda. Results Related to their cultural and religious backgrounds, female family carers with Turkish, Moroccan or Surinamese Creole origins see family care as a task that they should carry out with respect and love. They feel that family care is superior to professional care and that it is principally a task for women. If men do have a role in family care, then it generally covers non-physical aspects. Despite the fact that the family carers interviewed listed aspects that make caring for a close relative with dementia difficult, they do say that they get a great deal of satisfaction from providing this care. In Turkish and Moroccan families in particular this type of care leads to more recognition and appreciation of the daughter or daughter-in-law who is giving it. Conclusion Family carers of Turkish, Moroccan or Surinamese Creole origin derive a great deal of satisfaction from giving family care to a relative with dementia. This fulfilment largely outweighs the burden of care. Professional support or information for these family carers can be improved by also focusing on the positive aspects of providing family care instead of an exclusive focus on reducing the burden.

Background: Measuring pain is important for the adequate pain management of postoperative patients. The actual compliance with pain assessment in postoperative patients after implementation of a national safety program is unknown.Objectives: The aim of this study is to examine the compliance with pain assessment in postoperative patients after implementation of a national safety program, according to the national quality indicators for pain assessment in postoperative patients. Furthermore, organisational factors associated with this compliance were determined.Study design: In this study, two data sources were used: 1) data from an evaluation study of the Dutch Hospital Patient Safety Program; and 2) data from a questionnaire survey.Methods: The compliance with two different pain process indicators was determined: 1) 3 pain measurements a day, all three full days after surgery; and 2) >= 1 pain measurement a day, all three full days after surgery. Multilevel logistic regression analysis was used to investigate the association between organisational factors in hospitals and compliance with pain process indicators.Results: Data of 3895 patient records from 16 hospitals was included in this study. In 12% of the postoperative patients, pain was measured 3 times a day, all three full days after surgery. In 53% of the postoperative patients, pain was measured >= 1 time a day, all three full days after surgery. Compliance was highest in general hospitals compared to tertiary teaching and academic hospitals, and was statistically significantly higher at the surgery and surgical oncology department compared to the other departments.Conclusions: Low compliance was shown with pain assessment in postoperative patients, according to the process indicator pain after surgery in Dutch hospitals. This suggests that the implementation of measuring pain in hospitals is still insufficient. (C) 2016 Elsevier Ltd. All rights reserved.

Objectives The aim of this study was to examine the association between physical frailty and social functioning among older adults, cross-sectionally and prospectively over 3 years. Study design The study sample consisted of 1115 older adults aged 65 and over from two waves of the Longitudinal Aging Study Amsterdam, a population based study. Main outcome measures Frailty was measured at T1 (2005/2006) using the criteria of the frailty phenotype, which includes weight loss, weak grip strength, exhaustion, slow gait speed and low physical activity. Social functioning was assessed at T1 and T2 (2008/2009) and included social network size, instrumental support, emotional support, and loneliness. Results Cross-sectional linear regression analyses adjusted for covariates (age, sex, educational level and number of chronic diseases) showed that pre-frail and frail older adults had a smaller network size and higher levels of loneliness compared to their non-frail peers. Longitudinal linear regression analyses adjusted for covariates and baseline social functioning showed that frailty was associated with an increase in loneliness over 3 years. However, the network size and levels of social support of frail older adults did not further decline over time. Conclusions Frailty is associated with poor social functioning, and with an increase in loneliness over time. The social vulnerability of physical frail older adults should be taken into account in the care provision for frail older adults. Conclusions Frailty is associated with poor social functioning, and with an increase in loneliness over time. The social vulnerability of physical frail older adults should be taken into account in the care provision for frail older adults. Refereed/Peer-reviewed

BACKGROUND: Timely end-of-life (EOL) discussions between patients and physicians are considered essential for high-quality EOL care, but research shows that these discussions frequently do not occur or occur late. In oncology, one barrier for timely EOL discussions is poor collaboration between oncologic specialists and GPs.OBJECTIVE: To explore interprofessional communication and coordination between oncologic specialists and GPs on EOL discussions.METHODS: We conducted in-depth interviews with 16 GPs and 14 oncologic specialists. Interviews were recorded, transcribed verbatim and analysed using qualitative content analysis.RESULTS: EOL discussions were primarily considered the role of the GP, but oncologists' perceptions of their own roles in discussing EOL issues varied. Interprofessional coordination on who discusses what and when was mostly absent. Interprofessional communication of EOL issues usually proceeded using the patient as intermediary. This functioned well but only if three essential conditions were met: the specialist being realistic to patients about limits of treatment, informing the GP adequately and the GP being proactive in initiating EOL issues in time. However, when these conditions were absent, timely EOL discussions did not seem to occur.CONCLUSIONS: EOL discussions are rarely a subject of direct interprofessional communication and mainly proceed through the patient as intermediary. For implementation of EOL discussions into regular care, earlier interprofessional communication and coordination is needed, particularly if barriers for such discussions occur.

To describe the epidemiology and aetiology of ocular trauma in school-aged children who previously visited the Suriname Eye Centre (SEC) of the Academic Hospital Paramaribo. In a hospital-based retrospective study, all cases of children who were school aged (8-15 years) at the time of the survey and previously underwent evaluation and/or treatment at the SEC because of ocular trauma were analysed. Demographic and ophthalmologic data were taken out of patient records; eye injuries were classified using the Birmingham Eye Trauma Terminology classification system. Main outcome measures were type of injury, mechanism/cause of injury, final visual acuity (VA), hospitalization, patient delay and patient compliance. Five hundred and thirty-eight records were analysed which included 35 open globe injuries (OGI) (7%), 458 closed globe injuries (85%), five orbital fractures (1%) and 40 eyelid injuries (7%). The most frequent causes of trauma represented body parts (18%) and sticks or branches (13%) and resulted from poking (20%) or punching (13%) the eye. Final VA < 6/60 was reported in 58% of registered OGI. Where living in rural areas (p = 0.007), OGI (p < 0.0001) and poor compliance to scheduled check-ups (p < 0.0001) were statistically significantly related to an unfavourable outcome, patient delay was not. Patients having OGI were more often hospitalized than children with other injuries (p < 0.0001). This is the first study providing data on childhood ocular trauma in Suriname. As the majority of childhood injuries were avoidable, new policies should aim at developing effective, targeted preventive strategies to promote awareness, parental supervision, immediate action and compliance

Item does not contain fulltext INTRODUCTION: Puberty-suppressing hormonal treatment may result in penoscrotal hypoplasia in transgender women, making standard penile inversion vaginoplasty not feasible. For these patients, intestinal vaginoplasty is a surgical alternative, but knowledge on patient-reported postoperative outcomes and quality of life is lacking. AIMS: To assess patient-reported functional and esthetic outcomes, quality of life, satisfaction, and sexual well-being after primary total laparoscopic intestinal vaginoplasty in transgender women. METHODS: A survey study was performed on transgender women who underwent primary total laparoscopic intestinal vaginoplasty with at least 1 year of clinical follow-up. Thirty-one transgender women completed the questionnaires (median age at time of surgery = 19.1 years, range = 18.3-45.0) after a median clinical follow-up of 2.2 years (range = 0.8-7.5). Consenting women were asked to complete a combined questionnaire of the Subjective Happiness Scale, the Satisfaction With Life Scale, Cantril's Ladder of Life Scale, the Female Sexual Function Index, the Female Genital Self-Imaging Scale, the Amsterdam Hyperactive Pelvic Floor Scale-Women, and a questionnaire addressing postoperative satisfaction. MAIN OUTCOME MEASURES: Patient-reported functional and esthetic outcomes and postoperative quality of life. RESULTS: Patients graded their life satisfaction a median of 8.0 (range = 4.0-10.0) on Cantril's Ladder of Life Scale. Patients scored a mean total score of 27.7 +/- 5.8 on the Satisfaction With Life Scale, which indicated high satisfaction with life, and a mean total score of 5.6 +/- 1.4 on the Subjective Happiness Scale. Functionality was graded a median score of 8.0 of 10 (range = 1.0-10.0) and esthetics a score of 8.0 out of 10 (range = 3.0-10.0). The mean Female Sexual Function Index total score of sexually active transgender women was 26.0 +/- 6.8. CONCLUSION: This group of relatively young transgender women reported satisfactory functional and esthetic results of the neovagina and a good quality of life, despite low Female Sexual Function Index scores.

OBJECTIVE:The authors first examined the influence of moderate to severe congenital hearing impairment (CHI) on the correctness of samples of elicited spoken language. Then, the authors used this measure as an indicator of linguistic proficiency and examined its effect on performance in language reception, independent of bottom-up auditory processing.DESIGN:In groups of adults with normal hearing (NH, n = 22), acquired hearing impairment (AHI, n = 22), and moderate to severe CHI (n = 21), the authors assessed linguistic proficiency by analyzing the morphosyntactic correctness of their spoken language production. Language reception skills were examined with a task for masked sentence recognition in the visual domain (text), at a readability level of 50%, using grammatically correct sentences and sentences with distorted morphosyntactic cues. The actual performance on the tasks was compared between groups.RESULTS:Adults with CHI made more morphosyntactic errors in spoken language production than adults with NH, while no differences were observed between the AHI and NH group. This outcome pattern sustained when comparisons were restricted to subgroups of AHI and CHI adults, matched for current auditory speech reception abilities. The data yielded no differences between groups in performance in masked text recognition of grammatically correct sentences in a test condition in which subjects could fully take advantage of their linguistic knowledge. Also, no difference between groups was found in the sensitivity to morphosyntactic distortions when processing short masked sentences, presented visually.CONCLUSIONS:These data showed that problems with the correct use of specific morphosyntactic knowledge in spoken language production are a long-term effect of moderate to severe CHI, independent of current auditory processing abilities. However, moderate to severe CHI generally does not impede performance in masked language reception in the visual modality, as measured in this study with short, degraded sentences. Aspects of linguistic proficiency that are affected by CHI thus do not seem to play a role in masked sentence recognition in the visual modality.

Purpose: In response to the increased emphasis placed on older people’s self-reliance in many welfare societies, we aimed to develop and validate a measurement instrument, assessing perceived control in health care among older adults with care needs. The target group consists of older people who live (semi-)independently and use professional health care, with or without informal care. Methods: Phase I (development) of the study consisted of the construction of the instrument based on the input from a variety of stakeholders. Phase II (validation) entailed a quantitative study in a sample of 247 respondents selected from the Longitudinal Aging Study Amsterdam, to assess the instrument’s construct validity (structural validity and hypotheses testing) and reliability (internal consistency). Results: The questionnaire consists of 29 items, related to organizing professional care, communication with care professionals, health management in the home situation, planning (more) complex care in the future, and perceived support from the social network. Based on a factor analysis, we identified three subscales: (I.) ‘perceived personal control in health care’; (II.) ‘anticipated personal control regarding future health care’; and (III.) ‘perceived support from the social network,’ with internal consistencies varying from Cronbach’s α = .71 to.90. Factor I was associated with mastery, self-efficacy, self-esteem (r = .31–.35) and factor III with social loneliness (r = −.42). Factor II correlated less strongly with mastery, self-efficacy, and self-esteem (r < .30). Conclusion: Our questionnaire revealed sufficient construct validity and internal consistency. The instrument provides a basis for further quantitative research regarding control, especially in relation to health care-related outcomes.

Objectives Depressive symptoms are common in patients with cancer and tend to increase as death approaches. The study aims were to examine the prevalence of depressive symptoms in patients with cancer in their final 24 h, and their association with other symptoms, sociodemographic and care characteristics. Methods A stratified sample of deaths was drawn by Statistics Netherlands. Questionnaires on patient and care characteristics were sent to the physicians (N=6860) who signed the death certificates (response rate 77.8%). Adult patients with cancer with non-sudden death were included (n=1363). Symptoms during the final 24 h of life were assessed on a 1–5 scale and categorised as 1=no, 2–3=mild/moderate and 4–5=severe/very severe. Results Depressive symptoms were registered in 37.6% of the patients. Patients aged 80 years or more had a reduced risk of having mild/moderate depressive symptoms compared with those aged 17–65 years (OR 0.70; 95% CI 0.50 to 0.99). Elderly care physicians were more likely to assess patients with severe/very severe depressive symptoms than patients with no depressive symptoms (OR 4.18; 95% CI 1.48 to 11.76). Involvement of pain specialists/palliative care consultants and psychiatrists/psychologists was associated with more ratings of severe/very severe depressive symptoms. Fatigue and confusion were significantly associated with mild/moderate depressive symptoms and anxiety with severe/very severe symptoms. Conclusions More than one-third of the patients were categorised with depressive symptoms during the last 24 h of life. We recommend greater awareness of depression earlier in the disease trajectory to improve care.

As part of long-term care reforms, home-care organisations in the Netherlands are required to strengthen the linkage between formal and informal caregivers of home-dwelling older adults. Information on the variety in mixed care networks may help home-care organisations to develop network type-dependent strategies to connect with informal caregivers. This study first explores how structural (size, composition) and functional features (contact and task overlap between formal and informal caregivers) contribute to different types of mixed care networks. Second, it examines to what degree these network types are associated with the care recipients' characteristics. Through home-care organisations in Amsterdam, the Netherlands, we selected 74 frail home-dwelling clients who were receiving care in 2011-2012 from both informal and formal caregivers. The care networks of these older adults were identified by listing all persons providing help with five different types of tasks. This resulted in care networks comprising an average of 9.7 caregivers, of whom 67% were formal caregivers. On average, there was contact between caregivers within 34% of the formal-informal dyads, and both caregivers carried out at least one similar type of task in 29% of these dyads. A principal component analysis of size, composition, contact and task overlap showed two distinct network dimensions from which four network types were constructed: a small mixed care network, a small formal network, a large mixed network and a large formal network. Bivariate analyses showed that the care recipients' activities of daily living level, memory problems, social network, perceived control of care and level of mastery differed significantly between these four types. The results imply that different network types require different actions from formal home-care organisations, such as mobilising the social network in small formal networks, decreasing task differentiation in large formal networks and assigning co-ordination tasks to specific dyads in large mixed care networks.

Introduction Medication-related problems can cause serious adverse drug events (ADEs) that may lead to hospitalization of the patient. There are multiple screening methods to detect and reduce potentially inappropriate medications (PIMs) and potential prescribing omissions (PPOs). Whether this will result in less medication-related hospitalizations is unknown. The study objective was to assess the risk of preventable medication-related hospital admissions associated with potentially inappropriate prescribing, using the Beers 2012 and the Screening Tool of Older Person's Prescriptions and the Screening Tool to Alert doctors to Right Treatment (STOPP & START) 2008 criteria. Design, setting and participants A nested case-control study was conducted with a subset of Dutch participants from the Hospital Admissions Related to Medication (HARM) study. Cases were defined as patients aged >= 65 years with a potentially preventable medication-related hospital admission. For each case, one control was selected, matched for age and sex. The primary determinant was the presence of one or more PIMs according to the Beers 2012 and STOPP 2008 criteria. The secondary determinant was the presence of one or more PIMs and PPOs according to the STOPP & START 2008 criteria. The strength of the association between inappropriate prescribing and medication-related hospital admission was evaluated with multivariate logistic regression and expressed as odds ratios (ORs) with 95 % confidence intervals (CIs). Results The prevalence of Beers 2012 criteria PIMs in the total cohort was 44.4 %. The prevalence of STOPP & START 2008 criteria PIMs and PPOs were, respectively, 34.1 and 57.7 %. STOPP 2008 criteria PIMs were associated with preventable medication-related hospital admissions [OR adjusted for number of drugs and comorbidities (ORadj) 2.30, 95 % CI 1.30-4.07], whereas there was no association with Beers 2012 criteria PIMs (ORadj 1.49, 95 % CI 0.90-2.47). STOPP PIMs and START PPOs together were also associated with preventable medication-related hospital admissions (ORadj 3.47, 95 % CI 1.70-7.09). Conclusion Our study shows that patients with potentially inappropriate prescribing detected with the STOPP & START 2008 criteria are at risk of preventable medication-related hospital admissions. The STOPP & START 2008 criteria can be used to identify older people at risk of medication-related problems.

Accessible summaryWhat is known on the subject? Nurses play an important role in monitoring and supporting patients and their relatives at the end of life. To date, there is a lack of recent empirical research on the experiences of psychiatric nurses in providing palliative care to psychiatric patients who suffer from life-threatening physical co-morbidity. The limited literature available indicates that palliative care for psychiatric patients needs to be improved. What this paper adds to existing knowledge? This explorative study is unique in offering an insight into current palliative care practice for psychiatric patients and showed that one in three nurses working in Dutch mental health facilities is involved in palliative care provision. Important elements of palliative care, i.e.: care domains, multidisciplinary approach, early recognition and family care are recognized by nurses. Moreover, in palliative care for psychiatric patients there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Patient characteristics and little attention for palliative care within mental health facilities were found to hamper timely and adequate palliative care provision by nurses. What are the implications for research and practice? Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of this vulnerable patient group. Since mental health care is increasingly provided ambulatory, the development of palliative care for psychiatric patients outside mental health facilities should be closely monitored. AbstractIntroduction Recent empirical research on palliative care for psychiatric patients is lacking. Aim The aim of this study was to explore nurses’ experiences with and identify barriers to providing palliative care to psychiatric patients in Dutch mental health facilities. Methods Mixed-methods; 137 nurses working in Dutch mental health facilities completed a survey. Nine participated in in-depth interviews. Results Thirty-six percent of nurses had experience with providing palliative care to psychiatric patients with physical co-morbidity in the past 2 years. Of all patients, 63% received physical care before death, 46% psychosocial care and 33% spiritual care. In 91% of all cases, care was provided by multidisciplinary teams. Patient characteristics and little attention to palliative care were barriers for timely and adequate palliative care. Discussion In palliative care for psychiatric patients, there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Yet there are barriers to adequate palliative care provision. Implications for practice Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of psychiatric patients. Since mental health care is increasingly provided ambulatory, palliative care for psychiatric patients outside mental health facilities should be closely monitored.

Background: Neonatal dried blood spots (DBS) present a wealth of data. Currently, many countries discuss DBS storage, management and use. We collected data in the Netherlands on the awareness and views of an unheard stakeholder: mothers (-to-be). Methods: A survey was conducted on an Amsterdam pregnancy fair website in 2011. We included 1,272 women who were pregnant and/or had at least one child ≤5 years old. A descriptive analysis was used to score the awareness of and views on policies regarding the length of storage and secondary use. Results: 18.9% of mothers (n = 1,272) were aware of all five current DBS screening, storage and use policies. The views were positive for all ten potential specific secondary uses. Most support was given to etiology research, while test development by a company was least supported. Extending the DBS storage beyond the 5-year status quo was approved by 67.8% of the respondents, indefinite storage was approved by 54.7%. Conclusion: Mothers indicate support of several secondary uses and prolonged storage of DBS but report a low awareness of current storage and secondary use policies. Efforts must be made to involve parents as key stakeholders in DBS policies. This could be achieved through a parent-led advisory structure.

Background The need for home care is rising in many Western European countries, due to the ageing population and governmental policies to substitute institutional care with home care. At the same time, a general shortage of qualified home-care staff exists or is expected in many countries. It is important to retain existing nursing staff in the healthcare sector to ensure a stable home-care workforce for the future. However, to date there has been little research about the job factors in home care that affect whether staff are considering leaving the healthcare sector. Objective The main purpose of the study was to examine how home-care nursing staff's self-perceived autonomy relates to whether they have considered leaving the healthcare sector and to assess the possible mediating effect of work engagement. Design, setting and participants The questionnaire-based, cross-sectional study involved 262 registered nurses and certified nursing assistants employed in Dutch home-care organisations (mean age of 51; 97% female). The respondents were members of the Dutch Nursing Staff Panel, a nationwide group of nursing staff members in various healthcare settings (67% response rate). Methods The questionnaire included validated scales concerning self-perceived autonomy and work engagement and a measure for considering pursuing an occupation outside the healthcare sector. Logistic regression and mediation analyses were conducted to test associations between self-perceived autonomy, work engagement and considering leaving the healthcare sector. Results Nursing staff members in home care who perceive more autonomy are more engaged in their work and less likely to have considered leaving the healthcare sector. The positive association between self-perceived autonomy and considering leaving, found among nursing staff members regardless of their level of education, is mediated by work engagement. Conclusion In developing strategies for retaining nursing staff in home care, employers and policy makers should target their efforts at enhancing nursing staff's autonomy, thereby improving their work engagement.