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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.

OBJECTIVE: To evaluate the effectiveness of hysteroscopy for the detection and treatment of endometrial polyps versus expectant management in women with postmenopausal bleeding (PMB), a thickened endometrium and benign endometrial sampling.DESIGN: Multicentre, randomised controlled trial.SETTING: Three academic hospitals and nine non-academic teaching hospitals in the Netherlands.POPULATION: Women with PMB, an endometrial thickness >4 mm and benign result from endometrial sampling.METHODS: Women were randomised to either further diagnostic workup by hysteroscopy (preceded by saline infusion sonography) or expectant management.MAIN OUTCOMES: The primary outcome measure was recurrence of PMB within a year after randomisation. Secondary outcome measures were time to recurrent bleeding and recurrent bleeding after more than 1 year. In the hysteroscopy group, the presence of polyps and the results of their histology were registered.RESULTS: Between January 2010 and October 2013, 200 women were randomised; 98 to hysteroscopy and 102 to expectant management. Within 1 year a total of 15 women (15.3%) in the hysteroscopy group experienced recurrent bleeding, versus 18 (18.0%) in the expectant management group (relative risk 0.85 (95% CI 0.46-1.59). In the hysteroscopy group, 50/98 (51%) polyps were diagnosed of which 6/98 (6%) showed evidence of endometrial (pre)malignancy; final pathology results after hysterectomy showed three women with hyperplasia with atypia and three women with endometrial cancer.CONCLUSION: In women with PMB, a thickened endometrium and benign endometrial sampling, operative hysteroscopy does not reduce recurrent bleeding. Hysteroscopy detected focal endometrial (pre)malignancy in 6% of women who had benign endometrial sampling. This finding indicates that in these women, further diagnostic workup is warranted to detect focal (pre)malignancies, missed by blind endometrial sampling.TWEETABLE ABSTRACT: In women with PMB, hysteroscopy does not reduce recurrent bleeding but is warranted to detect focal malignancy.

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.

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.

Due to an increased prevalence of chronic diseases, older individuals may experience a deterioration of their health condition in older ages, limiting their capacity for social engagement and in turn their well-being in later life. Focusing on care provision to grandchildren and (older) relatives (‘informal care’) as forms of engagement, this paper aims to identify which individual characteristics may compensate for health deficits and enable individuals with multimorbidity to provide informal care. We use data from the SHARE survey (2004–2012) for individuals aged 60 years and above in 10 European countries. Logistic regression estimates for the impact of different sets of characteristics on the decision to provide care are presented separately for people with and without multimorbidity. Adapting Arber and Ginn’s resource theory, we expected that older caregivers’ resources (e.g., income or having a spouse) would facilitate informal care provision to a greater extent for people with multimorbidity compared to those without multimorbidity, but this result was not confirmed. While care provision rates are lower among individuals suffering from chronic conditions, the factors associated with caregiving for the most part do not differ significantly between the two groups. Results, however, hint at reciprocal intergenerational support patterns within families, as the very old with multimorbidity are more likely to provide care than those without multimorbidity. Also, traditional gender roles for women are likely to be weakened in the presence of health problems, as highlighted by a lack of gender differences in care provision among people with multimorbidity.

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.

One of the leading causes of morbidity and premature mortality in older people is frailty. Frailty occurs when multiple physiological systems decline, to the extent that an individual's cellular repair mechanisms cannot maintain system homeostasis. This review gives an overview of the definitions and measurement of frailty in research and clinical practice, including: Fried's frailty phenotype; Rockwood and Mitnitski's Frailty Index (FI); the Study of Osteoporotic Fractures (SOF) Index; Edmonton Frailty Scale (EFS); the Fatigue, Resistance, Ambulation, Illness and Loss of weight (FRAIL) Index; Clinical Frailty Scale (CFS); the Multidimensional Prognostic Index (MPI); Tilburg Frailty Indicator (TFI); PRISMA-7; Groningen Frailty Indicator (GFI), Sherbrooke Postal Questionnaire (SPQ); the Gérontopôle Frailty Screening Tool (GFST) and the Kihon Checklist (KCL), among others. We summarise the main strengths and limitations of existing frailty measurements, and examine how well these measurements operationalise frailty according to Clegg's guidelines for frailty classification - that is: their accuracy in identifying frailty; their basis on biological causative theory; and their ability to reliably predict patient outcomes and response to potential therapies.

This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants, parents and caregivers, findings included that parent-initiated supported housing schemes made steps towards stimulating self-advocacy and autonomy for tenants. However, overprotective and paternalistic attitudes expressed by a significant number of parents, as well as structural constraints affecting the living schemes, created obstacles to tenants’ personal development. The study calls for consideration of interdependence as a model for the relationship of parents and adult offspring with disabilities. The benefits and tensions inherent within this relationship must be taken into consideration during inclusive community building.

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.

Little attention has been given to the involvement in formal learning activities (FLA) in the older population when considering different health statuses. The aim of this study is to explore the extent to which possible predictors (derived from previous research as well as a conceptual model) of FLA differ for older people in poor and good health. Data are used from SHARE 2010/2011 for the 50+ populations in 16 European countries. Poor health is defined as self-report of having two or more chronic diseases assessed by a medical doctor, i.e. multimorbidity. Possible predictors of learning activities represent individual characteristics: functional limitations, demography (age, gender, marital status and household size), human capital (achieved level of education), employment, income and participation in other social activities. To assess the predictors of FLA, logistic regression models are used and average marginal estimates are compared across groups. In addition to multimorbidity, labour market activity is used as a grouping variable. The average participation of individuals in the group with multimorbidity was nearly 50 % lower than that in the group in good health (6.5 vs. 13.3 %). Regardless of multimorbidity, human capital proved to be significant predictors of FLA, especially in those active on the labour market. However, the associations were weaker in the multimorbidity group. Also, significant associations were observed of other types of social activities, in particular cultural and leisure activity and volunteering, with FLA. This study suggests that similar factors are predictors of FLA in older people with and without multimorbidity.

It has been widely recognised that poor health is one of the main barriers to participation in volunteer activities in older age. Therefore, it is crucial to examine the participation of older people in volunteering, especially those in poor health. Based on the resource theory of volunteering, the aim of this study is to better understand the correlates of volunteering among older people with different health statuses, namely those without health problems (neither multimorbidity nor disability), those with mild health problems (multimorbidity or disability), and those with severe health problems (multimorbidity and disability). Data were drawn from the fourth wave (2011–2012, release 1.1.1) of the Survey of Health, Ageing and Retirement in Europe, which includes European people aged 50 years or older. The results showed that variables linked to volunteering were generally similar regardless of health status, but some differences were nevertheless identified. For older people with mild or severe health problems, for instance, depressive symptoms were negatively associated with their involvement in volunteer activities. We found a positive association of being widowed (rather than married) with volunteering in older people with particularly poor health, whereas high income was associated with volunteering in the case of mild health problems only. These results demonstrate that variables associated with volunteer participation partially differ between older people depending on their health status. These differences should be considered by policy makers in their attempts to promote volunteering in older people, as a means of preventing their social exclusion.

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.

Older people spend much time participating in leisure activities, such as taking part in organized activities and going out, but the extent of participation may differ according to both individual and environmental resources available. Chronic health problems become more prevalent at higher ages and likely necessitate tapping different resources to maintain social participation. This paper compares predictors of participation in social leisure activities between older people with and those without multimorbidity. The European Project on Osteoarthritis (EPOSA) was conducted in Germany, UK, Italy, The Netherlands, Spain and Sweden (N = 2942, mean age 74.2 (5.2)). Multivariate regression was used to predict social leisure participation and degree of participation in people with and without multimorbidity. Fewer older people with multimorbidity participated in social leisure activities (90.6 %), compared to those without multimorbidity (93.9 %). The frequency of participation was also lower compared to people without multimorbidity. Higher socioeconomic status, widowhood, a larger network of friends, volunteering, transportation possibilities and having fewer depressive symptoms were important for (the degree of) social leisure participation. Statistically significant differences between the multimorbidity groups were observed for volunteering and driving a car, which were more important predictors of participation in those with multimorbidity. In contrast, self-reported income appeared more important for those without multimorbidity, compared to those who had multimorbidity. Policies focusing on social (network of friends), physical (physical performance) and psychological factors (depressive symptoms) and on transportation possibilities are recommended to enable all older people to participate in social leisure activities.

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.

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.

To promote workplace learning for staff as well as students, a partnership was formed between a residential care organisation for older people and several nursing faculties in the Netherlands. This partnership took the form of two care innovation units; wards where qualified staff, students and nurse teachers collaborate to integrate care, education, innovation and research. In this article, the care innovation units as learning environments are studied from a student perspective to deepen understandings concerning the conditions that facilitate learning. A secondary analysis of focus groups, held with 216 nursing students over a period of five years, revealed that students are satisfied about the units' learning potential, which is formed by various inter-related and self-reinforcing affordances: co-constructive learning and working, challenging situations and activities, being given responsibility and independence, and supportive and recognisable learning structures. Time constraints had a negative impact on the units' learning potential. It is concluded that the learning potential of the care innovation units was enhanced by realising certain conditions, like learning structures and activities. The learning potential was also influenced, however, by the non-controllable and dynamic interaction of various elements within the context. Suggestions for practice and further research are offered.

OBJECTIVE: To investigate the biomedical scientist's perception of the prevailing publication culture.DESIGN: Qualitative focus group interview study.SETTING: Four university medical centres in the Netherlands.PARTICIPANTS: Three randomly selected groups of biomedical scientists (PhD, postdoctoral staff members and full professors).MAIN OUTCOME MEASURES: Main themes for discussion were selected by participants.RESULTS: Frequently perceived detrimental effects of contemporary publication culture were the strong focus on citation measures (like the Journal Impact Factor and the H-index), gift and ghost authorships and the order of authors, the peer review process, competition, the funding system and publication bias. These themes were generally associated with detrimental and undesirable effects on publication practices and on the validity of reported results. Furthermore, senior scientists tended to display a more cynical perception of the publication culture than their junior colleagues. However, even among the PhD students and the postdoctoral fellows, the sentiment was quite negative. Positive perceptions of specific features of contemporary scientific and publication culture were rare.CONCLUSIONS: Our findings suggest that the current publication culture leads to negative sentiments, counterproductive stress levels and, most importantly, to questionable research practices among junior and senior biomedical scientists.

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.

Introduction A language barrier has been shown to be a threat for quality of hospital care. International studies highlighted a lack of adequate noticing, reporting, and bridging of a language barrier. However, studies on the link between language proficiency and patient safety are scarce, especially in Europe. The present study investigates patient safety risks due to language barriers during hospitalization, and the way language barriers are detected, reported, and bridged in Dutch hospital care. Methods We combined quantitative and qualitative methods in a sample of 576 ethnic minority patients who were hospitalized on 30 wards within four urban hospitals. The nursing and medical records of 17 hospital admissions of patients with language barriers were qualitatively analyzed, and complemented by 12 in-depth interviews with care providers and patients and/or their relatives to identify patient safety risks during hospitalization. The medical records of all 576 patients were screened for language barrier reports. The results were compared to patients' self-reported Dutch language proficiency. The policies of wards regarding bridging language barriers were compared with the reported use of interpreters in the medical records. Results Situations in hospital care where a language barrier threatened patient safety included daily nursing tasks (i.e. medication administration, pain management, fluid balance management) and patient–physician interaction concerning diagnosis, risk communication and acute situations. In 30% of the patients that reported a low Dutch proficiency, no language barrier was documented in the patient record. Relatives of patients often functioned as interpreter for them and professional interpreters were hardly used. Discussion The present study showed a wide variety of risky situations in hospital care for patients with language barriers. These risks can be reduced by adequately bridging the language barrier, which, in the first place, demands adequate detecting and reporting of a language barrier. This is currently not sufficiently done in most Dutch hospitals. Moreover, new solutions to bridge language barriers are needed for situations such as routine safety checks performed by nurses, in which a professional or even informal interpreter is not feasible.

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.)

Family Group Conferencing (FGC) is a decision-making model where clients with their social network formulate their own plan. There is little experience with FGC in mental health care. We studied the outcomes of 41 conferences in a public mental health setting in the north of the Netherlands. We interviewed 312 respondents out of a total of 473 conference participants. In 33 cases, it was possible to obtain scores from 245 respondents on scales ranging from 0 to 10 about the situation prior and after the conference on three outcome measures, namely the quality of: (1) social support, (2) resilience and (3) living conditions. In the 33 cases, t-tests and multilevel analyses indicate on all of the three outcomes measures significant positive changes after the conferences. On average, the scores on the quality of social support (5.04–6.73), resilience (4.09–6.32) and the living conditions (3.73–6.64) had been increased since the conferences were organised. The results are modest but remarkable. That the impac...

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.

Nearly 5% of new-borns in the Netherlands are now born following Medically Assisted Conception (MAC), a steadily increasing number. Our qualitative study explored the subjective impact of subfertility and fertility treatment for parents who successfully achieve pregnancy following MAC and make health professionals more aware of the psychological needs of those clients. The study was based on the constructive/interpretative paradigm using a constant comparison/grounded theory design. Two men and nine women in the Netherlands who conceived as a result of MAC were interviewed in 2011. Our findings show that MAC-parents were exposed to a range of emotions such as disappointment, hope and uncertainty during the subfertile period, and these feelings were even felt after successful fertility treatment. The relationship and social support from friends and others in the same position were very important. Regarding the relationship with the partner during the subfertile period, the main thing the couple have to do is to keep talking with one another. Although they did not always agree on all issues, it was found that maintaining the communication strengthened the links between them by the end of the process. We concluded that the feelings and emotions during fertility treatment play a big role during the subfertile period and remain important during pregnancy and even after childbirth. Subfertile clients want maternity care providers to ask those who successfully achieve pregnancy following MAC about their experiences during fertility treatment, check that they still are receiving adequate social support, and involve the partner in prenatal checks.

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.

Background: Orbital cysts are rare developmental anomalies that can occur in microphthalmic and anophthalmic patients. Such cysts can promote orbital growth and subsequently markedly increase the size of the orbit, which is commonly underdeveloped in these patients. Cyst removal is therefore generally dissuaded (at least) in the first 5 years.Clinical case: A 6-year-old boy with a microphthalmos and a cyst developed protrusion of his prosthetic eye and a swelling of the lower eyelid. MRI showed a large cyst causing distortion of the right orbit. Due to the expansive orbital growth and subsequent misfitting of the prosthesis, cystectomy and orbital floor reconstruction was performed using 3D technology.Conclusion: 3D imaging and printing enables exact delineation of orbital cysts and the adjacent bony structures. Furthermore it offers the possibility to plan an individual surgical approach and to design and fabricate a custom fit orbital floor implant.

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

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.