11 research outputs found

    Family caregivers’ perspectives on their interaction and relationship with people living with dementia in a nursing home:A qualitative study

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    BACKGROUND: Social interactions are important for people living with dementia in a nursing home. However, not much is known about interactions and relationships between residents and family caregivers and related experiences of family caregivers. We aim to advance the knowledge on how family caregivers interact with people living with dementia in a nursing home and how they maintain or redesign a meaningful connection. METHODS: Qualitative research using interviews with family caregivers (n = 31) to explore perspectives on their interaction and relationship with the person living with dementia. Interviews were held during the reopening of nursing homes after the first COVID-19 lockdown in the Netherlands. In this situation, family caregivers became more aware of their interaction and relationship with the resident, which provided a unique opportunity to reflect on this. The interviews explored the interaction and relationship in a broad sense, not specifically for the COVID-19 situation. Thematic analysis was performed to analyze the data. RESULTS: We were able to identify three key themes reflecting the experiences of family caregivers: (1) changes in the interaction and relationship, (2) strategies to promote connection, and (3) appreciation of the interaction and relationship. From the viewpoint of family caregivers, the interaction and relationship are important for both the resident living with dementia and for themselves, and family caregivers have different strategies for establishing a meaningful connection. Nevertheless, some appear to experience difficulties with constructing such a connection with the resident. CONCLUSIONS: Our results provide a basis for supporting family caregivers in perceiving and establishing mutuality and reciprocity so that they can experience togetherness. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12877-022-02922-x

    Genome-wide meta-analysis associates HLA-DQA1/DRB1 and LPA and lifestyle factors with human longevity

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    Genomic analysis of longevity offers the potential to illuminate the biology of human aging. Here, using genome-wide association meta-analysis of 606,059 parents' survival, we discover two regions associated with longevity (HLA-DQA1/DRB1 and LPA). We also validate previous suggestions that APOE, CHRNA3/5, CDKN2A/B, SH2B3 and FOXO3A influence longevity. Next we show that giving up smoking, educational attainment, openness to new experience and high-density lipoprotein (HDL) cholesterol levels are most positively genetically correlated with lifespan while susceptibility to coronary artery disease (CAD), cigarettes smoked per day, lung cancer, insulin resistance and body fat are most negatively correlated. We suggest that the effect of education on lifespan is principally mediated through smoking while the effect of obesity appears to act via CAD. Using instrumental variables, we suggest that an increase of one body mass index unit reduces lifespan by 7 months while 1 year of education adds 11 months to expected lifespan

    EVALUATION OF OPERATIONS ON AN AIRPORT WITH A CIRCULAR RUNWAY

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    This paper presents an innovative concept for airport operations in the long-term future, based on a radically new airport design encompassing a circular circumventing runway. The Endless Runway project, mostly funded by the European Commission during the Framework Programme 7 (FP7), aims at evaluating the benefits and identifying the constraints associated to this kind of airport. The possibility to operate the airport whatever the wind direction and for every aircraft type, the optimization of air and ground aircraft trajectories through the use of the best runway section, as well as the compact airport footprint are part of the observed gains. Those must be balanced with the high runway construction cost, additional safety issues in gusty winds and the impossibility to extend the runway system if additional capacity is desired. A foreseen application could be a small airport dedicated to unmanned aircraft operations or a large hub airport with limited traffic mix and high reliability of operations

    Reliability of the Dutch Cleft Speech Evaluation Test and Conversion to the Proposed Universal Scale

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    The Dutch cleft speech evaluation test (DCSET) has been implemented by the speech-language pathologists nationwide in the Netherlands since 2003, but the inter- and intrarater reliability was unknown. Two speech-language pathologists experienced in evaluating cleft speech assessed audio recordings of 20 children with cleft speech using the DCSET, and reassessed the recordings 2 weeks later. Intra- and interrater reliability was calculated, but found to be unacceptable after the first phase of this study using audio recordings. Following consensus training and some modifications in the scoring scales, the study was repeated using video recordings of 20 different children with cleft speech. Results from the second phase of this study using standardized video recordings showed fair, moderate, and good reliability on different subsets of the DCSET. Intrarater reliability (Kappa 0.59-1.00) was greater than interrater reliability (Kappa 0.33-0.79). Interrater reliability agreement was good (Kappa 0.63-0.79) for consonant production errors and speech understandability and acceptability, moderate (Kappa 0.59) for the resonance of the nasal passage, and fair (Kappa 0.33-0.37) for the resonance of the mixed and denasal passages. Subsequently, an algorithm was made to convert the DCSET scales to universal scales for international comparison of cleft speech as suggested by Henningsson et al in 2008

    Reliability of the Dutch Cleft Speech Evaluation Test and Conversion to the Proposed Universal Scale

    No full text
    The Dutch cleft speech evaluation test (DCSET) has been implemented by the speech-language pathologists nationwide in the Netherlands since 2003, but the inter- and intrarater reliability was unknown. Two speech-language pathologists experienced in evaluating cleft speech assessed audio recordings of 20 children with cleft speech using the DCSET, and reassessed the recordings 2 weeks later. Intra- and interrater reliability was calculated, but found to be unacceptable after the first phase of this study using audio recordings. Following consensus training and some modifications in the scoring scales, the study was repeated using video recordings of 20 different children with cleft speech. Results from the second phase of this study using standardized video recordings showed fair, moderate, and good reliability on different subsets of the DCSET. Intrarater reliability (Kappa 0.59-1.00) was greater than interrater reliability (Kappa 0.33-0.79). Interrater reliability agreement was good (Kappa 0.63-0.79) for consonant production errors and speech understandability and acceptability, moderate (Kappa 0.59) for the resonance of the nasal passage, and fair (Kappa 0.33-0.37) for the resonance of the mixed and denasal passages. Subsequently, an algorithm was made to convert the DCSET scales to universal scales for international comparison of cleft speech as suggested by Henningsson et al in 2008

    Family caregivers’ perspectives on their interaction and relationship with people living with dementia in a nursing home: A qualitative study

    No full text
    Background Social interactions are important for people living with dementia in a nursing home. However, not much is known about interactions and relationships between residents and family caregivers and related experiences of family caregivers. We aim to advance the knowledge on how family caregivers interact with people living with dementia in a nursing home and how they maintain or redesign a meaningful connection. Methods Qualitative research using interviews with family caregivers (n = 31) to explore perspectives on their interaction and relationship with the person living with dementia. Interviews were held during the reopening of nursing homes after the first COVID-19 lockdown in the Netherlands. In this situation, family caregivers became more aware of their interaction and relationship with the resident, which provided a unique opportunity to reflect on this. The interviews explored the interaction and relationship in a broad sense, not specifically for the COVID-19 situation. Thematic analysis was performed to analyze the data. Results We were able to identify three key themes reflecting the experiences of family caregivers: (1) changes in the interaction and relationship, (2) strategies to promote connection, and (3) appreciation of the interaction and relationship. From the viewpoint of family caregivers, the interaction and relationship are important for both the resident living with dementia and for themselves, and family caregivers have different strategies for establishing a meaningful connection. Nevertheless, some appear to experience difficulties with constructing such a connection with the resident. Conclusions Our results provide a basis for supporting family caregivers in perceiving and establishing mutuality and reciprocity so that they can experience togetherness

    Using guideline-based clinical decision support in oncological multidisciplinary team meetings: A prospective, multicenter concordance study

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    Background: Multidisciplinary team meetings formulate guideline-based individual treatment plans based on patient and disease characteristics and motivate reasons for deviation. Clinical decision trees could support multidisciplinary teams to adhere more accurately to guidelines. Every clinical decision tree is tailored to a specific decision moment in a care pathway and is composed of patient and disease characteristics leading to a guideline recommendation. Objective: This study investigated (1) the concordance between multidisciplinary team and clinical decision tree recommendations and (2) the completeness of patient and disease characteristics available during multidisciplinary team meetings to apply clinical decision trees such that it results in a guideline recommendation. Methods: This prospective, multicenter, observational concordance study evaluated 17 selected clinical decision trees, based on the prevailing Dutch guidelines for breast, colorectal and prostate cancers. In cases with sufficient data, concordance between multidisciplinary team and clinical decision tree recommendations was classified as concordant, conditional concordant (multidisciplinary team specified a prerequisite for the recommendation) and non-concordant. Results: Fifty-nine multidisciplinary team meetings were attended in 8 different hospitals, and 355 cases were included. For 296 cases (83.4%), all patient data were available for providing an unconditional clinical decision tree recommendation. In 59 cases (16.6%), insufficient data were available resulting in provisional clinical decision tree recommendations. From the 296 successfully generated clinical decision tree recommendations, the multidisciplinary team recommendations were concordant in 249 (84.1%) cases, conditional concordant in 24 (8.1%) cases and non-concordant in 23 (7.8%) cases of which in 7 (2.4%) cases the reason for deviation from the clinical decision tree generated guideline recommendation was not motivated. Conclusion: The observed concordance of recommendations between multidisciplinary teams and clinical decision trees and data completeness during multidisciplinary team meetings in this study indicate a potential role for implementation of clinical decision trees to support multidisciplinary team decision-making

    Using guideline-based clinical decision support in oncological multidisciplinary team meetings: A prospective, multicenter concordance study

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    Background: Multidisciplinary team meetings formulate guideline-based individual treatment plans based on patient and disease characteristics and motivate reasons for deviation. Clinical decision trees could support multidisciplinary teams to adhere more accurately to guidelines. Every clinical decision tree is tailored to a specific decision moment in a care pathway and is composed of patient and disease characteristics leading to a guideline recommendation. Objective: This study investigated (1) the concordance between multidisciplinary team and clinical decision tree recommendations and (2) the completeness of patient and disease characteristics available during multidisciplinary team meetings to apply clinical decision trees such that it results in a guideline recommendation. Methods: This prospective, multicenter, observational concordance study evaluated 17 selected clinical decision trees, based on the prevailing Dutch guidelines for breast, colorectal and prostate cancers. In cases with sufficient data, concordance between multidisciplinary team and clinical decision tree recommendations was classified as concordant, conditional concordant (multidisciplinary team specified a prerequisite for the recommendation) and non-concordant. Results: Fifty-nine multidisciplinary team meetings were attended in 8 different hospitals, and 355 cases were included. For 296 cases (83.4%), all patient data were available for providing an unconditional clinical decision tree recommendation. In 59 cases (16.6%), insufficient data were available resulting in provisional clinical decision tree recommendations. From the 296 successfully generated clinical decision tree recommendations, the multidisciplinary team recommendations were concordant in 249 (84.1%) cases, conditional concordant in 24 (8.1%) cases and non-concordant in 23 (7.8%) cases of which in 7 (2.4%) cases the reason for deviation from the clinical decision tree generated guideline recommendation was not motivated. Conclusion: The observed concordance of recommendations between multidisciplinary teams and clinical decision trees and data completeness during multidisciplinary team meetings in this study indicate a potential role for implementation of clinical decision trees to support multidisciplinary team decision-making

    Cancer risks by sex and variant type in PTEN hamartoma tumor syndrome.

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    BACKGROUND: PTEN Hamartoma Tumor Syndrome (PHTS) is a rare syndrome with a broad phenotypic spectrum, including increased risks of breast (BC, 67%-78% at age 60 years), endometrial (EC, 19%-28%), and thyroid cancer (TC, 6%-38%). Current risks are likely overestimated due to ascertainment bias. We aimed to provide more accurate and personalized cancer risks. METHODS: This was a European, adult PHTS cohort study with data from medical files, registries, and/or questionnaires. Cancer risks and hazard ratios were assessed with Kaplan-Meier and Cox regression analyses, and standardized incidence ratios were calculated. Bias correction consisted of excluding cancer index cases and incident case analyses. RESULTS: A total of 455 patients were included, including 50.5% index cases, 372 with prospective follow-up (median 6 years, interquartile range = 3-10 years), and 159 of 281 females and 39 of 174 males with cancer. By age 60 years, PHTS-related cancer risk was higher in females (68.4% to 86.3%) than males (16.4% to 20.8%). Female BC risks ranged from 54.3% (95% confidence interval [CI] = 43.0% to 66.4%) to 75.8% (95% CI = 60.7% to 88.4%), with two- to threefold increased risks for PTEN truncating and approximately twofold for phosphatase domain variants. EC risks ranged from 6.4% (95% CI = 2.1% to 18.6%) to 22.1% (95% CI = 11.6% to 39.6%) and TC risks from 8.9% (95% CI = 5.1% to 15.3%) to 20.5% (95% CI = 11.3% to 35.4%). Colorectal cancer, renal cancer, and melanoma risks were each less than 10.0%. CONCLUSIONS: Females have a different BC risk depending on their PTEN germline variant. PHTS patients are predominantly at risk of BC (females), EC, and TC. This should be the main focus of surveillance. These lower, more unbiased and personalized risks provide guidance for optimized cancer risk management
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