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INTRODUCTION: Symptoms of cancer-related fatigue (CRF) can have a significant impact on patients' quality of life and treatment adherence. We aimed to investigate the relationship between CRF and multiple psychosocial and somatic indicators within a large mixed cancer sample. METHODS: In this cross-sectional study, N = 1787 outpatients with cancer were assessed for CRF, pain, anxiety, and depression using validated screening instruments. We further obtained clinical parameters (Hb, CRP, creatinine, leukocytes, ASAT, and ALAT), sociodemographic data (age, gender, income, education level, marital status, parenthood, and living area), and lifestyle factors. Multivariate linear regression models were applied to estimate the impact of each indicator on CRF. RESULTS: Overall, 90.6% of patients experienced some CRF, with 14.8% experiencing severe CRF. No gender difference was found in the prevalence of CRF. Patients with higher levels of pain, depressive symptoms, and lower Hb levels had significantly higher levels of CRF (ps <0.001). Lower levels of CRF were observed in patients who had children (p = 0.03), had less education (p < 0.001), and were physically active for more than 2 h per week before their oncological diagnosis (p = 0.014). The latter was only a significant indicator in the male subsample. CONCLUSION: The present results demonstrate a high prevalence of CRF and highlight that not only somatic and psychosocial factors, but also lifestyle factors prior to diagnosis appear to be associated with the etiology and persistence of CRF. To effectively treat CRF, a biopsychosocial, personalized approach is recommended.
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Depresión , Fatiga , Neoplasias , Calidad de Vida , Humanos , Masculino , Femenino , Neoplasias/complicaciones , Neoplasias/psicología , Neoplasias/epidemiología , Fatiga/epidemiología , Fatiga/etiología , Fatiga/psicología , Persona de Mediana Edad , Estudios Transversales , Prevalencia , Anciano , Depresión/epidemiología , Depresión/etiología , Adulto , Ansiedad/epidemiologíaRESUMEN
BACKGROUND: The effectiveness of cloth face masks to prevent viral spread has not yet been conclusively established. In this meta-analysis, we evaluate their effectiveness in comparison to standard medical/surgical and N95-typed masks against viral spread. METHODS: We identified literature through a systematic search in three databases and meta-analytically synthesized relevant studies by means of random-effects as well as multilevel modelling. RESULTS: Twelve studies comprising k = 28 effect sizes (N = 338) were included. Medical/surgical and N95-typed masks outperformed cloth masks, yielding a large effect (g = 1.40). This effect remained robust when data were grouped according to comparisons with medical/surgical masks (g = 1.25) and N95-typed masks (g = 1.29). However, effects were differentiated according to mask fit, indicating reversals of signs when cloth mask effects were compared with ill-fitting medical/surgical and N95-typed masks (gs = -12.50 and - 10.90, respectively). CONCLUSIONS: Cloth face masks were found to have significantly poorer filtering performance than medical/surgical masks and N95 masks, but only if non-cloth masks were properly fitted. Our results illustrate the necessity of using well-fitting medical/surgical or N95-typed masks to prevent viral spread, although some allowance should be made in circumstances where higher compliance with cloth mask mandates are expected.
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Máscaras , Textiles , HumanosRESUMEN
Introduction: Parenteral nutrition (PN) is widely used in palliative care (PC), but there is limited evidence to support its use at the end of life (EOL). This aim of this was to investigate the relationship between routine laboratory parameters and survival in patients receiving PN, and to develop a decision tree model to support clinicians decide whether to start or forgo PN. Methods: The laboratory parameters of 113 patients with advanced diseases who were admitted to a specialized palliative care unit (PCU) were analyzed at two points in time: T0 = before PN, T1 = two weeks after initiation of PN. Univariate Mann-Whitney U-tests and multivariate linear regression models, as well as a decision tree analysis were computed; all in relation to survival time. Results: The final regression model was significant with p = 0.001 (adjusted R2 = 0.15) and included two predictors for survival time after PN initiation: the CRP/albumin ratio and urea at T1 (ps = 0.019). Decision tree analysis revealed three important predictors for classification of survival time after PN initiation: CRP, urea, and LDH (all at T0). Discussion: The decision tree model may help to identify patients likely to benefit from PN, thus supporting the clinical decision whether or not to start PN.
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BACKGROUND: Survival in cancer patients is associated with a multitude of biological, social, and psychological factors. Although it is well established that all these factors add to overall mortality, it is not well understood how the predictive power of these parameters changes in a comprehensive model and over time. METHODS: Patients who attended the authors' outpatient clinic were invited to participate. The authors followed 5180 mixed cancer patients (51.1% female; mean age, 59.1 years [SD = 13.8]) for up to 16 years and analyzed biological (age, sex, cancer site, anemia), psychological (anxiety, depression), and social variables (marital status, education, employment status) potentially predicting overall survival in a Cox proportional hazards model. RESULTS: The median survival time for the entire sample was 4.3 years (95% confidence interval, 4.0-4.7). The overall survival probabilities for 1 and 10 years were 76.8% and 38.0%, respectively. Following an empirical approach, the authors split the time interval into five periods: acute, subacute, short-term, medium-term, and long-term. A complex pattern of variables predicted overall survival differently in the five periods. Biological parameters were important throughout most of the time, social parameters were either time-independent predictors or tended to be more important in the longer term. Of the psychological parameters, only depression was a significant predictor and lost its predictive power in the long-term. CONCLUSIONS: The findings of this study allow the development of comprehensive patient-specific models of risk and resilience factors addressing biopsychosocial needs of cancer patients, paving the way for a personalized treatment plan that goes beyond biomedical cancer care.
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Introduction: Good mental health is an indispensable aspect of good general health and different definitions of good mental health have been developed for the general population. However, it is not clear how these definitions can be applied to people with intellectual disabilities (ID), as they may have difficulties in many facets encompassed in existing definitions. Yet, people with ID can be mentally healthy or mentally ill just as people without ID. Objective: The aim of this systematic review is to summarize existing concepts, definitions, and measurement approaches of good mental health and wellbeing for people with ID. Methods: A comprehensive, systematic literature review will be conducted in 11 databases, including ASSIA, CINAHL, Cochrane Library, ERIC, MedRxiv, OSF preprints, ProQuest Dissertations & Theses Global, PsycINFO, PubMed, Scopus, and Web of Science. By including preprints and theses servers in the search strategy, we will also consider grey and unpublished literature. The quality of included studies will be rated using standardized checklists. All steps of the literature search, data extraction, and quality rating will be performed independently by two trained researchers. Disagreements will be resolved through discussion between these researchers and, if required, by consulting a third team member. In a narrative synthesis, existing approaches to good mental health and wellbeing for people with ID will be systematically described and linked to current research in mental health for people with and without ID. Discussion: The findings of this study will provide researchers and practitioners with an evidence-based overview of current approaches to good mental health and wellbeing of people with ID. We will explore and discuss the individual facets of the definitions, concepts, and measurement approaches and identify possible gaps which need to be addressed. This will strengthen future research on this topic and focus research activities on important and unresolved themes that need to be targeted to promote health equity for people with ID.
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BACKGROUND: Palliative care (PC) skills are important when caring for patients with advanced illness in a broad range of settings. Students need to be trained in communication and empathy, both representing essential PC skills. Therefore, creative approaches could promote the understanding of relevant PC skills. METHODS: In an online lecture about graphic medicine, different medical comics (MC) were used to introduce the field of graphic medicine and to illustrate relevant skills in PC. After the lecture, an online survey was conducted. The survey consisted of each respondent`s sociodemographic profile and a questionnaire on multiple aspects related to the field of MC. Spearman correlation coefficients and Cohen's effect sizes were used for statistical analysis. RESULTS: The survey respondents comprised 668 students, 337 female, 326 male and 5 diverse. The results showed that the students had never (27.2%) or had very rarely (31.9%) been involved in with the field of MC. The largest number would rate their interest as somewhat or very interested (58.8%). When considering the use of MC to understand different perspectives, the students mainly rated them as useful (54.6%) or very useful (23.4%). Women had a more positive attitude towards MC than men (P<0.001). Students who placed more importance on PC skills were more likely to recommend the use of MC in general medical education (r=0.11, P=0.005). The majority of the students (58.8%) moderately or strongly agreed on the use of MC as a teaching method in PC. CONCLUSIONS: After a single lecture on graphic medicine, the students were positive about using MC for teaching PC skills. Since the lecture was short and the majority of the medical students stated that they had not been previously exposed to the field of MC, this study demonstrates that it is promising to further use and evaluate a set of visual and narrative illustrations as a teaching method in PC.
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Educación de Pregrado en Medicina , Educación Médica , Estudiantes de Medicina , Femenino , Humanos , Masculino , Cuidados Paliativos , Educación de Pregrado en Medicina/métodos , Estudios Transversales , Educación Médica/métodosRESUMEN
Contrary to the common notion that personality and intelligence are unrelated constructs, numerous correlational studies have demonstrated substantial associations between the two domains. Moreover, samples of intellectually gifted individuals have been found to differ from the general population in specific aspects of their personalities. However, most studies so far have relied on the Five-Factor Model of Personality (FFM), while none have investigated this phenomenon using the HEXACO personality framework. We recruited 617 adult members of the international high-IQ society MENSA and compared them to 3 reference samples (combined N = 112,637) regarding their personalities as measured by the HEXACO-60 personality inventory. We found that gifted persons scored higher in Honesty-Humility and Conscientiousness but lower in Emotionality compared to reference samples. Interestingly, gifted individuals scored only slightly higher in Openness to Experience, and no consistent differences emerged for Agreeableness. We demonstrate that some known personality differences between gifted and non-gifted persons translate from the FFM to the HEXACO model, while others do not. Our results indicate that within the HEXACO factor structure differences in sociability are more pronounced, while intellect-related differences are comparatively weak.
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Background/Objective: The aim of the present study was to compare competing psychometric models and analyze measurement invariance of the Hospital Anxiety and Depression Scale (HADS) in cancer outpatients.Method: The sample included 3,260 cancer outpatients. Latent structure of the HADS was analyzed using confirmatory factor analysis (CFA) with robust maximum likelihood estimation (MLR). Measurement invariance was tested for age, time of response, gender, and cancer type by comparing nested multigroup CFA models with parameter restrictions.Results: Except for the one-factor solutions, all models showed acceptable model fit and measurement invariance. The model with the best fit was the originally proposed two-factor model with exclusion of two items. The one-factor solutions showed inacceptable model fit and were not invariant for age and gender.Conclusions: The HADS has a robust two-factor structure in cancer outpatients. We recommend excluding item 7 and 10 when screening for anxiety and depression. (AU)
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Humanos , Adulto Joven , Adulto , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Ansiedad , Depresión , Neoplasias , Encuestas y CuestionariosRESUMEN
Background/Objective: The aim of the present study was to compare competing psychometric models and analyze measurement invariance of the Hospital Anxiety and Depression Scale (HADS) in cancer outpatients. Method: The sample included 3,260 cancer outpatients. Latent structure of the HADS was analyzed using confirmatory factor analysis (CFA) with robust maximum likelihood estimation (MLR). Measurement invariance was tested for age, time of response, gender, and cancer type by comparing nested multigroup CFA models with parameter restrictions. Results: Except for the one-factor solutions, all models showed acceptable model fit and measurement invariance. The model with the best fit was the originally proposed two-factor model with exclusion of two items. The one-factor solutions showed inacceptable model fit and were not invariant for age and gender. Conclusions: The HADS has a robust two-factor structure in cancer outpatients. We recommend excluding item 7 and 10 when screening for anxiety and depression.
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We examined the perception of palliative care nurses regarding challenges, coping strategies, resources, and needs when working in a university hospital in Austria. A qualitative descriptive design was applied, using semistructured interviews with 8 female and 2 male nurses. All interviews were recorded as digital audio and transcribed verbatim. We used thematic analysis and MAXQDA. In our analysis, 6 themes emerged: Four themes related to challenges: ( a ) lack of a supporting structural framework, ( b ) conflict in interdisciplinary work, ( c ) conflict with caregivers, and ( d ) dealing with death in a highly specialized university environment. One theme related to ( e ) individual solutions and coping strategies, and 1 theme comprised ( f ) needs and suggestions for improvements. Taking care of the family of a dying person, handling threatening situation, and working with inexperienced physicians were among the most important challenges reported by nurses. A supportive team, professional counseling, and training related to communication skills and to culturally specific needs of families are perceived to be necessary to provide high-quality palliative care. Addressing the needs of nurses can substantially improve their working condition and has an impact not only on the nurses themselves but also on the quality of patient care.
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Enfermería de Cuidados Paliativos al Final de la Vida , Adaptación Psicológica , Femenino , Hospitales , Humanos , Masculino , Cuidados Paliativos/psicología , Investigación CualitativaRESUMEN
OBJECTIVE: We aimed to investigate whether (1) psychological and social indicators influence survival in patients diagnosed with cancer or haematologic malignancies when important biological aspects are controlled for, (2) psychological, social and biological indicators can be utilised to design one collated index for survival, usable in clinical practice to identify patients at risk of shorter survival and to improve personalised healthcare provision. METHODS: In this cross-sectional study, 2263 patients with cancer or haematologic malignancies participated. We analysed 15 biological, psychological and social indicators as risk factors for survival with a Cox proportional hazards model. Indicators significantly associated with survival were combined to compute models for the identification of patient groups with different risks of death. The training sample contained 1122 patients. Validation samples included the remaining 1141 patients, the total sample, as well as groups with different cancer entities. RESULTS: Five indicators were found to significantly impact survival: Cancer site (HR: 3.56), metastatic disease (HR: 1.88), symptoms of depression (HR: 1.34), female sex (HR: 0.73) and anaemia (HR: 0.48). Combining these indicators to a model, we developed the Cancer Survival Index, identifying three distinct groups of patients with estimated survival times of 47.2 months, 141 months and 198.2 months (p < 0.001). Post hoc analysis of the influence of depression on survival showed a mediating effect of the following four factors, related to both depression and survival: previous psychiatric conditions, employment status, metastatic disease and haemoglobin levels. CONCLUSIONS: Psychosocial and biological factors impact survival in various malignancies and can be utilised jointly to compute an index for estimating the survival of each patient individually-the Cancer Survival Index.
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Factores Biológicos , Neoplasias Hematológicas , Estudios Transversales , Femenino , Hemoglobinas , Humanos , Pronóstico , Modelos de Riesgos Proporcionales , Estudios RetrospectivosRESUMEN
Patients with low socioeconomic status (SES) are among the most underserved groups of people regarding cancer care. Analyzing the impact of the coronavirus-induced disease 2019 (COVID-19) pandemic on health care disparities and calling attention to inequalities in cancer care is crucial to justify and initiate adequate countermeasures. We aimed to determine whether the COVID-19 pandemic aggravated health care disparities of cancer outpatients related to their SES and analyzed patient data of the largest university center providing services for patients with hematologic and oncologic disorders in Austria from 2018 to 2021. SES was assessed using three indicators: monthly net household income, level of education and occupational prestige. In total, 1217 cancer outpatients (51.1% female) with a mean age of 59.4 years (SD = 14.2) participated. In the first year of the pandemic, the relative proportion of individuals with low income, low education level and low occupational prestige seeking cancer care at our outpatient center decreased significantly (P ≤ .015). The strongest indicator was income, with a consistent effect throughout the first pandemic year. Countermeasures and specific interventions to support cancer patients with low SES in their access to health care should be initiated and prioritized.
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COVID-19 , Neoplasias , COVID-19/epidemiología , Femenino , Humanos , Renta , Masculino , Persona de Mediana Edad , Neoplasias/epidemiología , Neoplasias/terapia , Pacientes Ambulatorios , Pandemias , Clase Social , Factores SocioeconómicosRESUMEN
BACKGROUND: Dementia in people with intellectual disability (ID) is frequent but hard to recognise. Evidence-based recommendations for suitable instruments are lacking. AIMS: The present study set out to evaluate informant-based dementia assessment instruments and to provide evidence-based recommendations for instruments most suitable in clinical practice and research. METHOD AND PROCEDURES: A systematic review was conducted across ten international electronic databases. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines, including a risk of bias assessment, was applied to extract information and to evaluate measurement properties and the quality of available evidence. OUTCOMES AND RESULTS: In total, 42 studies evaluating 18 informant-based assessment instruments were analysed. For screening purposes, we recommend the Behavioral and Psychological Symptoms of Dementia in Down Syndrome Scale (BPSD-DS), the Cognitive Scale for Down Syndrome (CS-DS), and the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID). For a more thorough dementia assessment, we recommend the Cambridge Examination for Mental Disorders of Older People with Down's Syndrome and Others with Intellectual Disabilities (CAMDEX-DS). CONCLUSIONS AND IMPLICATIONS: Our study informs clinicians and researchers about adequate, well-evaluated dementia assessment instruments for people with ID, and highlights the need for high quality studies, especially regarding content validity.
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Demencia , Síndrome de Down , Discapacidad Intelectual , Anciano , Sesgo , Demencia/diagnóstico , Síndrome de Down/diagnóstico , Humanos , Discapacidad Intelectual/diagnóstico , Discapacidad Intelectual/epidemiología , Tamizaje MasivoRESUMEN
BACKGROUND: During the initial phase of the global COVID-19 outbreak, most countries responded with non-pharmaceutical interventions (NPIs). In this study we investigate the general effectiveness of these NPIs, how long different NPIs need to be in place to take effect, and how long they should be in place for their maximum effect to unfold. METHODS: We used global data and a non-parametric machine learning model to estimate the effects of NPIs in relation to how long they have been in place. We applied a random forest model and used accumulated local effect (ALE) plots to derive estimates of the effectiveness of single NPIs in relation to their implementation date. In addition, we used bootstrap samples to investigate the variability in these ALE plots. RESULTS: Our results show that closure and regulation of schools was the most important NPI, associated with a pronounced effect about 10 days after implementation. Restrictions of mass gatherings and restrictions and regulations of businesses were found to have a more gradual effect, and social distancing was associated with a delayed effect starting about 18 days after implementation. CONCLUSIONS: Our results can inform political decisions regarding the choice of NPIs and how long they need to be in place to take effect.
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COVID-19 , Comercio , Humanos , Distanciamiento Físico , SARS-CoV-2 , Instituciones AcadémicasRESUMEN
OBJECTIVE: Pain depicts a severe physical symptom but its relationship to mental health problems is not well studied in cancer patients. The aim of this study was to investigate the prevalence of pain and its correlation with symptoms of post-traumatic stress disorder (PTSD), depression, anxiety and psychological distress in a large sample of cancer patients. METHODS: From 2010 to 2019, cancer patients who received outpatient treatment at the Medical University of Vienna were assessed with the Post-Traumatic Symptom Scale (PTSS-10) and the Hospital Anxiety and Depression Scales. A visual analogue scale was used to assess pain perception. For statistical analysis, linear regression models were applied to log-transformed data. RESULTS: Of the 846 cancer patients included in the study, 63.5% experienced pain (mild 43.5%, moderate 13.6%, severe 6.4%). About a third (31.2%) of the total sample presented with significant PTSD symptoms. Significant symptoms of depression, anxiety and distress were present in 13.9%, 15.1% and 25.3%, respectively. Women more often reported symptoms of PTSD, anxiety and distress. Pain scores were significantly related to symptoms of PTSD, depression and psychological distress (all with p < .001), but not to anxiety. CONCLUSIONS: Results show a high prevalence of experienced pain and indicate a clear association of elevated pain levels with psychiatric symptoms in oncological patients in a large Austrian sample. In order to decrease experienced pain and to enable better treatment of mental health problems in cancer patients, diagnostic procedures and interventions based on a biopsychosocial model need to be intensified.
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Neoplasias , Trastornos por Estrés Postraumático , Ansiedad/epidemiología , Estudios Transversales , Depresión/epidemiología , Femenino , Humanos , Neoplasias/epidemiología , Dolor/epidemiología , Prevalencia , Trastornos por Estrés Postraumático/epidemiologíaRESUMEN
INTRODUCTION: Persons with intellectual disability (ID) are at a higher risk of developing dementia than persons without ID, with an expected earlier onset. Assessment methods for the general population cannot be applied for persons with ID due to their pre-existing intellectual and functional impairments. As there is no agreed-upon measure to assess dementia in persons with ID, multiple instruments for this purpose have been developed and adapted in the past decades. This review aimed to identify all available informant-based instruments for the assessment of dementia in persons with ID, to evaluate and compare them according to their measurement properties, and to provide a recommendation for the most suitable instruments. Additionally, an overview of the amount and quality of research on these instruments will be provided. METHODS AND ANALYSIS: This review will be conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. We will adhere to the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines and use a set of characteristics developed for assessment instruments for persons with ID, the Characteristics of Assessment Instruments for Psychiatric Disorders in Persons with Intellectual Developmental Disorders. Two comprehensive, systematic literature searches will be applied in 10 international databases, including ASSIA, CINAHL, Cochrane Library, ERIC, MEDLINE, PsycINFO, Scopus, Web of Science, OpenGrey and ProQuest Dissertations and Theses Global. Risk of bias and quality assessment will be done according to COSMIN guidelines. We will apply the modified Grading of Recommendations, Assessment, Development and Evaluation approach to rate the overall quality of the available evidence. ETHICS AND DISSEMINATION: No ethics statement is needed for this study. The results will be submitted to a peer-reviewed journal and will be presented at international conferences.
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Demencia , Personas con Discapacidades Mentales , Sesgo , Demencia/diagnóstico , Humanos , Psicometría , Revisiones Sistemáticas como AsuntoRESUMEN
Article 8 of the UN Convention on the Rights of People with Disabilities requires governments around the globe to raise awareness on issues of disability in their societies, combatting stereotypes, prejudices and harmful practices. Little comparative data is available on lay people's social representations of intellectual disability and associated stigma, which could inform actions in line with the convention. The present study compared intellectual disability literacy and stigma among adults in the general population in the UK, Austria and Germany (N = 1046), and examined the effects of providing an intellectual disability label on these outcomes. Although participants came from highly developed European countries and prior contact with people with intellectual disabilities was common, the findings pointed to some striking differences between countries. Participants in Austria and Germany were much less likely than those in the UK to identify symptoms of a possible intellectual disability in an unlabelled vignette. They were also much more hostile towards social contact, a difference that was maintained when participants were informed of the intellectual disability label. Labelling showed controversial effects on stigma, both in its effects on social distance and on beliefs about suitable causes and interventions. Overall, the social acceptance of people with intellectual disabilities appears to be much less advanced in Austria and Germany than in the UK, and awareness of intellectual disability much lower, indicating a need for action at societal level.
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Actitud , Discapacidad Intelectual , Prejuicio , Estigma Social , Adolescente , Adulto , Austria , Femenino , Alemania , Humanos , Masculino , Distancia Psicológica , Reino Unido , Adulto JovenRESUMEN
Hand clasping (HC) and arm folding (AF) are bilateral limb postures which are subject to lateral preferences. Previous research suggested that left HC and left AF are "canonical" among European populations, i.e., generally preferred by right-handers. However, evidence on the associations of handedness with HC and AF to date is sparse and inconsistent, with studies mostly relying on relatively small sample sizes and arbitrary classifications of handedness. Utilizing latent class analysis for handedness classification, we present data from two large and independent middle-European samples, a discovery (n = 7,658) and replication (n = 5,062) sample. Our results indicate that right HC, not left HC, is overall preferred and that right-handedness is associated with right HC/left AF, and left- and mixed-handedness with left HC/right AF. Moreover, lateral preferences increased with age, and men had a higher preference of right HC, independent of handedness. We discuss our findings with regard to the generalizability of previous results.
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Brazo , Lateralidad Funcional , Mano , Postura , Adolescente , Adulto , Factores de Edad , Anciano , Anciano de 80 o más Años , Europa (Continente) , Femenino , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Factores Sexuales , Adulto JovenRESUMEN
AIM: This work describes an extensive systematic literature review on assessment instruments for dementia in persons with intellectual disability (ID). Existing instruments for the detection of dementia in persons with ID were collected and described systematically. This allows a direct and quick overview of available tools. Additionally, it contributes to the availability and usability of information about these instruments, thus enhancing further developments in this field. METHODS: A systematic literature search in five databases (CINAHL, PsycInfo, PubMed, Scopus, and Web of Science) was conducted. In order to include gray literature an invisible college approach was used. Relevant studies were identified and selected using defined inclusion and exclusion criteria. After the selection process all instruments were coded and classified. It was determined which concepts they assess, whether they were especially developed or adapted for persons with ID, and whether they were designed to assess dementia. The selection of relevant papers, as well as the coding of instruments was done independently by two researchers. RESULTS: In total, 97 records met the search criteria. Out of these, 114 different instruments were extracted. There were 79 instruments to be completed by the person with ID, and 35 informant-based instruments. Additionally, four test batteries were found. Some of these instruments were neither designed for the assessment of dementia, nor for persons with ID. CONCLUSIONS: There are a variety of different tools used for the assessment of dementia in ID. Nevertheless, an agreed-upon approach or instrument is missing. Establishing this would improve the quality of assessment in clinical practice, and benefit research. Data collected would become comparable and combinable, and allow research to have more informative value.