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BACKGROUND: The evaluation of care strategies at the end of life is particularly important due to the globally increasing proportion of very old people in need of care. The ICECAP-Supportive Care Measure is a self-complete questionnaire developed in the UK to evaluate palliative and supportive care by measuring patient's wellbeing in terms of 'capability'. It is a new measure with high potential for broad and international use. The aims of this study were the translation of the ICECAP-Supportive Care Measure from English into German and the content validation of this version. METHODS: A multi-step and team-based translation process based on the TRAPD model was performed. An expert survey was carried out to assess content validity. The expert panel (n = 20) consisted of four expert groups: representative seniors aged 65+, patients aged 65+ living in residential care, patients aged 65+ receiving end-of-life care, and professionals in end-of-life care. RESULTS: The German version of the ICECAP-Supportive Care Measure showed an excellent content validity on both item- and scale-level. In addition, a high agreement regarding the length of the single items and the total length of the questionnaire as well as the number of answer categories was reached. CONCLUSIONS: The German ICECAP-SCM is a valid tool to assess the quality of life at the end of life that is suitable for use in different settings. The questionnaire may be utilized in multinational clinical and economic evaluations of end-of-life care.
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Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Cuidados Paliativos , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
Background: People with dementia commonly have impaired social functioning and may not recognize this. This lack of awareness may result in worse outcomes for the person and their family carers. Objective: We aimed to characterize awareness of social functioning in dementia and describe its association with dementia severity. Methods: Multi-center cross-sectional study of people aged >65 years with dementia and family informants recruited from Germany, Japan and the United Kingdom. We used the Social Functioning in Dementia (SF-DEM) scale, assessing "spending time with other people" (domain 1), "communicating with other people" (domain 2), and "sensitivity to other people" (domain 3), and calculated lack of awareness into social functioning as the discrepancy between patient and informant ratings. Results: 108 participants with dementia (50.9% women), mean ageâ=â78.9 years, and mean MMSE scoreâ=â22.7. Patient and informant domain 1 ratings did not differ, but patient-rating was higher than carers for domain 2 (11.2 versus 10.1; pâ=â0.003) and domain 3 (9.7 versus 8.1; pâ<â0.001). Sixty people with dementia overestimated their overall social functioning, 30 underestimated, and 18 gave ratings congruent with their informant. Performance on the MMSE and its sub-domains was not associated with SF-DEM discrepancy score. Conclusions: We found that awareness of social functioning in dementia was a multidimensional concept, which varies according to subdomains of social functioning. Clinicians should help family members understand and adapt by explaining their relative with dementia's lack of awareness about aspects of their social functioning.
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Conscientização , Cuidadores , Demência , Humanos , Feminino , Masculino , Estudos Transversais , Idoso , Demência/psicologia , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Índice de Gravidade de Doença , Japão , Alemanha , Reino UnidoRESUMO
BACKGROUND: Activities of daily living (ADL) functioning are important in the diagnosis of neurocognitive disorders (NCD), yet no standardized and validated instrument exist based on international classification systems. OBJECTIVE: We aimed to psychometrically evaluate the differentiated assessment of ADL and instrumental ADL (IADL) impairments due to NCD according to DSM-5 criteria (Instrument für die Erfassung von Alltagsbeeinträchtigungen bei Neurokognitiven Störungen; A-NKS). METHODS: We conducted a pilot study involving 92 participant-informant dyads of participants with mild or major NCDs, cognitively healthy individuals, and an informant, to test acceptability, internal consistency, and convergent validity with similar measures. RESULTS: Both A-NKS versions demonstrated excellent internal consistency (α=â0.95 -0.99) and correlate with other instrumental ADL instruments (participant [informant]: Barthel Index: rsâ=â-0.26, p≤0.05 [rsâ=â-0.30, p≤0.01]; Amsterdam IADL: rsâ=â0.59, p≤0.01 [rsâ=â0.48, p≤0.01]; SIDAM ADL: rsâ=â0.46, p≤0.001 [rsâ=â0.47, p≤0.001]). Additionally, there are correlations with the scale autonomy of the WHOQOL-OLD (rs = -0.50, p≤0.001 [rsâ=â-0.37, p≤0.001]) and physical, as well as cognitive activities (rs = -0.39, p≤0.001 [rsâ=â-0.50, p≤0.001]). They were well-accepted by participants and informants. CONCLUSIONS: The A-NKS is an instrument with acceptable psychometric properties to assess ADL due to neurodegenerative decline in healthy individuals, and those with mild or major NCD. Further research is needed to confirm reliability and validity and investigate the factor structure.
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Atividades Cotidianas , Demência , Humanos , Atividades Cotidianas/psicologia , Psicometria , Reprodutibilidade dos Testes , Projetos Piloto , Demência/psicologia , Transtornos NeurocognitivosRESUMO
BACKGROUND: Dementia is one of the most common and most severe disorder in old age. In addition to cognitive decline and functional impairment, changes in social functioning occur in the course of dementia. Currently, there is no valid instrument in German language to assess social functioning in individuals with dementia. OBJECTIVE: We aim to adapt and psychometrically evaluate a German version of the Social Functioning in Dementia Scale (SF-DEM). METHODS: First, a multi-step and team-based translation process based on the TRAPD model was performed. Second, we interviewed dyads of individuals with mild dementia and caregivers to test the internal consistency, test-retest reliability, interrater reliability, construct validity, and acceptance of the German version of the SF-DEM. RESULTS: The internal consistency of the patient-rated (α=â0.72) and the caregiver-rated (α=â0.76) SF-DEM is at an acceptable level. The interrater reliability was excellent for both versions (patients: ICCâ=â0.98, CI [0.95-0.99]; caregiver: ICCâ=â0.95, CI [0.89-0.98]) and the test-retest reliability was moderate (patients: ICCâ=â0.57, CI [0.26-0.77]; caregiver: ICCâ=â0.58, CI [0.27-0.78]). Caregiver-rated SF-DEM correlated strong with LSNS-6 (rsâ=â0.60, pâ<â0.01), QoL-AD (marriage: rsâ=â0.61, pâ<â0.01; friends: rsâ=â0.51, pâ=â0.01). In addition, the SF-DEM was accepted by the participants. CONCLUSION: The German SF-DEM is a valid, reliable, and acceptable instrument to assess social functioning in individuals with dementia. Further research should address the psychometric properties in individuals with more severe dementia.
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Demência , Idioma , Demência/diagnóstico , Demência/psicologia , Humanos , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Interação Social , Inquéritos e QuestionáriosRESUMO
Purpose: Social isolation is considered a risk factor for dementia. However, less is known about social isolation and dementia with respect to competing risk of death, particularly in the oldest-old, who are at highest risk for social isolation, dementia and mortality. Therefore, we aimed to examine these associations in a sample of oldest-old individuals. Methods: Analyses were based on follow-up (FU) 5-9 of the longitudinal German study AgeCoDe/AgeQualiDe. Social isolation was assessed using the short form of the Lubben Social Network Scale (LSNS-6), with a score ≤ 12 indicating social isolation. Structured interviews were used to identify dementia cases. Competing risk analysis based on the Fine-Gray model was conducted to test the association between social isolation and incident dementia. Results: Excluding participants with prevalent dementia, n = 1,161 individuals were included. Their mean age was 86.6 (SD = 3.1) years and 67.0% were female. The prevalence of social isolation was 34.7% at FU 5, 9.7% developed dementia and 36.0% died during a mean FU time of 4.3 (SD = 0.4) years. Adjusting for covariates and cumulative mortality risk, social isolation was not significantly associated with incident dementia; neither in the total sample (sHR: 1.07, 95%CI 0.65-1.76, p = 0.80), nor if stratified by sex (men: sHR: 0.71, 95%CI 0.28-1.83, p = 0.48; women: sHR: 1.39, 95%CI 0.77-2.51, p = 0.27). Conclusion: In contrast to the findings of previous studies, we did not find an association between social isolation and incident dementia in the oldest-old. However, our analysis took into account the competing risk of death and the FU period was rather short. Future studies, especially with longer FU periods and more comprehensive assessment of qualitative social network characteristics (e.g., loneliness and satisfaction with social relationships) may be useful for clarification.
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BACKGROUND: Social functioning is an important parameter for the early detection and diagnosis of dementia, as well as the description of its course and the assessment of intervention effects. Therefore, valid and reliable instruments to measure social functioning in individuals with dementia are needed. OBJECTIVE: We aimed to provide an overview of such instruments including information on feasibility and psychometric properties. METHODS: The review is informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Relevant literature was identified using a pre-specified search string in the databases MEDLINE, PsycINFO, and Web of Science. Information on the characteristics, feasibility, and psychometric properties of the identified instruments were extracted, summarized, and discussed. RESULTS: Out of 5,307 articles, 8 were selected to be included in the study, describing a total of three instruments for measuring social functioning in individuals with dementia: the Nurses' Observation Scale for Geriatric Patients (NOSGER; dimension "social behavior"), the Socioemotional Dysfunction Scale (SDS), and the Social Functioning in Dementia Scale (SF-DEM). The validity of all the three instruments was overall acceptable. Reliability was high for the NOSGER scale "social behavior" and the SF-DEM. Information on the usability of the instruments tended to be scarce. CONCLUSION: There are a few valid and reliable instruments to assess social functioning in individuals with dementia. Further considerations could comprise their feasibility with regard to measuring changes in social functioning over time, in additional target groups, e.g., different types and stages of dementia, and adaptions to different languages and cultural backgrounds.
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Demência/diagnóstico , Demência/psicologia , Comportamento Social , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Psicometria , Reprodutibilidade dos Testes , Interação SocialRESUMO
OBJECTIVE: In the past 20 years, obesity has become a major health problem due to associated diseases like type 2 diabetes mellitus. The gastric inhibitory polypeptide receptor (GIPR) modulates body weight and glucose homeostasis and, therefore, represents an interesting candidate gene for obesity and the comorbidity impaired glucose homeostasis. Recently, a GIPR variation was found to be associated with impaired insulin response in humans. In this study, we screened the GIPR gene for mutations and examined the association between three single-nucleotide polymorphisms (SNPs; rs8111428, rs2302382, rs1800437) and childhood obesity, as well as impaired glucose homeostasis. METHODS: The coding region of the GIPR was screened for mutations by direct sequencing. We genotyped three known SNPs in 2280 healthy normal weight (1696) and obese (584) children and adolescents. Genotyping was performed using the SNaPshot protocol, the iplex, and matrix-assisted laser desorption ionization time-of-flight spectrometry technique. Obesity was defined by a body mass index SDS above 2; homeostatic model assessment was calculated. RESULTS: No evidence for an association was found between the SNPs and the obesity phenotype. Significant association was found between the minor allele C of the SNP rs1800437 and elevated homeostasis model of insulin resistance values (P=0.001). No further sequence variations in the GIPR were found to be associated with childhood obesity. CONCLUSION: Variations of the GIPR sequence are not associated with childhood obesity. This study points to a potential role for rs1800437 in glucose homeostasis. Further studies are necessary to confirm these results.
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Glicemia/genética , Intolerância à Glucose/genética , Resistência à Insulina/genética , Obesidade/genética , Receptores dos Hormônios Gastrointestinais/genética , Adolescente , Alelos , Peso Corporal/genética , Criança , Pré-Escolar , Feminino , Frequência do Gene , Estudos de Associação Genética , Genótipo , Alemanha , Homeostase/genética , Humanos , Masculino , Mutação , Fenótipo , Polimorfismo de Nucleotídeo ÚnicoRESUMO
BACKGROUND: Independent genome-wide association studies (GWAS) showed an obesogenic effect of two single nucleotide polymorphisms (SNP; rs12970134 and rs17782313) more than 150 kb downstream of the melanocortin 4 receptor gene (MC4R). It is unclear if the SNPs directly influence MC4R function or expression, or if the SNPs are on a haplotype that predisposes to obesity or includes functionally relevant genetic variation (synthetic association). As both exist, functionally relevant mutations and polymorphisms in the MC4R coding region and a robust association downstream of the gene, MC4R is an ideal model to explore synthetic association. METHODOLOGY/PRINCIPAL FINDINGS: We analyzed a genomic region (364.9 kb) encompassing the MC4R in GWAS data of 424 obesity trios (extremely obese child/adolescent and both parents). SNP rs12970134 showed the lowest p-value (p = 0.004; relative risk for the obesity effect allele: 1.37); conditional analyses on this SNP revealed that 7 of 78 analyzed SNPs provided independent signals (p≤0.05). These 8 SNPs were used to derive two-marker haplotypes. The three best (according to p-value) haplotype combinations were chosen for confirmation in 363 independent obesity trios. The confirmed obesity effect haplotype includes SNPs 3' and 5' of the MC4R. Including MC4R coding variants in a joint model had almost no impact on the effect size estimators expected under synthetic association. CONCLUSIONS/SIGNIFICANCE: A haplotype reaching from a region 5' of the MC4R to a region at least 150 kb from the 3' end of the gene showed a stronger association to obesity than single SNPs. Synthetic association analyses revealed that MC4R coding variants had almost no impact on the association signal. Carriers of the haplotype should be enriched for relevant mutations outside the MC4R coding region and could thus be used for re-sequencing approaches. Our data also underscore the problems underlying the identification of relevant mutations depicted by GWAS derived SNPs.