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2.
Am J Bioeth ; 20(2): 66-68, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31990252
3.
J Law Med ; 26(4): 896-921, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31682366

RESUMO

This article examines the evolution of advance care planning (ACP) in Singapore through the development of a less-formal, communications-based model - the Living Matters program - and its experience with local cultural and community responses to the process and its outcomes. Living Matters is, in practice, arguably a communitarian approach to ACP. The article then examines the challenges Living Matters poses to the overarching legal framework for ACP and suggests improvements to the proxy decision-making framework under the Mental Capacity Act (Singapore, cap 177A, 2010 rev ed), offering more flexible legal tools for ACP, and more regulatory support for the means to implement ACP outcomes effectively.


Assuntos
Planejamento Antecipado de Cuidados , Diretivas Antecipadas , Tomada de Decisões , Humanos , Procurador , Singapura
4.
Health Qual Life Outcomes ; 17(1): 161, 2019 Oct 26.
Artigo em Inglês | MEDLINE | ID: mdl-31655599

RESUMO

BACKGROUND: In previous work we concluded that DEMQOL and DEMQOL-Proxy can provide robust measurement of HRQL in dementia when scores are derived from analysis using the Rasch model. As the study sample included people with mild cognitive impairment, we undertook a replication study in the subsample with a diagnosis of dementia (PWD). PWD constitute the population for whom DEMQOL and DEMQOL-Proxy were originally developed. METHODS: We conducted a Rasch model analysis using the RUMM2030 software to re-evaluate DEMQOL (441 PWD) and DEMQOL-Proxy (342 family carers). We evaluated scale to sample targeting, ordering of item thresholds, item fit to the model, and differential item functioning (sex, age, severity, relationship), local independence, unidimensionality and reliability. RESULTS: For both DEMQOL and DEMQOL-Proxy, results were highly similar to the results in the original sample. We found the same problems with content and response options. CONCLUSIONS: DEMQOL and DEMQOL-Proxy can provide robust measurement of HRQL in people with a diagnosis of dementia when scores are derived from analysis using the Rasch model. As in the wider sample, the problems identified with content and response options require qualitative investigation in order to improve the scoring of DEMQOL and DEMQOL-Proxy.


Assuntos
Cuidadores/psicologia , Disfunção Cognitiva/fisiopatologia , Demência/psicologia , Qualidade de Vida , Inquéritos e Questionários/normas , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Procurador , Reprodutibilidade dos Testes
5.
Health Qual Life Outcomes ; 17(1): 152, 2019 Oct 11.
Artigo em Inglês | MEDLINE | ID: mdl-31604454

RESUMO

BACKGROUND: Little is known about health-related quality of life (HRQoL) in pediatric patients with cardiac rhythm devices. This study aims to compare self- and proxy-reported HRQoL in patients with pacemaker (PM) and implantable cardioverter-defibrillator (ICD) to that in sex- and age-matched healthy controls and to examine predictors for generic and disease-specific HRQoL. METHODS: The study included 72 PM and ICD patients (39% females) and 72 sex- and age-matched healthy controls from 3 to 18 years of age. HRQoL data was obtained by the PedsQL 4.0 Generic Core Scales and Pediatric Cardiac Quality of Life Inventory. Medical data was collected retrospectively from medical records. RESULTS: Patients had significantly lower self- and proxy-reported generic overall HRQoL and lower physical health than healthy controls, and ICD patients also had lower psychosocial health. On multivariate analyses, generic overall HRQoL and physical health was significantly predicted by current cardiac medication (ß = -.39, p = .02 for overall HRQoL, respectively ß = -.44, p = .006 for physical health). Disease-specific overall HRQoL was only marginally predicted by child age, device type, and the presence of a structural congenital heart disease (p < .10). CONCLUSIONS: This study shows that PM and ICD patients have lower HRQoL than healthy controls and that patients who need cardiac medication are seen by their parents at great risk for lower generic overall HRQoL. Our study also indicates a trend towards higher risk for low disease-specific HRQoL in younger patients, ICD patients, and patients with a structural congenital heart disease. Special attention should be given to these patients as they may benefit from a timely clinical evaluation in order to provide supportive interventions.


Assuntos
Desfibriladores Implantáveis/psicologia , Marca-Passo Artificial/psicologia , Qualidade de Vida , Adolescente , Estudos de Casos e Controles , Criança , Pré-Escolar , Estudos Transversais , Feminino , Cardiopatias Congênitas/psicologia , Humanos , Masculino , Procurador , Estudos Retrospectivos
6.
J Clin Ethics ; 30(3): 171-182, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31573959

RESUMO

Lainie Friedman Ross suggests that clinicians increase our efforts to meet children's most basic needs in several ways. These include prioritizing, to a greater extent, children's present and future feelings; placing greater decisional weight on other family members' needs; spotting earlier threats from surrogate decision makers so that we can better prevent these threatened harms; and finding ways to intervene earlier so that we can allow parental surrogate decision makers to remain in this role. I offer some practical ways in which Ross's ideas might be applied.


Assuntos
Tomada de Decisões , Família , Pais , Criança , Humanos , Procurador
7.
Prax Kinderpsychol Kinderpsychiatr ; 68(6): 525-539, 2019 Sep.
Artigo em Alemão | MEDLINE | ID: mdl-31480945

RESUMO

Quality of Life in Children with Down Syndrome from Parental Point of View Parents of 42 children with Down syndrome (mean age 9 years) report on their child's quality of life (physical, emotional and social domain). The KINDL-R was used as a proxy-report measure. Quality of life correlated negatively with behavioral symptoms (SDQ), but did not vary between children in mainstreamed or special schools. Regression analysis identified the child's behavioral symptoms and parental stress - assessed when the children had reached the age of five - as significant predictors of quality of life assessed four years later.


Assuntos
Síndrome de Down/psicologia , Pais/psicologia , Qualidade de Vida , Inquéritos e Questionários , Criança , Pré-Escolar , Humanos , Procurador , Estresse Psicológico
8.
Value Health ; 22(7): 822-828, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31277830

RESUMO

OBJECTIVES: To study the extent to which parents are able to serve as true proxies for their children with epilepsy using a more granular approach than has been found in any study to date. METHODS: Proxy resemblance to the child was based on discrepancy in z-centered child minus parent scores of matching quality-of-life (QOL) domains for 477 dyads. Latent class mixed models (LCMMs) were built, with child's age as the independent variable for epilepsy-specific and generic QOL. Data were obtained from the QUALITÉ Canadian cohort, which recruited children with epilepsy aged 8 to 14 years at baseline and their parents. RESULTS: Both epilepsy-specific and generic LCMMs produced latent classes representing proxies that were overly positive, overly negative, or in agreement relative to their children with posterior probabilities of 79% to 84%. The "agreement" classes had N = 411 and N = 349 in the epilepsy-specific and generic LCMMs, respectively. The epilepsy-specific LCMM had a small unique class of N = 5 with a posterior probability of 88% called "growing discrepancy." CONCLUSIONS: Most parents of children with epilepsy can serve as valid proxies for their children on QOL scales. Poorer parental adaptation is more related to overly negative proxies, whereas low peer support from the child's perspective is more related to overly positive proxies.


Assuntos
Comportamento do Adolescente , Comportamento Infantil , Epilepsia/psicologia , Pais/psicologia , Procurador/psicologia , Qualidade de Vida , Autorrelato , Adaptação Psicológica , Adolescente , Fatores Etários , Criança , Pré-Escolar , Efeitos Psicossociais da Doença , Epilepsia/diagnóstico , Epilepsia/terapia , Feminino , Humanos , Estudos Longitudinais , Masculino , Saúde Mental , Infuência dos Pares , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Apoio Social
9.
Trials ; 20(1): 408, 2019 Jul 09.
Artigo em Inglês | MEDLINE | ID: mdl-31288829

RESUMO

BACKGROUND: Critical illness increases the risk for poor mental health outcomes among both patients and their informal caregivers, especially their surrogate decision-makers. Surrogates who must make life-and-death medical decisions on behalf of incapacitated patients may experience additional distress. EMPOWER (Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience) is a novel cognitive-behavioral, acceptance-based intervention delivered in the intensive care unit (ICU) setting to surrogate decision-makers designed to improve both patients' quality of life and death and dying as well as surrogates' mental health. METHODS: Clinician stakeholder and surrogate participant feedback (n = 15), as well as results from an open trial (n = 10), will be used to refine the intervention, which will then be evaluated through a multisite randomized controlled trial (RCT) (n = 60) to examine clinical superiority to usual care. Feasibility, tolerability, and acceptability of the intervention will be evaluated through self-report assessments. Hierarchical linear modeling will be used to adjust for clustering within interventionists to determine the effect of EMPOWER on surrogate differences in the primary outcome, peritraumatic stress. Secondary outcomes will include symptoms of post-traumatic stress disorder, prolonged grief disorder, and experiential avoidance. Exploratory outcomes will include symptoms of anxiety, depression, and decision regret, all measured at 1 and 3 months from post-intervention assessment. Linear regression models will examine the effects of assignment to EMPOWER versus the enhanced usual care group on patient quality of life or quality of death and intensity of care the patient received during the indexed ICU stay assessed at the time of the post-intervention assessment. Participant exit interviews will be conducted at the 3-month assessment time point and will be analyzed using qualitative thematic data analysis methods. DISCUSSION: The EMPOWER study is unique in its application of evidence-based psychotherapy targeting peritraumatic stress to improve patient and caregiver outcomes in the setting of critical illness. The experimental intervention will be strengthened through the input of a variety of ICU stakeholders, including behavioral health clinicians, physicians, bereaved informal caregivers, and open trial participants. Results of the RCT will be submitted for publication in a peer-reviewed journal and serve as preliminary data for a larger, multisite RCT grant application. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03276559 . Retrospectively registered on 8 September 2017.


Assuntos
Cuidadores/psicologia , Comportamento de Escolha , Terapia Cognitivo-Comportamental , Cuidados Críticos , Emoções , Saúde Mental , Procurador/psicologia , Resiliência Psicológica , Estresse Psicológico/terapia , Consentimento do Representante Legal , Estudos de Equivalência como Asunto , Humanos , Unidades de Terapia Intensiva , Estudos Multicêntricos como Assunto , Cidade de Nova Iorque , Qualidade de Vida , Estresse Psicológico/etiologia , Estresse Psicológico/psicologia , Fatores de Tempo , Resultado do Tratamento
10.
Clin Rehabil ; 33(10): 1571-1585, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31169031

RESUMO

OBJECTIVE: To clarify the concept of best interests, setting out how they should be ascertained and used to make healthcare decisions for patients who lack the mental capacity to make decisions. CONTEXT: The legal framework is the Mental Capacity Act (MCA) 2005, which applies to England and Wales. THEORY: Unless there is a valid and applicable Advance Decision, an appointed decision-maker needs to decide for those without capacity. This may be someone appointed by the patient through a Lasting Power of Attorney, or a Deputy appointed by the court. Otherwise the decision-maker is usually the responsible clinician. Different approaches exist to surrogate decision-making cross-nationally. In England and Wales, decision-making is governed by the MCA 2005, which uses a person-centred, flexible best interests (substituted interests) approach. OBSERVATIONS: The MCA is often not followed in healthcare settings, despite widespread mandatory training. The possible reasons include its focus on single decisions, when multiple decisions are made daily, the potential time involved and lack of clarity about who is the responsible decision-maker. SOLUTION: One solution is to decide a strategic policy to cover more significant (usually health-related) decisions and to separate these from day-to-day relational decisions covering care and activities. Once persistent lack of capacity is confirmed, an early meeting should be arranged with family and friends, to start a process of sharing information about the patient's medical condition and their values, wishes, feelings and beliefs with a view to making timely treatment decisions in the patient's best interests.


Assuntos
Tomada de Decisões , Competência Mental , Procurador , Diretivas Antecipadas , Tomada de Decisão Clínica , Humanos , Relações Profissional-Família
12.
Qual Life Res ; 28(11): 3093-3105, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31243620

RESUMO

PURPOSE: This study aimed to assess psychometric properties of the Japanese version of the EQ-5D-Y (3 levels) with a focus on feasibility, reliability, and construct validity. METHODS: Respondents were recruited from the general populations of three cities in Japan. First, children and adolescents responded to the EQ-5D-Y and PedsQL by self-report. Parents were also asked to evaluate the health states of their children/adolescents using proxy versions of these questionnaires. Next, the EQ-5D-Y was mailed to their residence approximately 2 weeks later, and both children/adolescents and their parents responded to the questionnaire. Reliability was confirmed by self-report test-retest methods and a comparison of self-report responses with proxy responses. Spearman's correlation coefficients were calculated between responses to the EQ-5D-Y and both responses to and scores of the PedsQL in order to assess construct validity. RESULTS: A total of 654 children/adolescents from aged 8 to 15 (median age: 11) responded to the questionnaires at both the first- and second-stage surveys. Test-retest agreement was sufficiently high and was influenced by age. Proxy test-retest results revealed that parents' responses were more reliable compared to the self-report results. Some correlations (|r| > 0.3) between items of the EQ-5D-Y and PedsQL were found. Meanwhile, no correlations were found between proxy responses to the EQ-5D-Y and self-report responses to the PedsQL. CONCLUSIONS: The EQ-5D-Y demonstrates reliability and validity among children/adolescents and their parents in Japan. Construct validity of the EQ-5D-Y by self-report was confirmed through comparisons with the PedsQL. Proxy responses to the EQ-5D-Y were more reliable compared to the self-report results, but construct validity was not confirmed in the proxy version.


Assuntos
Psicometria/métodos , Qualidade de Vida/psicologia , Autorrelato/estatística & dados numéricos , Inquéritos e Questionários , Adolescente , Criança , Feminino , Humanos , Japão , Masculino , Pais , Procurador , Reprodutibilidade dos Testes , Traduções
13.
J Clin Ethics ; 30(2): 154-162, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31188792

RESUMO

Today's medical training environment exposes medical trainees to many aspects of what has been called "the hidden curriculum." In this article, we examine the relationship between two aspects of the hidden curriculum, the performance of emotional labor and the characterization of patients and proxies as "bad," by analyzing clinical ethics discussions with resident trainees at an academic medical center. We argue that clinicians' characterization of certain patients and proxies as "bad," when they are not, can take an unnecessary toll on trainees' emotions. We conclude with a discussion of how training in ethics may help uncover and examine these aspects of the hidden curriculum.


Assuntos
Currículo , Emoções , Pediatria , Procurador , Criança , Ética Médica , Humanos , Pediatria/ética
14.
Geriatr Gerontol Int ; 19(6): 547-551, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-30957960

RESUMO

AIM: The present study aimed to evaluate the validity of proxy informants' reports on Life Event Scale for the Elderly (LESE) by using psychological autopsy method among rural older adults in China. METHODS: A multistage stratified cluster sampling method was used to select research sites. Using a case-control psychological autopsy study, face-to-face interviews were carried out to collect information from 242 suicide cases and 242 living controls. We compared the intensity and number of life events to assess the validity and reliability of LESE with proxy data reported by different informants. Data from proxy respondents of the living controls were compared with data reported by the targets (gold standards). Intraclass correlation coefficients were computed to evaluate the consistency of informants. Spearman's correlation analysis was used to analyze the convergent validity and discriminate validity of the LESE. RESULTS: The number of life events between different informants showed higher intraclass correlation coefficients values than the intensity of life events, but the results of correlation analysis was similar. The LESE was positively correlated with depression, loneliness and hopelessness, and negatively correlated with quality of life, family function and social support both in suicide cases and living controls. CONCLUSIONS: The LESE has good convergent validity and discriminant validity. LESE is a valid instrument for measuring life events in psychological autopsy studies. We suggest using the number of life events to assess the validity and reliability with proxy data in a psychological autopsy study, which is more reliable than using the intensity of life events. Geriatr Gerontol Int 2019; 19: 547-551.


Assuntos
Avaliação Geriátrica/métodos , Procurador , Escalas de Graduação Psiquiátrica , Suicídio/psicologia , Idoso , Autopsia , Estudos de Casos e Controles , China , Depressão/psicologia , Feminino , Psiquiatria Geriátrica , Humanos , Entrevistas como Assunto , Acontecimentos que Mudam a Vida , Solidão/psicologia , Masculino , Psicometria , Qualidade de Vida/psicologia , População Rural , Apoio Social
15.
PLoS Negl Trop Dis ; 13(4): e0007298, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30986218

RESUMO

Only a few studies have investigated the potential of using geotagged social media data for predicting the patterns of spatio-temporal spread of vector-borne diseases. We herein demonstrated the role of human mobility in the intra-urban spread of dengue by weighting local incidence data with geo-tagged Twitter data as a proxy for human mobility across 45 neighborhoods in Yogyakarta city, Indonesia. To estimate the dengue virus importation pressure in each study neighborhood monthly, we developed an algorithm to estimate a dynamic mobility-weighted incidence index (MI), which quantifies the level of exposure to virus importation in any given neighborhood. Using a Bayesian spatio-temporal regression model, we estimated the coefficients and predictiveness of the MI index for lags up to 6 months. Specifically, we used a Poisson regression model with an unstructured spatial covariance matrix. We compared the predictability of the MI index to that of the dengue incidence rate over the preceding months in the same neighborhood (autocorrelation) and that of the mobility information alone. We based our estimates on a volume of 1·302·405 geotagged tweets (from 118·114 unique users) and monthly dengue incidence data for the 45 study neighborhoods in Yogyakarta city over the period from August 2016 to June 2018. The MI index, as a standalone variable, had the highest explanatory power for predicting dengue transmission risk in the study neighborhoods, with the greatest predictive ability at a 3-months lead time. The MI index was a better predictor of the dengue risk in a neighborhood than the recent transmission patterns in the same neighborhood, or just the mobility patterns between neighborhoods. Our results suggest that human mobility is an important driver of the spread of dengue within cities when combined with information on local circulation of the dengue virus. The geotagged Twitter data can provide important information on human mobility patterns to improve our understanding of the direction and the risk of spread of diseases, such as dengue. The proposed MI index together with traditional data sources can provide useful information for the development of more accurate and efficient early warning and response systems.


Assuntos
Dengue/epidemiologia , Transmissão de Doença Infecciosa , Métodos Epidemiológicos , Mídias Sociais , Topografia Médica , Viagem/estatística & dados numéricos , População Urbana , Dengue/transmissão , Humanos , Incidência , Indonésia/epidemiologia , Procurador , Análise Espaço-Temporal , Doença Relacionada a Viagens
16.
Geriatr Gerontol Int ; 19(6): 487-491, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-30983109

RESUMO

AIM: The DEMQOL is a self-report measure of subjective quality of life of people with dementia, and the DEMQOL-PROXY is a carer proxy version. The study aimed to develop Japanese versions of the DEMQOL and DEMQOL-PROXY, and test their reliability and validity. METHODS: Translation, reverse translation and equivalency evaluation by the original author were used to develop Japanese versions of the DEMQOL (DEMQOL-J) and DEMQOL-PROXY (DEMQOL-PROXY-J). Interviews were carried out with 90 pairs of people with dementia and their carers to assess their quality of life using the DEMQOL-J, DEMQOL-PROXY-J and other quality of life scales. Internal consistency was evaluated using Cronbach's alpha. Test-retest reliabilities were evaluated using intraclass correlation coefficients. Criterion validity was determined using Pearson's correlation coefficient. RESULTS: Data from 87 pairs who completed the interviews were analyzed. Cronbach's alphas for the DEMQOL-J and DEMQOL-PROXY-J were 0.930 and 0.927, respectively. For 27 pairs who were re-interviewed, the intraclass correlation coefficients for the DEMQOL-J and DEMQOL-PROXY-J were 0.942 (P < 0.001) and 0.942 (P < 0.001), respectively. Both the DEMQOL-J and DEMQOL-PROXY-J correlated significantly with other quality of life scales (the Quality of Life - Alzheimer's Disease instrument, the EuroQol-5D-3L and the World Health Organization Well-Being Index-5-J; P < 0.001). There was also a significant correlation between the DEMQOL-J and the DEMQOL-PROXY-J (r = 0.645, P ≤ 0.001). CONCLUSIONS: The DEMQOL-J and DEMQOL-PROXY-J are reliable and valid measures of dementia-specific quality of life. Geriatr Gerontol Int 2019; 19: 487-491.


Assuntos
Demência/psicologia , Avaliação Geriátrica/métodos , Procurador , Qualidade de Vida , Autorrelato , Idoso , Idoso de 80 Anos ou mais , Cuidadores , Feminino , Humanos , Japão , Masculino , Reprodutibilidade dos Testes , Tradução
17.
Trials ; 20(1): 233, 2019 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-31023383

RESUMO

BACKGROUND: Research involving adults who lack the capacity to provide informed consent can be challenging. In England and Wales there are legal provisions for consulting with others who know the person with impaired capacity. The role of the 'proxy' (or 'surrogate') is to advise researchers about the person's wishes and feelings or to provide consent on the person's behalf for a clinical trial of a medicine. Information about the study is usually provided to the proxy; however, little information is available to proxies about their role, or the appropriate legal and ethical basis for their decision, to help inform their decision-making. The aim of this study was to analyse the written information that is provided to consultees and legal representatives. METHODS: Studies including adults lacking capacity to consent which utilised consultees or legal representatives were identified using the UK Clinical Trials Gateway database. A representative sample (n = 30) were randomly selected. Information sheets and other study documents provided to proxies were obtained, and relevant content was extracted. Content analysis was conducted through four stages: decontextualisation of the unit of analysis, recontextualisation, categorisation, and compilation. The data were summarised narratively according to each theme and category. RESULTS: Considerable variation was found in the written information sheets provided to proxies. Most directed proxies to consider the wishes and feelings of the person who lacked capacity and to consult with others during the decision-making process. However, a small number of studies extended the scope of the proxy's role to consider the person's suitability or eligibility for the study. Particular discrepancies were found in information provided to those acting as consultees or legal representatives in a professional, as opposed to a personal, capacity. Incorrect uses of terminology were frequently found, and a small number of studies inaccurately interpreted the law. CONCLUSIONS: Despite undergoing ethical review, study documents lacked essential information, incorrectly used terminology, and conflated professionals' clinical and representation roles. Future recommendations include ensuring proxies are provided with adequate and accurate information which complies with the legal frameworks. Further research is needed to explore the information and decision-making needs of those acting as consultees and legal representatives.


Assuntos
Termos de Consentimento/legislação & jurisprudência , Disseminação de Informação/legislação & jurisprudência , Competência Mental/legislação & jurisprudência , Procurador/legislação & jurisprudência , Ensaios Clínicos Controlados Aleatórios como Assunto/legislação & jurisprudência , Projetos de Pesquisa/legislação & jurisprudência , Consentimento do Representante Legal/legislação & jurisprudência , Comportamento de Escolha , Definição da Elegibilidade/legislação & jurisprudência , Humanos , Reino Unido
18.
Soins ; 64(833): 44-45, 2019 Mar.
Artigo em Francês | MEDLINE | ID: mdl-30879631

RESUMO

The shared decision is the one that a patient takes with his doctor. But when he can no longer express his will, the decision is made by the doctor after a collegial procedure. In this procedure, advance directives are consulted, the testimony of the person of trust taken into account, failing that of relatives. Complemented by consultation within the care team, the procedure is a shared approach in terms of reflection and ethical responsibility.


Assuntos
Tomada de Decisão Clínica , Equipe de Assistência ao Paciente , Médicos/psicologia , Diretivas Antecipadas , Humanos , Procurador
19.
BMC Health Serv Res ; 19(1): 201, 2019 Mar 29.
Artigo em Inglês | MEDLINE | ID: mdl-30922307

RESUMO

BACKGROUND: Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for. We consider the key issues that need to be addressed when adapting an instrument designed to measure social care outcomes, the Adult Social Care Outcomes Tool (ASCOT), into a proxy-report tool. METHODS: Participants took part in either a focus group (35 paid carers in eight focus groups), or a one-to-one interview (eight unpaid carers). All participants were recruited via carer organisations and care providers. Transcripts, field notes and audio data collected during focus groups and interviews were analysed using a thematic framework approach. RESULTS: Participants agreed that any person acting as a proxy would need to be very familiar with the care recipient, as well as their needs and care provision. A number of provisions for proxy respondents were proposed to improve face validity and acceptability of completing a questionnaire by proxy, and to ensure that any potential bias is reduced in the design of the questionnaire. These included: providing two sets of response options for each proxy perspective (the proxy themselves and the proxy view of how they think the care recipient would respond); a comments box to help people explain why they have selected a given response option (especially where these indicate unmet need); and providing clear guidance for the proxy respondent on how they should complete the questionnaire. CONCLUSIONS: This study has shown some of the challenges involved in assessing outcomes by proxy and explored some potential ways these can be mitigated. The findings highlight the benefits of developing and testing proxy measures in a robust way to widen participation in social care research.


Assuntos
Cuidadores/psicologia , Procurador/psicologia , Adulto , Idoso , Cuidadores/economia , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Procurador/estatística & dados numéricos , Pesquisa Qualitativa , Apoio Social
20.
Cochrane Database Syst Rev ; 3: CD011121, 2019 03 04.
Artigo em Inglês | MEDLINE | ID: mdl-30828783

RESUMO

BACKGROUND: Dementia assessment often involves initial screening, using a brief tool, followed by more detailed assessment where required. The AD-8 is a short questionnaire, completed by a suitable 'informant' who knows the person well. AD-8 is designed to assess change in functional performance secondary to cognitive change. OBJECTIVES: To determine the diagnostic accuracy of the informant-based AD-8 questionnaire, in detection of all-cause (undifferentiated) dementia in adults. Where data were available, we described the following: the diagnostic accuracy of the AD-8 at various predefined threshold scores; the diagnostic accuracy of the AD-8 for each healthcare setting and the effects of heterogeneity on the reported diagnostic accuracy of the AD-8. SEARCH METHODS: We searched the following sources on 27 May 2014, with an update to 7 June 2018: ALOIS (Cochrane Dementia and Cognitive Improvement Group), MEDLINE (Ovid SP), Embase (Ovid SP), PsycINFO (Ovid SP), BIOSIS Previews (Thomson Reuters Web of Science), Web of Science Core Collection (includes Conference Proceedings Citation Index) (Thomson Reuters Web of Science), CINAHL (EBSCOhost) and LILACS (BIREME). We checked reference lists of relevant studies and reviews, used searches of known relevant studies in PubMed to track related articles, and contacted research groups conducting work on the AD-8 to try to find additional studies. We developed a sensitive search strategy and used standardised database subject headings as appropriate. Foreign language publications were translated. SELECTION CRITERIA: We selected those studies which included the AD-8 to assess for the presence of dementia and where dementia diagnosis was confirmed with clinical assessment. We only included those studies where the AD-8 was used as an informant assessment. We made no exclusions in relation to healthcare setting, language of AD-8 or the AD-8 score used to define a 'test positive' case. DATA COLLECTION AND ANALYSIS: We screened all titles generated by electronic database searches, and reviewed abstracts of potentially relevant studies. Two independent assessors checked full papers for eligibility and extracted data. We extracted data into two-by-two tables to allow calculation of accuracy metrics for individual studies. We then created summary estimates of sensitivity, specificity and likelihood ratios using the bivariate approach and plotting results in receiver operating characteristic (ROC) space. We determined quality assessment (risk of bias and applicability) using the QUADAS-2 tool. MAIN RESULTS: From 36 papers describing AD-8 test accuracy, we included 10 papers. We utilised data from nine papers with 4045 individuals, 1107 of whom (27%) had a clinical diagnosis of dementia. Pooled analysis of seven studies, using an AD-8 informant cut-off score of two, indicated that sensitivity was 0.92 (95% confidence interval (CI) 0.86 to 0.96); specificity was 0.64 (95% CI 0.39 to 0.82); the positive likelihood ratio was 2.53 (95% CI 1.38 to 4.64); and the negative likelihood ratio was 0.12 (95% CI 0.07 to 0.21). Pooled analysis of five studies, using an AD-8 informant cut-off score of three, indicated that sensitivity was 0.91 (95% CI 0.80 to 0.96); specificity was 0.76 (95% CI 0.57 to 0.89); the positive likelihood ratio was 3.86 (95% CI 2.03 to 7.34); and the negative likelihood ratio was 0.12 (95% CI 0.06 to 0.24).Four studies were conducted in community settings; four were in secondary care (one in the acute hospital); and one study was in primary care. The AD-8 has a higher relative sensitivity (1.11, 95% CI 1.02 to 1.21), but lower relative specificity (0.51, 95% CI 0.23 to 1.09) in secondary care compared to community care settings.There was heterogeneity across the included studies. Dementia prevalence rate varied from 12% to 90% of included participants. The tool was also used in various different languages. Among all the included studies there was evidence of risk of bias. Issues included the selection of participants, conduct of index test, and flow of assessment procedures. AUTHORS' CONCLUSIONS: The high sensitivity of the AD-8 suggests it can be used to identify adults who may benefit from further specialist assessment and diagnosis, but is not a diagnostic test in itself. This pattern of high sensitivity and lower specificity is often suited to a screening test. Test accuracy varies by setting, however data in primary care and acute hospital settings are limited. This review identified significant heterogeneity and risk of bias, which may affect the validity of its summary findings.


Assuntos
Demência/diagnóstico , Questionário de Saúde do Paciente , Procurador , Idoso , Humanos , Sensibilidade e Especificidade
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