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[PMID]:29267500
[Au] Autor:Vieira E; Maia HS; Monteiro CB; Carvalho LM; Tonon T; Vanz AP; Schwartz IVD; Ribeiro MG
[Ad] Endereço:Agência Nacional de Saúde Suplementar, Rio de Janeiro, RJ, Brasil.
[Ti] Título:Quality of life and adherence to treatment in early-treated Brazilian phenylketonuria pediatric patients.
[So] Source:Braz J Med Biol Res;51(2):e6709, 2017 Dec 11.
[Is] ISSN:1414-431X
[Cp] País de publicação:Brazil
[La] Idioma:eng
[Ab] Resumo:Early dietary treatment of phenylketonuria (PKU), an inborn error of phenylalanine (Phe) metabolism, results in normal cognitive development. Although health-related quality of life (HRQoL) of PKU patients has been reported as unaffected in high-income countries, there are scarce data concerning HRQoL and adherence to treatment of PKU children and adolescents from Brazil. The present study compared HRQoL scores in core dimensions of Brazilian early-treated PKU pediatric patients with those of a reference population, and explored possible relationships between adherence to treatment and HRQoL. Early-treated PKU pediatric patient HRQoL was evaluated by self- and parent-proxy reports of the Pediatric Quality of Life Inventory (PedsQL) core scales. Adherence to treatment was evaluated by median Phe levels and percentage of results within the therapeutic target range in two periods. Means for total and core scales scores of PedsQL self- and parent proxy-reports of PKU patients were significantly lower than their respective means for controls. Adequacy of median Phe concentrations and the mean percentage of values in the target range fell substantially from the first year of life to the last year of this study. There was no significant difference in mean total and core scale scores for self- and parent proxy-reports between patients with adequate and those with inadequate median Phe concentrations. The harmful consequences for intellectual capacity caused by poor adherence to dietary treatment could explain the observed decrease in all HRQoL scales, especially in school functioning. Healthcare system and financial difficulties may also have influenced negatively all HRQoL dimensions.
[Mh] Termos MeSH primário: Fenilcetonúrias/dietoterapia
Qualidade de Vida
Cooperação e Adesão ao Tratamento/estatística & dados numéricos
[Mh] Termos MeSH secundário: Adolescente
Fatores Etários
Análise de Variância
Brasil
Criança
Feminino
Seres Humanos
Testes de Inteligência
Modelos Lineares
Masculino
Pais
Fenilalanina/sangue
Fenilcetonúrias/psicologia
Procurador
Qualidade de Vida/psicologia
Prevenção Secundária
Autorrelato
Fatores Socioeconômicos
Fatores de Tempo
Cooperação e Adesão ao Tratamento/psicologia
Resultado do Tratamento
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Nm] Nome de substância:
47E5O17Y3R (Phenylalanine)
[Em] Mês de entrada:1803
[Cu] Atualização por classe:180308
[Lr] Data última revisão:
180308
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:171222
[St] Status:MEDLINE


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[PMID]:28968409
[Au] Autor:Turnbull AE; Chessare CM; Coffin RK; Needham DM
[Ad] Endereço:Outcomes After Critical Illness and Surgery (OACIS) Group, Johns Hopkins University, Baltimore, Maryland, United States of America.
[Ti] Título:A brief intervention for preparing ICU families to be proxies: A phase I study.
[So] Source:PLoS One;12(10):e0185483, 2017.
[Is] ISSN:1932-6203
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:BACKGROUND: Family members of critically ill patients report high levels of conflict with clinicians, have poor understanding of prognosis, struggle to make decisions, and experience substantial symptoms of anxiety, depression, and post-traumatic stress regardless of patient survival status. Efficient interventions are needed to prepare these families to act as patient proxies. OBJECTIVES: To assess a brief "patient activation" intervention designed to set expectations and prepare families of adult intensive care unit (ICU) patients to communicate effectively with the clinical team. DESIGN: Phase I study of acceptability and immediate side effects. SETTING AND PARTICIPANTS: 122 healthcare proxies of 111 consecutive patients with a stay of ≥24 hours in the Johns Hopkins Hospital Medical ICU (MICU), in Baltimore, Maryland. INTERVENTION: Reading aloud to proxies from a booklet (Flesch-Kincard reading grade level 3.8) designed with multidisciplinary input including from former MICU proxies. RESULTS: Enrolled proxies had a median age of 51 years old with 83 (68%) female, and 55 (45%) African-American. MICU mortality was 18%, and 37 patients (33%) died in hospital or were discharged to hospice. Among proxies 98% (95% CI: 94% - 100%) agreed or strongly agreed that the intervention was appropriate, 98% (95% CI: 92% - 99%) agreed or strongly agreed that it is important for families to know the information in the booklet, and 54 (44%, 95% CI 35%- 54%) agreed or strongly agreed that parts of the booklet are upsetting. Upset vs. non-upset proxies were not statistically or substantially different in terms of age, sex, education level, race, relation to the patient, or perceived decision-making authority. CONCLUSIONS: This patient activation intervention was acceptable and important to nearly all proxies. Frequently, the intervention was simultaneously rated as both acceptable/important and upsetting. Proxies who rated the intervention as upsetting were not identifiable based on readily available proxy or patient characteristics.
[Mh] Termos MeSH primário: Família
Unidades de Terapia Intensiva
Procurador
[Mh] Termos MeSH secundário: Adulto
Feminino
Seres Humanos
Masculino
Meia-Idade
[Pt] Tipo de publicação:CLINICAL TRIAL, PHASE I; JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171031
[Lr] Data última revisão:
171031
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:171003
[St] Status:MEDLINE
[do] DOI:10.1371/journal.pone.0185483


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[PMID]:28915184
[Au] Autor:Gluck S; Summers MJ; Goddard TP; Andrawos A; Smith NC; Lange K; Iwashyna TJ; Deane AM
[Ad] Endereço:1Intensive Care Unit, Royal Adelaide Hospital, North Terrace, Adelaide, SA, Australia. 2Discipline of Acute Care Medicine, University of Adelaide, Adelaide, SA, Australia. 3National Health and Medical Research Council of Australia Centre for Research Excellence in Translating Nutritional Science to Good Health, Adelaide, SA, Australia. 4Department of Internal Medicine, University of Michigan Health System, University of Michigan, Ann Arbor, MI. 5Center for Clinical Management Research, VA Ann Arbor Health System, Ann Arbor, MI. 6Intensive Care Unit, The Royal Melbourne Hospital, University of Melbourne, Parkville, VIC, Australia. 7Department of Medicine, Royal Melbourne Hospital, University of Melbourne, Melbourne, VIC, Australia.
[Ti] Título:Wide Disagreement Between Alternative Assessments of Premorbid Physical Activity: Subjective Patient and Surrogate Reports and Objective Smartphone Data.
[So] Source:Crit Care Med;45(10):e1036-e1042, 2017 Oct.
[Is] ISSN:1530-0293
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:OBJECTIVES: Surrogate-decision maker and patient self-reported estimates of the distances walked prior to acute illness are subjective and may be imprecise. It may be possible to extract objective data from a patient's smartphone, specifically, step and global position system data, to quantify physical activity. The objectives were to 1) assess the agreement between surrogate-decision maker and patient self-reported estimates of distance and time walked prior to resting and daily step-count and 2) determine the feasibility of extracting premorbid physical activity (step and global position system) data from critically ill patients. DESIGN: Prospective cohort study. SETTING: Quaternary ICU. PATIENTS: Fifty consecutively admitted adult patients who owned a smartphone, who were ambulatory at baseline, and who remained in ICU for more than 48 hours participated. MEASURMENTS AND MAIN RESULTS: There was no agreement between patients and surrogates for all premorbid walking metrics (mean bias 108% [99% lower to 8,700% higher], 83% [97% to 2,100%], and 71% [96% to 1,080%], for distance, time, and steps, respectively). Step and/or global position system data were successfully extracted from 24 of 50 phones (48%; 95% CI, 35-62%). Surrogate-decision makers, but not patient self-reported, estimates of steps taken per day correlated with smartphone data (surrogates: n = 13, ρ = 0.56, p < 0.05; patients: n = 13, ρ = 0.30, p = 0.317). CONCLUSION: There was a lack of agreement between surrogate-decision maker and patient self-reported subjective estimates of distance walked. Obtaining premorbid physical activity data from the current-generation smartphones was feasible in approximately 50% of patients.
[Mh] Termos MeSH primário: Procurador
Autorrelato
Smartphone
Caminhada
[Mh] Termos MeSH secundário: Estudos de Coortes
Feminino
Sistemas de Informação Geográfica
Seres Humanos
Unidades de Terapia Intensiva
Masculino
Meia-Idade
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1709
[Cu] Atualização por classe:170925
[Lr] Data última revisão:
170925
[Sb] Subgrupo de revista:AIM; IM
[Da] Data de entrada para processamento:170916
[St] Status:MEDLINE
[do] DOI:10.1097/CCM.0000000000002599


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[PMID]:28842449
[Au] Autor:Thomalla G; Boutitie F; Fiebach JB; Simonsen CZ; Nighoghossian N; Pedraza S; Lemmens R; Roy P; Muir KW; Heesen C; Ebinger M; Ford I; Cheng B; Cho TH; Puig J; Thijs V; Endres M; Fiehler J; Gerloff C
[Ad] Endereço:From Klinik und Poliklinik für Neurologie, Kopf- und Neurozentrum (G.T., C.H., B.C., C.G.), and Klinik und Poliklinik für Neuroradiologische Diagnostik und Intervention, Diagnostikzentrum (J.F.), Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany; Service de Biostatistique (F.B., P.R.) and Dep
[Ti] Título:Effect of informed consent on patient characteristics in a stroke thrombolysis trial.
[So] Source:Neurology;89(13):1400-1407, 2017 Sep 26.
[Is] ISSN:1526-632X
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:OBJECTIVE: To determine whether the manner of consent, i.e., informed consent by patients themselves or informed consent by proxy, affects clinical characteristics of samples of acute stroke patients enrolled in clinical trials. METHODS: We analyzed the manner of obtaining informed consent in the first 1,005 patients from WAKE-UP, an investigator-initiated, randomized, placebo-controlled trial of MRI-based thrombolysis in stroke patients with unknown time of symptom onset running in 6 European countries. Patients providing informed consent by themselves were compared with patients enrolled by proxy consent. Baseline clinical measures were compared between groups. RESULTS: In 359 (35.7%) patients, informed consent was by proxy. Patients with proxy consent were older (median 71 vs 66 years, < 0.0001) and had a higher frequency of arterial hypertension (58.2% vs 43.4%, < 0.0001). They showed higher scores on the NIH Stroke Scale (median 11 vs 5, < 0.0001) and more frequently aphasia (73.7% vs 20.0%, < 0.0001). The rate of proxy consent varied among countries ( < 0.0001), ranging from 77.1% in Spain to 1.2% in Denmark. CONCLUSIONS: Patients recruited by proxy consent were older, had more severe strokes, and had higher prevalence of aphasia than those with capacity to give personal consent. Variations in the manner of consent across countries may influence trial results. CLINICALTRIALSGOV AND CLINICALTRIALSREGISTEREU IDENTIFIERS: NCT01525290 (clinicaltrials.gov); 2011-005906-32 (clinicaltrialsregister.eu).
[Mh] Termos MeSH primário: Consentimento Livre e Esclarecido
Acidente Vascular Cerebral/tratamento farmacológico
Terapia Trombolítica
[Mh] Termos MeSH secundário: Fatores Etários
Idoso
Afasia/epidemiologia
Afasia/etiologia
Encéfalo/diagnóstico por imagem
Método Duplo-Cego
Europa (Continente)
Feminino
Seres Humanos
Hipertensão/complicações
Hipertensão/epidemiologia
Imagem por Ressonância Magnética
Masculino
Meia-Idade
Prevalência
Procurador
Índice de Gravidade de Doença
Acidente Vascular Cerebral/complicações
Acidente Vascular Cerebral/diagnóstico por imagem
Acidente Vascular Cerebral/epidemiologia
[Pt] Tipo de publicação:COMPARATIVE STUDY; JOURNAL ARTICLE; MULTICENTER STUDY; RANDOMIZED CONTROLLED TRIAL
[Em] Mês de entrada:1709
[Cu] Atualização por classe:171029
[Lr] Data última revisão:
171029
[Sb] Subgrupo de revista:AIM; IM
[Da] Data de entrada para processamento:170827
[St] Status:MEDLINE
[do] DOI:10.1212/WNL.0000000000004414


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[PMID]:28728194
[Au] Autor:Christ M; von Auenmüller KI; Grett M; Amirie S; Brand M; Trappe HJ
[Ti] Título:[Relevance of Living Wills During Post-Resuscitation Care].
[Ti] Título:Stellenwert der Patientenverfügung in der Postreanimationsbehandlung..
[So] Source:Dtsch Med Wochenschr;142(14):e95-e99, 2017 Jul.
[Is] ISSN:1439-4413
[Cp] País de publicação:Germany
[La] Idioma:ger
[Ab] Resumo:There is hardly any evidence about the influence of living wills on acute life-threatening disease like out-of-hospital cardiac-arrest (OHCA). We therefore initiated this study to quantify the percentage of victims of OHCA who's living wills are available during post-resuscitation care. All victims of OHCA who were admitted to our hospital between January 1 2008 and July 31 2016 were identified by analysis of our central admission register. Data from individual patients were collected from the patient's health records and anonymously stored on a central database. Altogether, there were 343 victims of OHCA admitted to our hospital between January 1 2008 and July 31 2016, including 16 patients (4.7 %) with living wills and 18 patients (5.2 %) with legal health care proxy. Survival rates were 31.2 % in patients with living wills, 27.8 % in patients with legal health care proxy and 33.3 % in patients without such a document. In this study, the percentage of victims of OHCA with available living wills during post-resuscitation care was low. The presentation of living wills or legal health care proxies during post-resuscitation care of victims from OHCA was not equivalent to the patient`s death. Most often, discussion with relatives led to the decision to withdraw further therapy.
[Mh] Termos MeSH primário: Hospitalização/estatística & dados numéricos
Testamentos Quanto à Vida/estatística & dados numéricos
Parada Cardíaca Extra-Hospitalar/mortalidade
Parada Cardíaca Extra-Hospitalar/reabilitação
Ressuscitação/mortalidade
Ressuscitação/utilização
[Mh] Termos MeSH secundário: Adolescente
Adulto
Distribuição por Idade
Idoso
Idoso de 80 Anos ou mais
Feminino
Alemanha/epidemiologia
Seres Humanos
Masculino
Meia-Idade
Prevalência
Procurador/estatística & dados numéricos
Distribuição por Sexo
Taxa de Sobrevida
Revisão da Utilização de Recursos de Saúde
Adulto Jovem
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1708
[Cu] Atualização por classe:170818
[Lr] Data última revisão:
170818
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170721
[St] Status:MEDLINE
[do] DOI:10.1055/s-0043-100052


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Texto completo SciELO Saúde Pública
[PMID]:28678941
[Au] Autor:Quevedo ALA; Leotti VB; Goulart BNG
[Ad] Endereço:Universidade Federal do Rio Grande do Sul, Porto Alegre, Brasil.
[Ti] Título:[Analysis of prevalence of self-reported hearing loss and associated factors: primary versus proxy informant].
[Ti] Título:Análise da prevalência de perda auditiva autodeclarada e fatores associados: informante primário versus proxy..
[So] Source:Cad Saude Publica;33(6):e0076216, 2017 Jul 03.
[Is] ISSN:1678-4464
[Cp] País de publicação:Brazil
[La] Idioma:por
[Ab] Resumo:The objective was to evaluate differences between prevalence rates for self-reported hearing loss and associated factors, obtained from responses by primary and proxy informants in a Population-Based Study on Human Communication Disorders (DCH-POP in Portuguese). This was a study on epidemiological methods using data from a cross-sectional household survey with a sample of 1,253 individuals from Southern Brazil. To verify differences between prevalence rates comparing primary informants and proxy informants, we used the chi-square or Fisher's exact test for categorical variables and Mann-Whitney for continuous variables. The log-binomial model was adjusted for hearing loss as the dependent variable, considering three datasets: the entire sample, only primary informants, and only proxy informants, estimating association by prevalence ratios. In the final models, only the independent variables age and dizziness were associated with hearing loss, independently of the dataset that was used. Proxy informants generally underestimated the prevalence rates for the target outcomes, when compared to primary informants.
[Mh] Termos MeSH primário: Perda Auditiva/diagnóstico
Perda Auditiva/epidemiologia
Procurador/estatística & dados numéricos
Autorrelato
[Mh] Termos MeSH secundário: Adolescente
Adulto
Brasil/epidemiologia
Criança
Pré-Escolar
Estudos Transversais
Feminino
Seres Humanos
Lactente
Masculino
Meia-Idade
Prevalência
Fatores de Risco
Fatores Socioeconômicos
Inquéritos e Questionários
Adulto Jovem
[Pt] Tipo de publicação:COMPARATIVE STUDY; JOURNAL ARTICLE
[Em] Mês de entrada:1707
[Cu] Atualização por classe:170726
[Lr] Data última revisão:
170726
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170706
[St] Status:MEDLINE


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[PMID]:28658025
[Au] Autor:Chen YC; Fan HY; Curtis JR; Lee OK; Liu CK; Huang SJ
[Ad] Endereço:1Department of Family Medicine, Taipei City Hospital, ZhongXing Branch, Taipei, Taiwan. 2School of Nutrition and Health Sciences, College of Nutrition, Taipei Medical University, Taipei, Taiwan. 3Division of Pulmonary and Critical Care Medicine, Department of Medicine, Cambia Palliative Care Center of Excellence, University of Washington, Seattle, WA. 4Taipei City Hospital, Taipei, Taiwan. 5Institute of Clinical Medicine, School of Medicine, National Yang-Ming University, Taipei, Taiwan. 6Department of Medicine and Graduate Institute of Business Administration, Fu-Jen Catholic University, Taipei, Taiwan. 7Surgical Department, Medical College, National Taiwan University, Taipei, Taiwan.
[Ti] Título:Determinants of Receiving Palliative Care and Ventilator Withdrawal Among Patients With Prolonged Mechanical Ventilation.
[So] Source:Crit Care Med;45(10):1625-1634, 2017 Oct.
[Is] ISSN:1530-0293
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:OBJECTIVES: Increasing numbers of patients with prolonged mechanical ventilation generates a tremendous strain on healthcare systems. Patients with prolonged mechanical ventilation suffer from long-term poor quality of life. However, no study has ever explored the willingness to receive palliative care or terminal withdrawal and the factors influencing willingness. DESIGN: Cross-sectional study. SETTING: Five different hospitals of Taipei City Hospital system. PATIENTS: Adult patients with ventilatory support for more than 60 days. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We identified the family members of 145 consecutive patients with prolonged mechanical ventilation in five hospitals of Taipei City Hospital system and enrolled family members for 106 patients (73.1%). We collected information from patient families' regarding concepts (knowledge, attitude, and experiences) of palliative care, caregiver burden, family function, patient quality of life, and physician-family communications. From the medical record, we obtained duration of hospitalization, consciousness level, disease severity, medical cost, and the presence of do-not-resuscitate orders. The vast majority of family members agreed with the concept of palliative care (90.4%) with 17.3% of the family members agreeing to ventilator withdrawal currently and 67.5% terminally in anticipation of death. Approximately half of the family members regretted having chosen prolonged mechanical ventilation (56.7%). Reduced patient quality of life and increased family understanding of palliative care significantly associated with increased caregiver willingness to endorse palliative care and withdraw life-sustaining agents in anticipation of death. Longer duration of ventilator usage and hospitalization was associated with increased feelings of regret about choosing prolonged mechanical ventilation. CONCLUSIONS: During prolonged mechanical ventilation, physicians should thoroughly discuss its benefits and burdens. Families should be given the opportunity to discuss the circumstances under which they might request the implementation of palliative care or withdrawal of mechanical ventilation in order to avoid prolonging the dying process.
[Mh] Termos MeSH primário: Atitude Frente à Saúde
Família/psicologia
Cuidados Paliativos
Procurador
Respiração Artificial
Suspensão de Tratamento
[Mh] Termos MeSH secundário: Idoso
Estudos Transversais
Feminino
Hospitalização
Seres Humanos
Tempo de Internação
Masculino
Meia-Idade
Qualidade de Vida
Taiwan/epidemiologia
Doente Terminal
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1709
[Cu] Atualização por classe:170925
[Lr] Data última revisão:
170925
[Sb] Subgrupo de revista:AIM; IM
[Da] Data de entrada para processamento:170629
[St] Status:MEDLINE
[do] DOI:10.1097/CCM.0000000000002569


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[PMID]:28614032
[Au] Autor:Nicholas S; Stephens R
[Ad] Endereço:Locum Consultant Anaesthetist, The Whittington Hospital, London.
[Ti] Título:Implications of consent for medical practice.
[So] Source:Br J Hosp Med (Lond);78(6):C92-C95, 2017 Jun 02.
[Is] ISSN:1750-8460
[Cp] País de publicação:England
[La] Idioma:eng
[Mh] Termos MeSH primário: Consentimento Livre e Esclarecido/legislação & jurisprudência
Competência Mental/legislação & jurisprudência
[Mh] Termos MeSH secundário: Diretivas Antecipadas/legislação & jurisprudência
Pesquisa Biomédica/legislação & jurisprudência
Confidencialidade/legislação & jurisprudência
Seres Humanos
Consentimento Informado por Menores/legislação & jurisprudência
Procurador/legislação & jurisprudência
Reino Unido
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1708
[Cu] Atualização por classe:170829
[Lr] Data última revisão:
170829
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170615
[St] Status:MEDLINE
[do] DOI:10.12968/hmed.2017.78.6.C92


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[PMID]:28526055
[Au] Autor:Rand S; Caiels J; Collins G; Forder J
[Ad] Endereço:Quality and Outcomes of person-centred care policy Research Unit (QORU), University of Kent, Cornwallis Building, University of Kent, Canterbury, CT2 7NF, UK. s.e.rand@kent.ac.uk.
[Ti] Título:Developing a proxy version of the Adult social care outcome toolkit (ASCOT).
[So] Source:Health Qual Life Outcomes;15(1):108, 2017 May 19.
[Is] ISSN:1477-7525
[Cp] País de publicação:England
[La] Idioma:eng
[Ab] Resumo:BACKGROUND: Social care-related quality of life is a key outcome indicator used in the evaluation of social care interventions and policy. It is not, however, always possible to collect quality of life data by self-report even with adaptations for people with cognitive or communication impairments. A new proxy-report version of the Adult Social Care Outcomes Toolkit (ASCOT) measure of social care-related quality of life was developed to address the issues of wider inclusion of people with cognitive or communication difficulties who may otherwise be systematically excluded. The development of the proxy-report ASCOT questionnaire was informed by literature review and earlier work that identified the key issues and challenges associated with proxy-reported outcomes. METHODS: To evaluate the acceptability and content validity of the ASCOT-Proxy, qualitative cognitive interviews were conducted with unpaid carers or care workers of people with cognitive or communication impairments. The proxy respondents were invited to 'think aloud' while completing the questionnaire. Follow-up probes were asked to elicit further detail of the respondent's comprehension of the format, layout and content of each item and also how they weighed up the options to formulate a response. RESULTS: A total of 25 unpaid carers and care workers participated in three iterative rounds of cognitive interviews. The findings indicate that the items were well-understood and the concepts were consistent with the item definitions for the standard self-completion version of ASCOT with minor modifications to the draft ASCOT-Proxy. The ASCOT-Proxy allows respondents to rate the proxy-proxy and proxy-patient perspectives, which improved the acceptability of proxy report. CONCLUSIONS: A new proxy-report version of ASCOT was developed with evidence of its qualitative content validity and acceptability. The ASCOT-Proxy is ready for empirical testing of its suitability for data collection as a self-completion and/or interview questionnaire, and also evaluation of its psychometric properties.
[Mh] Termos MeSH primário: Cuidadores/psicologia
Procurador
Qualidade de Vida/psicologia
Inquéritos e Questionários/normas
[Mh] Termos MeSH secundário: Adulto
Feminino
Seres Humanos
Entrevistas como Assunto
Masculino
Psicometria
Pesquisa Qualitativa
[Pt] Tipo de publicação:JOURNAL ARTICLE; VALIDATION STUDIES
[Em] Mês de entrada:1709
[Cu] Atualização por classe:170915
[Lr] Data última revisão:
170915
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170521
[St] Status:MEDLINE
[do] DOI:10.1186/s12955-017-0682-0


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[PMID]:28473036
[Au] Autor:DeMartino ES; Wordingham SE; Stulak JM; Boilson BA; Fuechtmann KR; Singh N; Sulmasy DP; Pajaro OE; Mueller PS
[Ad] Endereço:Division of Pulmonary and Critical Care Medicine, Mayo Clinic, Rochester, MN.
[Ti] Título:Ethical Analysis of Withdrawing Total Artificial Heart Support.
[So] Source:Mayo Clin Proc;92(5):719-725, 2017 May.
[Is] ISSN:1942-5546
[Cp] País de publicação:England
[La] Idioma:eng
[Ab] Resumo:OBJECTIVES: To describe the characteristics of patients who undergo withdrawal of total artificial heart support and to explore the ethical aspects of withdrawing this life-sustaining treatment. PATIENTS AND METHODS: We retrospectively reviewed the medical records of all adult recipients of a total artificial heart at Mayo Clinic from the program's inception in 2007 through June 30, 2015. Management of other life-sustaining therapies, approach to end-of-life decision making, engagement of ethics and palliative care consultation, and causes of death were analyzed. RESULTS: Of 47 total artificial heart recipients, 14 patients or their surrogates (30%) requested withdrawal of total artificial heart support. No request was denied by treatment teams. All 14 patients were supported with at least 1 other life-sustaining therapy. Only 1 patient was able to participate in decision making. CONCLUSION: It is widely held to be ethically permissible to withdraw a life-sustaining treatment when the treatment no longer meets the patient's health care-related goals (ie, the burdens outweigh the benefits). These data suggest that some patients, surrogates, physicians, and other care providers believe that this principle extends to the withdrawal of total artificial heart support.
[Mh] Termos MeSH primário: Coração Artificial/ética
Cuidados para Prolongar a Vida/ética
Insuficiência de Múltiplos Órgãos/mortalidade
Suspensão de Tratamento/ética
[Mh] Termos MeSH secundário: Adulto
Diretivas Antecipadas/ética
Diretivas Antecipadas/estatística & dados numéricos
Idoso
Causas de Morte
Tomada de Decisões/ética
Análise Ética
Feminino
Coração Artificial/efeitos adversos
Coração Artificial/estatística & dados numéricos
Seres Humanos
Masculino
Futilidade Médica/ética
Meia-Idade
Avaliação de Resultados (Cuidados de Saúde)/estatística & dados numéricos
Procurador
Estudos Retrospectivos
Análise de Sobrevida
[Pt] Tipo de publicação:CASE REPORTS; JOURNAL ARTICLE
[Em] Mês de entrada:1708
[Cu] Atualização por classe:171025
[Lr] Data última revisão:
171025
[Sb] Subgrupo de revista:AIM; IM
[Da] Data de entrada para processamento:170506
[St] Status:MEDLINE



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