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3.
Artigo em Inglês | CONASS, Sec. Est. Saúde SP, SESSP-IDPCPROD, Sec. Est. Saúde SP | ID: biblio-1555130

RESUMO

OBJECTIVE: To identify characteristics associated with an intention to complete advance directives (ADs) and end-of-life treatment preferences for outpatients with heart failure (HF). METHODS: A cross-sectional, analytical study. Sociodemographic and clinical data were collected from 108 patients with HF in an outpatient clinic in São Paulo, SP, Brazil. Quality of life (QoL) was assessed using the Minnesota Living with Heart Failure Questionnaire; knowledge about HF and the intention to complete ADs were assessed using a script. The relationships among variables were assessed through the chi-square and Mann-Whitney tests, with p < 0.05 considered significant. RESULTS: The intention to complete ADs was significantly associated with reporting adherence to pharmacological recommendations (99% vs. 88.1%, p = 0.02), worse QoL (29.7 ± 18.2 vs. 20.9 ± 11.0; p = 0.0336), perceived knowledge about HF (89.7% vs. 63.6%, p = 0.0495), not wishing the healthcare providers would decide about treatment (27.3% vs. 2.15, p = 0.0026), and considering ADs useful (91.8% vs. 27.3%, p < 0.001). End-of-life treatment preferences included living as long as possible (50.5%), not being sedated (37.1%), and staying close to family and friends for as long as possible (32.0%). CONCLUSIONS: Characteristics associated with an intention to complete ADs and end-of-life treatment preferences were identified in patients with HF.


Assuntos
Cuidados Paliativos , Diretivas Antecipadas
4.
G Ital Cardiol (Rome) ; 25(6): 383-389, 2024 Jun.
Artigo em Italiano | MEDLINE | ID: mdl-38808933

RESUMO

The Italian law 217/2019 on "Informed consent and advance directives" is an important step forward in the redefinition of patient-doctor relationships. The law points out the principles of the decisional autonomy and freedom of the patient to choose the treatment options. However, it is underestimated and largely unapplied by the Italian cardiologists. The main elements of patient-doctor communication are present in the law. The most important is the time devoted to the patient-doctor relationship, necessary to ease the disease awareness. This time is clearly emphasized in the law, but the healthcare institutions did not arrange for the appropriate organizational procedures. Through the advance directives (ADs) the patients may express their own wishes about healthcare treatments, as well as their consent or refusal regarding the diagnostic or therapeutical doctors' suggestions, allowing their respect in case they become incompetent. This right is supported by the patients' designation of a healthcare proxy, who can interact for them with the healthcare team. However, after 6 years since the law enactment, only 0.4% of the Italian citizens signed ADs, due to insufficient information and organization by the healthcare authorities. In the Law, the advance care planning is closely related to ADs. In this process, the adults can understand and share their personal values, life goals and preferences, in order to define the potential future medical care and to discuss all the issues with family and physicians. These processes can be integrated in a broader shared decision-making, a strong tool of the patient-doctor alliance.


Assuntos
Diretivas Antecipadas , Consentimento Livre e Esclarecido , Relações Médico-Paciente , Itália , Diretivas Antecipadas/legislação & jurisprudência , Humanos , Consentimento Livre e Esclarecido/legislação & jurisprudência , Comunicação , Autonomia Pessoal , Tomada de Decisões , Fatores de Tempo
5.
PLoS One ; 19(4): e0301398, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38635825

RESUMO

The banking industry necessitates implementing an early warning system to effectively identify the factors that impact bank managers and enable them to make informed decisions, thereby mitigating systemic risk. Identifying factors that influence banks in times of stability and crisis is crucial, as it ultimately contributes to developing an improved early warning system. This study undertakes a comparative analysis of the stability of Indonesian Islamic and conventional banking across distinct economic regimes-crisis and stability. We analyze monthly banking data from December 2007 to November 2022 using the Markov Switching Dynamic Regression technique. The study focuses on conducting a comparative analysis between Islamic banks, represented by Islamic Commercial Bank (ICB) and Islamic Rural Bank (IRB), and conventional banks, represented by the Conventional Commercial Bank (CCB) and Conventional Rural Bank (CRB). The findings reveal that both Islamic and conventional banks exhibit a higher probability of being in a stable regime than a crisis regime. Notably, Islamic banks demonstrate a greater propensity to remain in a stable regime than their conventional counterparts. However, in a crisis regime, the likelihood of recovery for Sharia-compliant institutions is lower than for conventional banks. Furthermore, our analysis indicates that larger banks exhibit higher stability than their smaller counterparts regarding assets and size. This study pioneers a comprehensive comparison of the Z-score, employed as a proxy for stability, between two distinct classifications of Indonesian banks: Sharia (ICB and IRB) and conventional (CCB and CRB). The result is expected to improve our awareness of the elements that affect the stability of Islamic and conventional banking in Indonesia, leading to a deeper comprehension of their dynamics.


Assuntos
Diretivas Antecipadas , Indústrias , Humanos , Indonésia , Islamismo , Probabilidade
6.
Hastings Cent Rep ; 54(2): 22-33, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38639171

RESUMO

The standard of care in the United States favors stabilizing any adult who arrives in an emergency department after a failed suicide attempt, even if he appears decisionally capacitated and refuses life-sustaining treatment. I challenge this ubiquitous practice. Emergency clinicians generally have a moral obligation to err on the side of stabilizing even suicide attempters who refuse such interventions. This obligation reflects the fact that it is typically infeasible to determine these patients' level of decisional capacitation-among other relevant information-in this unique setting. Nevertheless, I argue, stabilizing suicide attempters over their objection sometimes violates a basic yet insufficiently appreciated right of theirs-the right against bodily invasion. In such cases, it is at least prima facie wrong to stabilize a patient who wants to die even if they lack a contrary advance directive or medical order and suffer from no terminal physical illness.


Assuntos
Diretivas Antecipadas , Tentativa de Suicídio , Masculino , Adulto , Humanos , Estados Unidos , Serviço Hospitalar de Emergência
7.
BMC Med Ethics ; 25(1): 44, 2024 Apr 10.
Artigo em Inglês | MEDLINE | ID: mdl-38600485

RESUMO

BACKGROUND: The often poor prognosis associated with cancer necessitates empowering patients to express their care preferences. Yet, the prevalence of Advance Directives (AD) among oncology patients remains low. This study investigated oncologists' perspectives on the interests and challenges associated with implementing AD. METHODS: A French national online survey targeting hospital-based oncologists explored five areas: AD information, writing support, AD usage, personal perceptions of AD's importance, and respondent's profile. The primary outcome was to assess how frequently oncologists provide patients with information about AD in daily clinical practice. Additionally, we examined factors related to delivering information on AD. RESULTS: Of the 410 oncologists (50%) who responded to the survey, 75% (n = 308) deemed AD relevant. While 36% (n = 149) regularly inform patients about AD, 25% (n = 102) remain skeptical about AD. Among the respondents who do not consistently discuss AD, the most common reason given is the belief that AD may induce anxiety (n = 211/353; 60%). Of all respondents, 90% (n = 367) believe patients require specific information to draft relevant AD. Physicians with experience in palliative care were more likely to discuss AD (43% vs 32.3%, p = 0.027). Previous experience in critical care was associated with higher levels of distrust towards AD (31.5% vs 18.8%, p = 0.003), and 68.5% (n = 281) of the respondents expressed that designating a "person of trust" would be more appropriate than utilizing AD. CONCLUSION: Despite the perceived relevance of AD, only a third of oncologists regularly apprise their patients about them. Significant uncertainty persists about the safety and relevance of AD.


Assuntos
Neoplasias , Oncologistas , Humanos , Estudos Transversais , Estudos Prospectivos , Diretivas Antecipadas , Cuidados Paliativos , Neoplasias/terapia
10.
Medicina (Kaunas) ; 60(4)2024 Mar 25.
Artigo em Inglês | MEDLINE | ID: mdl-38674179

RESUMO

Despite recent advances in resuscitation science, outcomes in patients with out-of-hospital cardiac arrest (OHCA) with initial non-shockable rhythm remains poor. Those with initial non-shockable rhythm have some epidemiological features, including the proportion of patients with a witnessed arrest, bystander cardiopulmonary resuscitation (CPR), age, and presumed etiology of cardiac arrest have been reported, which differ from those with initial shockable rhythm. The discussion regarding better end-of-life care for patients with OHCA is a major concern among citizens. As one of the efforts to avoid unwanted resuscitation, advance directive is recognized as a key intervention, safeguarding patient autonomy. However, several difficulties remain in enhancing the effective use of advance directives for patients with OHCA, including local regulation of their use, insufficient utilization of advance directives by emergency medical services at the scene, and a lack of established tools for discussing futility of resuscitation in advance care planning. In addition, prehospital termination of resuscitation is a common practice in many emergency medical service systems to assist clinicians in deciding whether to discontinue resuscitation. However, there are also several unresolved problems, including the feasibility of implementing the rules for several regions and potential missed survivors among candidates for prehospital termination of resuscitation. Further investigation to address these difficulties is warranted for better end-of-life care of patients with OHCA.


Assuntos
Diretivas Antecipadas , Reanimação Cardiopulmonar , Parada Cardíaca Extra-Hospitalar , Assistência Terminal , Humanos , Parada Cardíaca Extra-Hospitalar/terapia , Assistência Terminal/métodos , Assistência Terminal/normas , Reanimação Cardiopulmonar/métodos , Serviços Médicos de Emergência/métodos , Serviços Médicos de Emergência/normas
11.
BMC Health Serv Res ; 24(1): 426, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38570808

RESUMO

BACKGROUND: Providing individualised healthcare in line with patient wishes is a particular challenge for emergency healthcare professionals. Documentation of patient wishes (DPW), e.g. as advance directives, can guide clinicians in making end-of-life decisions that respect the patient's wishes and autonomy. However, patient centered decisions are hindered by limited availability of DPWs in emergency settings. OBJECTIVE: This systematic review aims to congregate present data on recorded rates for DPW existence and availability in the emergency department (ED) as well as contributing factors for these rates. METHODS: We searched MEDLINE, Google Scholar, Embase and Web of Science databases in September 2023. Publications providing primary quantitative data on DPW in the ED were assessed. Publications referring only to a subset of ED patients (other than geriatric) and investigating DPW issued after admission were excluded. RESULTS: A total of 22 studies from 1996 to 2021 were included in the analysis. Most were from the US (n = 12), followed by Australia (n = 4), Canada (n = 2), South Korea, Germany, the United Kingdom and Switzerland (n = 1 each). In the general adult population presenting to the ED, 19.9-27.8% of patients reported having some form of DPW, but only in 6.8% or less it was available on presentation. In the geriatric population, DPW rates (2.6-79%) as well as their availability (1.1-48.8%) varied widely. The following variables were identified as positive predictors of having DPW, among others: higher age, poorer overall health, as well as sociodemographic factors, such as female gender, having children, being in a relationship, higher level of education or a recent previous presentation to hospital. CONCLUSIONS: Existence and availability of a recorded DPW among ED patients was low in general and even in geriatric populations mostly well below 50%. While we were able to gather data on prevalence and predictors, this was limited by heterogeneous data. We believe further research is needed to explore the quality of DPW and measures to increase both rates of existence and availability of DPW in the ED.


Assuntos
Diretivas Antecipadas , Serviço Hospitalar de Emergência , Idoso , Adulto , Criança , Humanos , Feminino , Hospitalização , Pessoal de Saúde , Tomada de Decisões
12.
BMC Med Ethics ; 25(1): 40, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38570826

RESUMO

BACKGROUND: Advance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people's attitudes towards ADs. METHODS: An online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a -form-which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale-was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023. RESULTS: A total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence. CONCLUSION: The results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens' autonomy in end-of-life care planning.


Assuntos
Diretivas Antecipadas , Atitude , População Europeia , Adulto , Humanos , Feminino , Portugal , Estudos Transversais , Conhecimentos, Atitudes e Prática em Saúde
13.
J Gerontol Nurs ; 50(4): 11-15, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38569104

RESUMO

PURPOSE: To gather sufficient qualitative data to create an intervention that would prevent direct care workers (DCWs) from sending residents with do-not-hospitalize (DNH) orders to the hospital. METHOD: This was a qualitative study with eight participants that included a descriptive survey followed by semi-structured interviews. RESULTS: DCWs were unfamiliar with DNH orders and their thinking on end-of-life care was binary (hospice or hospital) and protocol driven. However, supportive leaders were able to help DCWs problem-solve these complicated scenarios. Results were mixed on whether having a RN on site was helpful. CONCLUSION: DCWs may benefit from having access to a nurse with palliative care experience when making decisions about residents with DNH orders. [Journal of Gerontological Nursing, 50(4), 11-15.].


Assuntos
Moradias Assistidas , Hospitais para Doentes Terminais , Humanos , Hospitalização , Diretivas Antecipadas , Casas de Saúde
14.
Int J Law Psychiatry ; 94: 101985, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38579525

RESUMO

People with impaired decision-making capacity enjoy the same rights to access technology as people with full capacity. Our paper looks at realising this right in the specific contexts of artificial intelligence (AI) and mental capacity legislation. Ireland's Assisted Decision-Making (Capacity) Act, 2015 commenced in April 2023 and refers to 'assistive technology' within its 'communication' criterion for capacity. We explore the potential benefits and risks of AI in assisting communication under this legislation and seek to identify principles or lessons which might be applicable in other jurisdictions. We focus especially on Ireland's provisions for advance healthcare directives because previous research demonstrates that common barriers to advance care planning include (i) lack of knowledge and skills, (ii) fear of starting conversations about advance care planning, and (iii) lack of time. We hypothesise that these barriers might be overcome, at least in part, by using generative AI which is already freely available worldwide. Bodies such as the United Nations have produced guidance about ethical use of AI and these guide our analysis. One of the ethical risks in the current context is that AI would reach beyond communication and start to influence the content of decisions, especially among people with impaired decision-making capacity. For example, when we asked one AI model to 'Make me an advance healthcare directive', its initial response did not explicitly suggest content for the directive, but it did suggest topics that might be included, which could be seen as setting an agenda. One possibility for circumventing this and other shortcomings, such as concerns around accuracy of information, is to look to foundational models of AI. With their capabilities to be trained and fine-tuned to downstream tasks, purpose-designed AI models could be adapted to provide education about capacity legislation, facilitate patient and staff interaction, and allow interactive updates by healthcare professionals. These measures could optimise the benefits of AI and minimise risks. Similar efforts have been made to use AI more responsibly in healthcare by training large language models to answer healthcare questions more safely and accurately. We highlight the need for open discussion about optimising the potential of AI while minimising risks in this population.


Assuntos
Inteligência Artificial , Competência Mental , Humanos , Inteligência Artificial/legislação & jurisprudência , Competência Mental/legislação & jurisprudência , Irlanda , Tomada de Decisões , Diretivas Antecipadas/legislação & jurisprudência
15.
J Pain Symptom Manage ; 68(1): 53-60, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38574875

RESUMO

CONTEXT: Despite being one of the fastest growing ethnic groups in the U.S., there exists a gap in how treatment preferences among Chinese Americans are expressed and enacted upon in inpatient settings. OBJECTIVES: To compare the rates of advance care documentation and life-sustaining treatment between Chinese American and White American ICU decedents. METHODS: In this matched retrospective decedent cohort study, we included four ICUs within a tertiary medical center located in a Chinatown neighborhood. The Chinese American cohort included adult patients during the terminal admission in the ICU with primary language identified as Chinese (Mandarin, Cantonese, Taishanese). The White American cohort was matched according to age, sex, year of death, and admitting diagnosis. RESULTS: We identified 154 decedents in each cohort. Despite similar odds on admission, Chinese American decedents had higher odds of DNR completion (OR 1.82; 95%CI 0.99-3.40) and DNI completion (OR 1.81; 95%CI, 1.07-1.57) during the terminal ICU admission. Although Chinese American decedents had similar odds of intubation (aOR 0.90; 95%CI, 0.55-1.48), a higher proportion signed a DNI after intubation (41% vs 25%). Chinese American decedents also had higher odds of CPR (aOR 2.03; 95%CI, 1.03-41.6) with three Chinese American decedents receiving CPR despite a signed DNR order (12% vs 0%). CONCLUSIONS: During terminal ICU admissions, Chinese American decedents were more likely to complete advance care documentation and to receive CPR than White American decedents. Changes in code status were more common for Chinese Americans after intubation. Further research is needed to understand these differences and identify opportunities for goal-concordant care.


Assuntos
Asiático , Unidades de Terapia Intensiva , Cuidados para Prolongar a Vida , Humanos , Masculino , Feminino , Idoso , Estudos Retrospectivos , Pessoa de Meia-Idade , Cuidados para Prolongar a Vida/estatística & dados numéricos , Documentação , População Branca , Assistência Terminal , Idoso de 80 Anos ou mais , Estados Unidos , Ordens quanto à Conduta (Ética Médica) , Diretivas Antecipadas , Planejamento Antecipado de Cuidados
16.
J Psychopathol Clin Sci ; 133(3): 285-296, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38619462

RESUMO

Gaudiani et al. (2022) presented terminal anorexia nervosa (T-AN) as a potential new specifier to the anorexia nervosa (AN) diagnosis, with criteria including (a) AN diagnosis, (b) age > 30 years, (c) previously participated in high-quality care, and (d) the clear, consistent determination by a patient with decision-making capacity that additional treatment would be futile, knowing death will result. This study's purpose was to empirically examine a subgroup of participants with AN who met the first three criteria of T-AN-and a smaller subset who also met a proxy index of the fourth criterion involving death (TD-AN)-and compare them to an adult "not terminal" anorexia nervosa (NT-AN) group and to a "not terminal" subset 30 years of age or older (NTO-AN). Patients at U.S. eating disorder treatment facilities (N = 782; T-AN: n = 51, TD-AN: n = 16, NT-AN: n = 731, NTO-AN: n = 133), all of whom met criteria for a current Diagnostic and Statistical Manual of Mental Disorders, 5th Edition diagnosis of AN, were compared regarding admission, discharge, and changes from admission to discharge on physiological indices (i.e., white blood cell counts, albumin levels, aspartate aminotransferase levels, and body mass index), as well as self-report measures (i.e., eating disorder, depression, anxiety, and obsessive-compulsive symptoms). In contrast to the tight syndromal symptom interconnections of, and inevitable spiral toward death expected for, a terminal diagnosis, results suggest substantial variability within the T-AN group and TD-AN subset, and an overall trend of improvement across physiological and self-report measures. This study thus provides some empirical evidence against the specification of the T-AN diagnosis. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Assuntos
Anorexia Nervosa , Transtornos da Alimentação e da Ingestão de Alimentos , Adulto , Humanos , Anorexia Nervosa/diagnóstico , Anorexia Nervosa/terapia , Hospitalização , Alta do Paciente , Diretivas Antecipadas
17.
Pacing Clin Electrophysiol ; 47(5): 697-701, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38597183

RESUMO

BACKGROUND: Patients ≥80 with implantable cardioverter-defibrillators (ICDs) have high rates of hospitalization and mortality, yet few have documented advance directives. We sought to determine the prevalence of advance directives in adults ≥80 years with ICDs, focusing on those with frailty and cognitive impairment. METHODS: Prospective cohort study (July 2016-May 2019) in an electrophysiology clinic. Presence of advance directives (health care proxies [HCP] and living wills [LW], or medical orders for life-sustaining treatment [MOLST]) was determined by medical record review. Frailty and cognitive impairment were screened using 4-m gait speed and Mini-Cog. RESULTS: 77 Veterans were evaluated. Mean age 84 years, 100% male, 70% frail. Overall, 52 (68%) had an HCP and 37 (48%) had a LW/MOLST. Of 67 with cognitive testing, 36% were impaired. HCP documentation was similar among frail and non-frail (69% vs. 65%). LW/MOLST was more prevalent among frail versus non-frail (52% vs. 39%). There was no difference in HCP documentation by cognitive status (67%). A LW/MOLST was more frequent for cognitively impaired versus non-impaired (50% vs. 42%). Among 19 Veterans who were frail and cognitively impaired, 14 (74%) had an HCP and 11 (58%) had a LW/MOLST. CONCLUSIONS: Most Veterans had a documented advance directive, but a significant minority did not. Simple frailty and cognitive screening tools can rapidly identify patients for whom discussion of advance directives is especially important.


Assuntos
Diretivas Antecipadas , Desfibriladores Implantáveis , Humanos , Masculino , Feminino , Idoso de 80 Anos ou mais , Estudos Prospectivos , Disfunção Cognitiva , Fragilidade
18.
Lancet Healthy Longev ; 5(5): e370-e378, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38608695

RESUMO

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.


Assuntos
Planejamento Antecipado de Cuidados , Consenso , Técnica Delphi , Demência , Cuidados Paliativos , Humanos , Planejamento Antecipado de Cuidados/organização & administração , Diretivas Antecipadas , Demência/terapia , Europa (Continente) , Política de Saúde
19.
PLoS One ; 19(3): e0294393, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38446765

RESUMO

OBJECTIVE: Complementary Health Approaches (CHA) are commonly used by children with cancer; however, a few health care providers (HCPs) inquire about the use of CHA. A standardized questionnaire could facilitate such clinical discussions. We aimed to adapt and determine the face and content validity of the "Which Health Approaches and Treatments are you using?" (WHAT) child and parent-report questionnaires in pediatric oncology. METHODS: An electronic Delphi survey that included children with cancer (8-18 years), parents, and HCPs and CHA researchers was conducted to reach consensus on the content of the WHAT questionnaires in pediatric oncology. Children and parents from the Hospital for Sick Children (SickKids), and HCPs and researchers from the International Society of Pediatric Oncology and Pediatric Complementary and Alternative Medicine Research and Education Network completed the survey. To determine the face and content validity of the questionnaires, two iterative cycles of individual interviews were conducted with purposive samples of children (8-18 years), parents, and HCPs from SickKids. RESULTS: Consensus was reached on all domains and items of the original WHAT questionnaires after one Delphi cycle (n = 61). For face and content validity testing, the first cycle of interviews (n = 19) revealed that the questionnaires were mostly comprehensive and relevant. However, the paper-based format of the original WHAT was not user-friendly, and generic items were vague and not aimed at facilitating clinical dialogues about CHA use. The WHAT questionnaires were then modified into electronic cancer-specific self- and proxy-report questionnaires including 13 and 15 items, respectively. The second cycle (n = 21) showed no need for further changes. CONCLUSIONS: The modified electronic cancer-specific WHAT questionnaires showed adequate face and content validity. The next step is to determine inter-rater reliability, construct validity, and feasibility of administration of the modified WHAT questionnaires in pediatric oncology.


Assuntos
Oncologia , Neoplasias , Criança , Humanos , Reprodutibilidade dos Testes , Diretivas Antecipadas , Consenso , Neoplasias/diagnóstico , Neoplasias/terapia
20.
J Patient Rep Outcomes ; 8(1): 28, 2024 Mar 04.
Artigo em Inglês | MEDLINE | ID: mdl-38436803

RESUMO

BACKGROUND: Quality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the relatively high prevalence of cognitive impairment amongst older people, hence proxy reporting is often utilised as the default option. Internationally, there is little evidence on the impact of proxy perspective on interrater agreement between self and proxy report. OBJECTIVES: To assess the impacts of (i) cognition level and (ii) proxy perspective on interrater agreement using a utility instrument, the Quality of Life-Aged Care Consumers (QOL-ACC). METHODS: A cross-sectional study was undertaken with aged care residents and family member proxies. Residents completed the self-report QOL-ACC, while proxies completed two proxy versions: proxy-proxy perspective (their own opinion), and proxy-person perspective (how they believe the resident would respond). Interrater agreement was assessed using quadratic weighted kappas for dimension-level data and concordance correlation coefficients and Bland-Altman plots for utility scores. RESULTS: Sixty-three residents (22, no cognitive impairment; 41, mild-to-moderate cognitive impairment) and proxies participated. In the full sample and in the mild-to-moderate impairment group, the mean self-reported QOL-ACC utility score was significantly higher than the means reported by proxies, regardless of perspective (p < 0.01). Agreement with self-reported QOL-ACC utility scores was higher when proxies adopted a proxy-person perspective. CONCLUSION: Regardless of cognition level and proxy perspective, proxies tend to rate quality of life lower than residents. Further research is needed to explore the impact of such divergences for quality assessment and economic evaluation in aged care.


Assuntos
Diretivas Antecipadas , Qualidade de Vida , Humanos , Idoso , Autorrelato , Estudos Transversais , Cognição
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