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1.
Nature ; 591(7850): 451-457, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33561864

RESUMO

All coronaviruses known to have recently emerged as human pathogens probably originated in bats1. Here we use a single experimental platform based on immunodeficient mice implanted with human lung tissue (hereafter, human lung-only mice (LoM)) to demonstrate the efficient in vivo replication of severe acute respiratory syndrome coronavirus (SARS-CoV), Middle East respiratory syndrome coronavirus (MERS-CoV) and severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), as well as two endogenous SARS-like bat coronaviruses that show potential for emergence as human pathogens. Virus replication in this model occurs in bona fide human lung tissue and does not require any type of adaptation of the virus or the host. Our results indicate that bats contain endogenous coronaviruses that are capable of direct transmission to humans. Our detailed analysis of in vivo infection with SARS-CoV-2 in human lung tissue from LoM showed a predominant infection of human lung epithelial cells, including type-2 pneumocytes that are present in alveoli and ciliated airway cells. Acute infection with SARS-CoV-2 was highly cytopathic and induced a robust and sustained type-I interferon and inflammatory cytokine and chemokine response. Finally, we evaluated a therapeutic and pre-exposure prophylaxis strategy for SARS-CoV-2 infection. Our results show that therapeutic and prophylactic administration of EIDD-2801-an oral broad-spectrum antiviral agent that is currently in phase II/III clinical trials-markedly inhibited SARS-CoV-2 replication in vivo, and thus has considerable potential for the prevention and treatment of COVID-19.


Assuntos
Tratamento Farmacológico da COVID-19 , COVID-19/prevenção & controle , Citidina/análogos & derivados , Hidroxilaminas/administração & dosagem , Hidroxilaminas/uso terapêutico , Administração Oral , Células Epiteliais Alveolares/imunologia , Células Epiteliais Alveolares/patologia , Células Epiteliais Alveolares/virologia , Animais , COVID-19/imunologia , Quimioprevenção , Quirópteros/virologia , Ensaios Clínicos Fase II como Assunto , Ensaios Clínicos Fase III como Assunto , Citidina/administração & dosagem , Citidina/uso terapêutico , Citocinas/imunologia , Células Epiteliais/virologia , Feminino , Xenoenxertos , Humanos , Imunidade Inata , Interferon Tipo I/imunologia , Pulmão/imunologia , Pulmão/patologia , Pulmão/virologia , Transplante de Pulmão , Masculino , Camundongos , Profilaxia Pós-Exposição , Profilaxia Pré-Exposição , SARS-CoV-2/imunologia , SARS-CoV-2/patogenicidade , Replicação Viral
2.
CA Cancer J Clin ; 69(6): 497-520, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31339560

RESUMO

Tools have been developed to facilitate communication and support information exchange between people diagnosed with cancer and their physicians. Patient-reported outcome measures, question prompt lists, patient-held records, tape recordings of consultations, decision aids, and survivorship care plans have all been promoted as potential tools, and there is extensive literature exploring their impact on patient outcomes. Eleven systematic reviews of studies evaluating tools to facilitate patient-physician communication were reviewed and summarized in this overview of systematic reviews. Across the systematic reviews, 87 publications reported on 84 primary studies involving 15,381 participants. Routine use of patient-reported outcome measures and feedback of results to clinicians can improve pain management, physician-patient communication, and symptom detection and control; increase utilization of supportive care; and increase patient involvement in care. Question prompt lists can increase the number of questions asked by patients without increasing consultation length and may encourage them to reflect and plan questions before the consultation. There is limited benefit in audio recording consultations or using patient-held records during consultations. Physicians should be supported by adequately resourced health services to respond effectively to the range of clinical and broader patient needs identified through the routine use of tools to facilitate communication.


Assuntos
Comunicação , Neoplasias , Relações Médico-Paciente , Encaminhamento e Consulta , Humanos , Neoplasias/diagnóstico , Neoplasias/psicologia , Neoplasias/terapia , Participação do Paciente , Medidas de Resultados Relatados pelo Paciente
3.
BMC Palliat Care ; 23(1): 89, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38566178

RESUMO

BACKGROUND: A standardized national approach to routinely assessing palliative care patients helps improve patient outcomes. However, a quality improvement program-based on person centered outcomes within palliative care is lacking in Mainland China. The well-established Australian Palliative Care Outcome Collaboration (PCOC) national model improves palliative care quality. This study aimed to culturally adapt and validate three measures that form part of the PCOC program for palliative care clinical practice in China: The PCOC Symptom Assessment Scale (PCOC SAS), Palliative Care Problem Severity Scale (PCPSS), Palliative Care Phase. METHODS: A study was conducted on cross-cultural adaptation and validation of PCOC SAS, PCPSS and Palliative Care Phase, involving translation methods, cognitive interviewing, and psychometric testing through paired assessments. RESULTS: Cross-cultural adaptation highlighted the need to strengthen the link between the patient's care plan and the outcome measures to improve outcomes, and the concept of distress in PCOC SAS. Analysis of 368 paired assessments (n = 135 inpatients, 22 clinicians) demonstrated that the PCOC SAS and PCPSS had good and acceptable coherence (Cronbach's a = 0.85, 0.75 respectively). Palliative Care Phase detected patients' urgent needs. PCOC SAS and PCPSS showed fair discriminant and concurrent validity. Inter-rater reliability was fair for Palliative Care Phase (k = 0.31) and PCPSS (k = 0.23-0.30), except for PCPSS-pain, which was moderate (k = 0.53). CONCLUSIONS: The Chinese version of PCOC SAS, PCPSS, and Palliative Care Phase can be used to assess outcomes as part of routine clinical practice in Mainland China. Comprehensive clinical education regarding the assessment tools is necessary to help improve the inter-rater reliability.


Assuntos
Comparação Transcultural , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Psicometria , Reprodutibilidade dos Testes , Sistemas Automatizados de Assistência Junto ao Leito , Austrália , Avaliação de Resultados em Cuidados de Saúde/métodos , Inquéritos e Questionários
4.
Int J Health Plann Manage ; 39(2): 380-396, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37943734

RESUMO

End of life care is an essential part of the role of Australian aged care homes (ACHs). However, there is no national framework to support aged care staff in systematically identifying residents with palliative care needs or to routinely assess, respond to, and measure end of life needs. The Palliative Care Outcomes Collaboration (PCOC) is a national outcomes and benchmarking programme which aims to systematically improve palliative care for people who are approaching the end of life, and for their families and carers. The PCOC Wicking Model for Residential Aged Care was developed and piloted in four Australian ACHs. This paper reports on the qualitative findings from semi-structured interviews and focus groups conducted with ACH staff (N = 37) to examine feasibility. Thematic analysis identified three overarching themes about the pilot: (i) processes to successfully prepare and support ACHs; (ii) appropriateness of PCOC tools for the ACH setting; and (iii) realised and potential benefits of the model for ACHs. The lessons presented valuable insights to refine the PCOC Wicking Model and enrich understanding of the potential challenges and solutions for implementing similar programs within ACHs in future. The results suggest that key to successfully preparing ACHs for implementation of the PCOC Wicking Model is an authentic and well-paced collaborative approach with ACHs to ensure the resources, structures and systems are in place and appropriate for the setting. The PCOC Wicking Model for Residential Aged Care is a promising prototype to support ACHs in improving palliative and end of life care outcomes for residents and their carers.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Idoso , Austrália , Pessoal de Saúde , Morte
5.
Appl Nurs Res ; 76: 151765, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38641377

RESUMO

OBJECTIVES: Drawing on findings from a qualitative study that aimed to explore the knowledge and attitudes of nurses from culturally and linguistically diverse (CALD) backgrounds about voluntary assisted dying (VAD). The study also aimed to identify the strategies that assist nurses in their readiness and preparation for exposure to VAD. This paper reports on the educational content and strategies that could assist nurses from CALD backgrounds to be better prepared when they encounter VAD requests. BACKGROUND: Around the world, healthcare professionals have roles to play in caring for patients requesting voluntary assisted dying. Nurses, particularly those from diverse geographic and clinical settings, have voiced inadequate knowledge and understanding about voluntary assisted dying. DESIGN: A qualitative descriptive approach was undertaken. METHODS: Data collection involved one focus group and 16 in-depth interviews. A total of 21 nurses from CALD backgrounds were recruited from one Australian state. Thematic analysis was conducted to interpret the data. FINDINGS: Nurses identified their knowledge gaps and specified the need for education and workplace training on VAD, its legal and ethical aspects, clarity on their role, communication techniques and how VAD intersects with their practice. They suggested various teaching strategies that could prepare nurses to work safely and confidently in a clinical environment where voluntary assisted dying is an option for patients. CONCLUSION: Given the high number of nurses from diverse backgrounds working in the Australian health sector, these nurses need to be fully prepared to care for patients requesting VAD.


Assuntos
Suicídio Assistido , Humanos , Austrália , Pessoal de Saúde , Grupos Focais , Pesquisa Qualitativa
6.
Indian J Palliat Care ; 29(1): 15-27, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36846282

RESUMO

The demand for palliative care (PC) is ever-increasing globally. The emergence of COVID-19 pandemic has further accelerated the need for PC. In the lower-income countries (LICs), where PC need is highest, PC, the most humane, appropriate and realistic approach to care for patients and families affected by life-limiting illness, is minimal or non-existent. Recognising the disparity between high, middle and LICs, the World Health Organization (WHO) has recommended public health strategies for PC within the socioeconomic, cultural and spiritual contexts of individual countries. This review aimed to: (i) identify PC models in the LICs utilising public health strategies and (ii) characterise how social, cultural and spiritual components were integrated into these models. This is an integrative literature review. Thirty-seven articles were included from a search of four electronic databases - Medline, Embase, Global Health and CINAHL. Literature, both empirical and theoretical literature, published in English from January 2000 to May 2021 that mentioned PC models/services/programmes integrating public health strategies in the LICs were included in the study. A number of LICs utilised public health strategies to deliver PC. One-third of the selected articles highlighted the importance of integrating sociocultural and spiritual components into PC. Two main themes - WHO-recommended public health framework and sociocultural and spiritual support in PC and five subthemes - (i) suitable policies; (ii) availability and accessibility of essential drugs; (iii) PC education for health professionals, policymakers and the public; (iv) implementation of PC at all levels of healthcare and (v) sociocultural and spiritual components, were derived. Despite embracing the public health approach, many LICs encountered several challenges in integrating all four strategies successfully.

7.
J Adv Nurs ; 78(1): 142-153, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34252213

RESUMO

AIMS: Hyperactive delirium (HD) is a common and distressing symptom among palliative care patients. This study aimed to describe the characteristics of HD and associated symptoms among palliative care inpatients and evaluate relationships between HD development and symptom trajectories in this population. DESIGN: A retrospective study was conducted. METHODS: A retrospective review of medical records was conducted for all patients who died in a large Australian specialist palliative care unit between 1 January and 31 December 2019. Patients were assessed daily using the Symptoms Assessment Scale (SAS) and Palliative Care Problem Severity Scale (PCPSS). Multilevel models were used to estimate the differences in symptoms trajectories in the last 7 days of life between the two groups. RESULTS: Of the 501 included patients, 64.5% (323) had an episode of HD. For 30% (95) of patients, HD occurred prior to admission. Compared with patients without HD, those with HD had significantly higher odds ratios (ORs) for four of the seven SAS symptoms (sleep problems, appetite, fatigue and pain; OR range: 1.94-4.48, p < .05), and all four PCPSS items (OR range: 2.00-3.00, p < .05) in the last week of life. CONCLUSIONS: Palliative care inpatients commonly experience HD in their last week of life. There are higher levels of symptom distress, complexity, psychological concerns and family/carer concerns among patients with HD compared with those without HD. IMPACT: The high prevalence of HD, and its association with higher levels of symptom distress, highlights the importance of routine screening and optimal management for HD among palliative care patients. Given the widely recognized challenges facing palliative care professionals in assessment and management of delirium, provision of relevant training among these professionals is recommended.


Assuntos
Delírio , Cuidados Paliativos , Austrália , Humanos , Pacientes Internados , Estudos Retrospectivos
8.
Eur J Cancer Care (Engl) ; 30(1): e13331, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33111485

RESUMO

OBJECTIVES: To (a) compare palliative care needs of lung cancer patients on their final admission to community-based and inpatient palliative care services; and (b) explore whether and how these care needs affect their utilisation of different palliative care services in the last days of life. METHODS: Descriptive study involving 17,816 lung cancer patients who received the last episode of palliative care from specialist services and died between 1 January 2013 and 31 December 2018. RESULTS: Both groups of patients admitted to community-based and inpatient palliative care services generally experienced relatively low levels of symptom distress, but high levels of functional impairment and dependency. "Unstable" versus "stable" palliative care phase (Odds ratio = 11.66; 95% Confidence Interval: 9.55-14.24), poorer functional outcomes and severe levels of distress from many symptoms predicted greater likelihood of use of inpatient versus community-based palliative care. CONCLUSIONS: Most inpatient palliative care admissions are not associated with high levels of symptom severity. To extend the period of home care and rate of home death for people with lung cancer, additional investment is required to improve their access to sufficiently skilled palliative care staff, multi-disciplinary teams and 24-hour home support in community settings.


Assuntos
Serviços de Assistência Domiciliar , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias Pulmonares , Assistência Terminal , Humanos , Neoplasias Pulmonares/terapia , Cuidados Paliativos
9.
Int J Qual Health Care ; 33(2)2021 May 19.
Artigo em Inglês | MEDLINE | ID: mdl-33909051

RESUMO

BACKGROUND: Implementation of routinely collected patient-reported outcome measures (PROMs) ensures patients' priorities are at the forefront of care planning and helps to standardize approaches to quality improvement. In palliative care, barriers to PROMs are widely known but what are not understood are the clinical and care settings in which patients are more likely to report and when proxy reporting is needed. OBJECTIVE: To examine the incidence of patient-reported symptom distress compared to the incidence of proxy reporting in palliative care and influencing factors. METHODS: A national observational study using routinely collected PROMs data with influencing factors investigated by logistic regression modelling. Participants were patients with an advanced life-limiting illness receiving palliative care in an inpatient or a community healthcare setting in Australia. RESULTS: Sixteen thousand one hundred and fifty-eight reports of symptom distress were collected from 1117 patients seen by 21 palliative care services. The majority of respondents were diagnosed with cancer (76%), were older (≥65 years, 72%) and had nominated English as their first language (88%). The majority of symptom distress reports were completed by patients (61%). The odds of a patient providing a self-report where grater when they were receiving community versus inpatient palliative care (odds ratio (OR): 3.0; 95% confidence interval (CI): 2.25-4.01), for patients diagnosed with malignant versus non-malignant disease (OR 1.7; 95% CI: 1.26-2.31), and for those who required an urgent change in their care plan versus those whose symptoms and problems were adequately managed (OR: 1.38; 95% CI: 1.04-1.83). CONCLUSION: Three factors are associated with an increased likelihood of patient versus proxy reporting in palliative care: healthcare setting, diagnosis, and the acuity and urgency of the patient's clinical needs. PROMs are feasible in most clinical scenarios in palliative care, including when an urgent clinical response is required.


Assuntos
Cuidados Paliativos , Medidas de Resultados Relatados pelo Paciente , Dados de Saúde Coletados Rotineiramente , Avaliação de Sintomas , Austrália , Feminino , Humanos , Masculino , Procurador
10.
BMC Palliat Care ; 20(1): 8, 2021 Jan 09.
Artigo em Inglês | MEDLINE | ID: mdl-33422058

RESUMO

BACKGROUND: Palliative care improves the quality of lives of patients and families affected by advanced illnesses through the prevention and relief of suffering. While palliative care is well established in developed countries, it is inadequate or non-existent in most developing countries. Palliative care is an emerging concept in Bhutan, a tiny Himalayan Kingdom. A small community palliative care service is available in the national referral hospital with three dedicated inpatient palliative care beds. This study explored the needs for palliative care among patients diagnosed with advanced illnesses and is a component of a larger project aimed to inform a suitable palliative care model for the country. METHODS: This is a cross-sectional descriptive study. A survey, using a structured questionnaire including the EORTC QLQ-C30, was carried out among patients with advanced illness in hospitals, primary care units and communities across the country. Purposeful and snowball sampling strategies were used to recruit study participants. RESULTS: Seventy (76%), out of 93 eligible patients, agreed to participate in the survey. Participants reported low to moderate scores on physical, role, emotional, cognitive and social functioning, a moderate score for the global health/ quality of life scale and moderately high (worse) scores in symptoms including fatigue, pain, insomnia, loss of appetite and the financial impact from the disease. CONCLUSIONS: The symptom burden experienced by patients affected by advanced illnesses demonstrates the need for palliative care in Bhutan. These findings will help inform the development of a public health-focused palliative care model, modified to the Bhutanese context, as recommended by the World Health Organization.


Assuntos
Infecções por HIV/fisiopatologia , Avaliação das Necessidades , Neoplasias/fisiopatologia , Cuidados Paliativos , Qualidade de Vida , Insuficiência Renal Crônica/fisiopatologia , Tuberculose Resistente a Múltiplos Medicamentos/fisiopatologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Pessoal Técnico de Saúde , Butão , Cognição , Feminino , Estado Funcional , Infecções por HIV/psicologia , Infecções por HIV/terapia , Humanos , Hepatopatias Alcoólicas/fisiopatologia , Hepatopatias Alcoólicas/psicologia , Hepatopatias Alcoólicas/terapia , Pneumopatias/fisiopatologia , Pneumopatias/psicologia , Pneumopatias/terapia , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Enfermeiras e Enfermeiros , Médicos , Funcionamento Psicossocial , Insuficiência Renal Crônica/psicologia , Insuficiência Renal Crônica/terapia , Interação Social , Traumatismos da Medula Espinal/fisiopatologia , Traumatismos da Medula Espinal/psicologia , Traumatismos da Medula Espinal/terapia , Doente Terminal , Tuberculose Resistente a Múltiplos Medicamentos/psicologia , Tuberculose Resistente a Múltiplos Medicamentos/terapia , Adulto Jovem
11.
J Gen Intern Med ; 35(12): 3572-3580, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33037591

RESUMO

BACKGROUND: Goals of care (GOC) is a communication and decision-making process that occurs between a clinician and a patient (or surrogate decision-maker) during an episode of care to facilitate a plan of care that is consistent with the patient's preferences and values. Little is known about patients' experiences of these discussions. OBJECTIVE: This study explored patients' perspectives of the GOC discussion in the hospital setting. DESIGN: An explorative qualitative design was used within a social constructionist framework. PARTICIPANTS: Adult patients were recruited from six Australian hospitals across two states. Eligible patients had had a GOC discussion and they were identified by the senior nurse or their doctor for informed consent and interview. APPROACH: Semi-structured individual or dyadic interviews (with the carer/family member present) were conducted at the bedside or at the patient's home (for recently discharged patients). Interviews were audio-recorded and transcribed verbatim. Data were analysed for themes. KEY RESULTS: Thirty-eight patient interviews were completed. The key themes identified were (1) values and expectations, and (2) communication (sub-themes: (i) facilitators of the conversation, (ii) barriers to the conversation, and (iii) influence of the environment). Most patients viewed the conversation as necessary and valued having their preferences heard. Effective communication strategies and a safe, private setting were facilitators of the GOC discussion. Deficits in any of these key elements functioned as a barrier to the process. CONCLUSIONS: Effective communication, and patients' values and expectations set the stage for goals of care discussions; however, the environment plays a significant role. Communication skills training and education designed to equip clinicians to negotiate GOC interactions effectively are essential. These interventions must also be accompanied by systemic changes including building a culture supportive of GOC, clear policies and guidelines, and champions who facilitate uptake of GOC discussions.


Assuntos
Comunicação , Planejamento de Assistência ao Paciente , Adulto , Austrália , Família , Hospitais , Humanos , Pesquisa Qualitativa
12.
J Sex Med ; 17(7): 1326-1358, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32331967

RESUMO

BACKGROUND: Greater understanding of patient-reported barriers and facilitators to seeking and accessing sexual health services will help formulate strategies to assist gynecologic and breast cancer patients to overcome obstacles to accessing sexual health support because they typically do not seek sexual education and/or treatment when confronted with sexual concerns. AIM: The objectives of this systematic review were to (i) explore the patient-reported barriers to seeking and accessing support for sexual problems in gynecologic and breast cancer survivors, and (ii) identify strategies used to successfully overcome the barriers to accessing sexual health information and/or treatment. MAIN OUTCOME MEASURES: The main outcome measures included factors that prevent and/or facilitate gynecologic and breast cancer patients with sexual concerns seeking and accessing sexual health-related services. METHODS: Systematic searches of major electronic databases (Ovid MEDLINE, PsycINFO, CINAHL, ProQuest, and Chinese database CNKI) from January 2009 to July 2019 were used to identify the barriers and facilitators to seeking sexual education/treatment from the perspective of gynecologic and breast cancer survivors. A narrative synthesis was conducted. RESULTS: 20 studies met the inclusion criteria including 12 qualitative, 6 quantitative, and 2 mixed methods studies. 4 interconnected themes were derived from 13 subthemes relating to the barriers/facilitators to seeking and accessing sexual health support. The most common barriers were embarrassment/discomfort in discussing sexual concerns, perceived discomfort of healthcare providers in discussing sexual issues, limitations of the healthcare system to address sexual problems, and the multidimensional nature of sexuality. Help-seeking for sexual health concerns was facilitated by: (i) oncology health professionals initiating and conducting open, honest discussions around sexual concerns with patients; (ii) the availability of information in multiple forms; and (iii) appropriate timing of information provision according to women's preferences. CLINICAL IMPLICATIONS: Oncology health professionals need to develop an open, honest, accepting communication style and be accessible to women with cancer and their partners within healthcare systems. STRENGTHS & LIMITATIONS: The systematic review was conducted in accordance with guidelines. Variability in the primary aims and outcomes of the included studies precluded a meta-analysis. CONCLUSIONS: Training programs for providers of oncology care should enhance their knowledge of sexual issues in gynecologic and/or breast cancer, enhance their communication skills with patients, and improve their ability to consult or refer patients to psycho-oncologists or other mental health professionals. Dai Y, Cook OY, Yeganeh L, et al. Patient-Reported Barriers and Facilitators to Seeking and Accessing Support in Gynecologic and Breast Cancer Survivors With Sexual Problems: A Systematic Review of Qualitative and Quantitative Studies. J Sex Med 2020;17:1326-1358.


Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias da Mama/complicações , Neoplasias da Mama/terapia , Feminino , Humanos , Medidas de Resultados Relatados pelo Paciente , Pesquisa Qualitativa , Comportamento Sexual
13.
Aust J Rural Health ; 28(6): 588-602, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33382474

RESUMO

OBJECTIVE: The aim of this qualitative analysis was to determine patients' perceptions of the impact of cancer-related costs. DESIGN: A qualitative inductive content analysis of the comment sections of surveys completed by participants in a cross-sectional study of cancer-related expenses. SETTING: Residents of 4 regional/rural and 2 outer metropolitan areas in Western Australia. PARTICIPANTS: Adults diagnosed with breast, prostate, colorectal or lung cancer participated in the study between 1 April 2014 and 31 April 2017. MAIN OUTCOME MEASURES: This study identified the key factors contributing to the cost experiences reported by the participants. RESULTS: Participant comments were organised into 4 main categories perceived to incorporate the key factors contributing to the cost experiences reported by 300 participants: 1) health care system factors (access to care in the public or private sector, availability of services close to home, gap payments, cost of travel) 2) financial factors (impact of cancer on employment, ability to work, and career; and strategies for improving financial difficulties) 3) social and community support provided by the government and not-for-profit organisations and 4) understanding of the health care system. CONCLUSION: There is a need for cost transparency, initiatives for no- or low-fee billing providers, access to care close to home, development of financial assistance schemes and return to work programs to alleviate the financial hardship experienced by cancer patients and their families.


Assuntos
Gastos em Saúde , Neoplasias , Adulto , Efeitos Psicossociais da Doença , Estudos Transversais , Acessibilidade aos Serviços de Saúde , Humanos , Neoplasias/economia , População Rural , Austrália Ocidental
14.
Support Care Cancer ; 27(12): 4575-4585, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30927112

RESUMO

PURPOSE: Communication in cancer care is multidimensional and may affect patient treatment decision-making and quality of life. This study examined cancer patients' perceptions of the communication with their cancer specialists and explored its impact on the care they received and the financial burden they experienced. METHODS: Semi-structured telephone interviews were conducted with 20 rural and 20 outer metropolitan Western Australians diagnosed with breast, lung, prostate or colorectal cancer. Thematic analysis using a phenomenological approach was undertaken to derive key themes regarding the communication experiences of the participants. RESULTS: Four main themes emerged: information context, communication about treatment options and treatment providers, communication about costs of treatment and impact of communication on continuity of care. The quality of the communication experienced by participants was variable and in many cases sub-optimal. This affected their ability to undertake well-informed decisions regarding treatment and providers and led to substantial out-of-pocket expenses for several participants. Whilst participants differed in their information needs and expectations, most participants trusted clinicians' treatment recommendations. CONCLUSIONS: Our results raise concerns about the quality of communication cancer patients receive during treatment and the repercussions for their treatment decisions and out-of-pocket expenses. Clear treatment and cost communication could empower patients in choosing treatment and providers. However, these findings suggest patients must remain vigilant during consultations and discuss available treatment pathways and their financial dimension to avoid costly treatments or missing out on available financial aid.


Assuntos
Gastos em Saúde , Neoplasias/economia , Neoplasias/psicologia , Relações Médico-Paciente , Idoso , Comunicação , Tomada de Decisões , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Oncologistas/economia , Oncologistas/psicologia , Pesquisa Qualitativa , Qualidade de Vida , População Rural , Confiança , Austrália Ocidental
15.
BMC Palliat Care ; 18(1): 51, 2019 Jun 25.
Artigo em Inglês | MEDLINE | ID: mdl-31238934

RESUMO

BACKGROUND: Few studies have specifically assessed the scope, nature and challenges of palliative and end-of-life care in rural general practice. These knowledge gaps limit the development of evidence-based policies and services for patients in the last months of life. This study aimed to explore the perspectives of general practitioners (GPs) and other stakeholders on rural GPs' involvement and challenges in providing palliative and end-of-life care in regional Australia. METHODS: A qualitative study involving five focus groups with 26 GPs based in rural/regional Western Australia together with 15 individual telephone interviews with four GPs and 11 other stakeholders involved in end-of-life care across Australia. RESULTS: The rural GPs' central role in end-of-life care was recognized by the majority of participants but multiple challenges were also identified. Some challenges were comparable to those found in urban settings but others were more pronounced, including resource limitations and lack of training. Inappropriate payment models discouraged GPs' involvement in some aspects of end-of-life care, such as case conferences and home visits. Compared to GPs in urban settings, those in rural/regional communities often reported closer doctor-patient relationships and better care integration and collaboration. These positive aspects of care could be further developed to enhance service provision. Our study highlighted the importance of regular interactions with other professionals and patients in providing end-of-life care, but many GPs and other stakeholders found such interactions more challenging than the more "technical" aspects of care. CONCLUSIONS: Rural/regional GPs appear to be disproportionately affected by inappropriate payment models and limited resources, but may benefit from closer doctor-patient relationships and better care integration and collaboration relative to urban GPs. Systematic collection of empirical data on GP management at end-of-life is required to build on these strengths and address the challenges.


Assuntos
Medicina Geral/tendências , Clínicos Gerais/psicologia , População Rural , Assistência Terminal/métodos , Adulto , Atitude do Pessoal de Saúde , Feminino , Grupos Focais/métodos , Clínicos Gerais/tendências , Visita Domiciliar/tendências , Humanos , Masculino , Pessoa de Meia-Idade , Padrões de Prática Médica/normas , Padrões de Prática Médica/tendências , Pesquisa Qualitativa , Assistência Terminal/tendências , Austrália Ocidental
16.
Support Care Cancer ; 26(10): 3543-3552, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-29704109

RESUMO

PURPOSE: Out-of-pocket expenses (OOPE) can have a significant impact on patients' experiences of cancer treatment. This cross-sectional study sought to quantify the OOPEs experienced by rural cancer patients in Western Australia (WA), and determine factors that contributed to higher OOPE. METHODS: Four hundred people diagnosed with breast, lung, colorectal or prostate cancer who resided in selected rural regions of WA were recruited through the WA Cancer Registry and contacted at least 3 months after diagnosis to report the medical OOPE (such as surgery or chemotherapy, supportive care, medication and tests) and non-medical OOPE (such as travel costs, new clothing and utilities) they had experienced as a result of accessing and receiving treatment. Bootstrapped t tests identified demographic, financial and treatment-related factors to include in multivariate analysis, performed using log-linked generalised linear models with gamma distribution. RESULTS: After a median 21 weeks post-diagnosis, participants experienced an average OOPE of AU$2179 (bootstrapped 95% confidence interval $1873-$2518), and 45 (11%) spent more than 10% of their household income on these expenses. Participants likely to experience higher total OOPE were younger than 65 years (p = 0.008), resided outside the South West region (p = 0.007) and had private health insurance (PHI) (p < 0.001). CONCLUSIONS: Rural WA cancer patients experience significant OOPE following their diagnosis. The impact these expenses have on patient wellbeing and their treatment decisions need to be further explored.


Assuntos
Neoplasias/economia , Neoplasias/epidemiologia , População Rural , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Gastos em Saúde/estatística & dados numéricos , Humanos , Seguro Saúde/economia , Seguro Saúde/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Sistema de Registros , População Rural/estatística & dados numéricos , Fatores Socioeconômicos , Austrália Ocidental/epidemiologia
17.
Med Sci Monit ; 24: 582-589, 2018 Jan 29.
Artigo em Inglês | MEDLINE | ID: mdl-29377878

RESUMO

BACKGROUND Endobronchial ultrasound-guided transbronchial needle aspiration (EBUS-TBNA) and guide sheath (EBUS-GS) are gaining popularity for diagnosis and staging of lung cancer compared to CT-guided transthoracic needle aspiration (CT-TTNA), blind fiber-optic bronchoscopy, and mediastinoscopy. This paper aimed to examine predictors of higher costs for diagnosing and staging lung cancer, and to assess the effect of EBUS techniques on hospital cost. MATERIAL AND METHODS Hospital costs for diagnosis and staging of new primary lung cancer patients presenting in 2007-2008 and 2010-2011 were reviewed retrospectively. Multiple linear regression was used to determine relationships with hospital cost. RESULTS We reviewed 560 lung cancer patient records; 100 EBUS procedures were performed on 90 patients. Higher hospital costs were associated with: EBUS-TBNA performed (p<0.0001); increasing inpatient length of stay (p<0.0001); increasing number of other surgical/diagnostic procedures (p<0.0001); whether the date of management decision fell within an inpatient visit (p<0.0001); and if the patient did not have a CT-TTNA, then costs increased as the number of imaging events increased (interaction p<0.0001). Cohort was not significantly related to cost. Location of the procedure (outside vs. inside theater) was a predictor of lower one-day EBUS costs (p<0.0001). Cost modelling revealed potential cost saving of $1506 per EBUS patient if all EBUS procedures were performed outside rather than in the theater ($66,259 per annum). CONCLUSIONS EBUS-TBNA only was an independent predictor of higher cost for diagnosis and staging of lung cancer. Performing EBUS outside compared to in the theater may lower costs for one-day procedures; potential future savings are considerable if more EBUS procedures could be performed outside the operating theater.


Assuntos
Broncoscopia/economia , Custos e Análise de Custo , Endossonografia/economia , Neoplasias Pulmonares/diagnóstico , Neoplasias Pulmonares/patologia , Estudos de Coortes , Custos Hospitalares , Humanos , Pacientes Internados , Modelos Lineares , Neoplasias Pulmonares/economia , Modelos Teóricos , Estadiamento de Neoplasias
18.
BMC Palliat Care ; 17(1): 130, 2018 Dec 22.
Artigo em Inglês | MEDLINE | ID: mdl-30579330

RESUMO

BACKGROUND: Rapid effective responsiveness to patient needs is pivotal to high quality palliative care. Aboriginal and Torres Strait Islander (Indigenous) people are susceptible to life-limiting illnesses at younger ages than other Australians and experience inequity of health service provision. The Palliative Care Outcomes Collaboration collects Australia-wide health service data on patient care, and has established performance benchmarks for specialist palliative care services. We investigated whether the benchmark for timely commencement of palliative care episodes (occurrence of delay >1 day after being designated 'ready for care' in <10% instances) is being met for Indigenous Australians in participating services. Additionally, we investigated the association between identification as Indigenous and delay. METHODS: Using multi-jurisdictional Palliative Care Outcomes Collaboration data, this cross-sectional analytical study investigated all episodes of care (n = 84,238) provided to patients ≥18 years (n = 61,073: Indigenous n = 645) in hospital and community settings commenced and completed during the period 01/07/2013-30/06/2015. Proportions of episodes resulting in delay were determined. Crude and adjusted odds of delay among Indigenous compared with non-Indigenous patients were investigated using multiple logistic regression, with missing data handled by multiple imputation. RESULTS: The benchmark was met for both Indigenous and non-Indigenous patients (delay in 8.3 and 8.4% episodes respectively). However, the likelihood of delay was modestly higher in episodes provided to Indigenous than non-Indigenous patients (adjusted odds ratio [aOR], 1.41; 95% confidence interval [CI] 1.07-1.86). Excess delay among Indigenous patients was accentuated in first episodes (aOR, 1.53; 95% CI 1.14-2.06), in patients aged < 65 years (aOR, 1.66; 95% CI 1.14-2.41), and among those residing in Inner Regional areas (aOR, 1.97; 95% CI 1.19-3.28), and also approached significance among those in outer regional, remote and very remote areas collectively (aOR, 1.72; CI 0.97-3.05). CONCLUSIONS: Although the timeliness benchmark is being met for Indigenous Australians in palliative care, they may experience delayed initiation of care episodes, particularly if younger, and especially at first encounter with a service. Qualitative research is required to explore determinants of delay in initiating palliative care episodes. The timeliness of initial referral for specialist palliative care in this population remains to be determined.


Assuntos
Serviços de Saúde do Indígena/estatística & dados numéricos , Cuidados Paliativos/normas , Grupos Populacionais , Tempo para o Tratamento , Idoso , Austrália , Benchmarking , Estudos Transversais , Feminino , Serviços de Saúde do Indígena/normas , Disparidades em Assistência à Saúde , Humanos , Masculino
19.
Appl Nurs Res ; 40: 45-50, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29579498

RESUMO

AIM: This study sought to identify clinical, demographic and service-related factors associated with psychological distress amongst outpatient chemotherapy patients. BACKGROUND: Distress in cancer patients leads to increased risk of psychological comorbidity, contributing to sub-optimal treatment adherence and potentially leading to poorer health outcomes. Screening and recognition of distress and risk factors is an important aspect of holistic care within a multidisciplinary team environment. METHODS: Data were obtained via survey and chart review of ambulatory chemotherapy patients at three public tertiary referral hospitals in Perth, Western Australia. The DASS-21 was used to screen for psychological distress. Regression analyses were used to assess the relationship between distress and a range of cancer, socioeconomic and treatment factors. RESULTS: Patients with a Karnofsky Performance Score≤80 (OR 3.8, 95% CI [1.7, 78.7]) and average waiting time (between oncology outpatient appointment and commencement of chemotherapy infusion) >60min (OR 2.4, 95% CI [1.04, 5.5]) were at increased risk of moderate-severe distress. Patients with a household income between $AU 50-75,000 p.a. had a lower risk of distress compared to <$25,000 p.a. (OR 0.05, 95% CI [0.01, 0.52]). On sub-scale analysis, depression and anxiety contributed more to overall distress than the stress subscales. CONCLUSIONS: Performance status, waiting times and household income were key predictors of distress. Findings could assist clinicians to identify higher-risk population subsets that could benefit from targeted screening and additional psychological and social work support. Findings could also assist administrators to consider the contribution of modifiable factors such as waiting times to patient distress.


Assuntos
Antineoplásicos/efeitos adversos , Antineoplásicos/uso terapêutico , Ansiedade/psicologia , Transtorno Depressivo/psicologia , Neoplasias/tratamento farmacológico , Pacientes Ambulatoriais/psicologia , Estresse Psicológico/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/induzido quimicamente , Transtorno Depressivo/induzido quimicamente , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estresse Psicológico/induzido quimicamente , Inquéritos e Questionários , Centros de Atenção Terciária , Austrália Ocidental
20.
Palliat Support Care ; 16(2): 198-208, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-28357973

RESUMO

ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. OBJECTIVE: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. METHOD: Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. RESULTS: Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). SIGNIFICANCE OF RESULTS: While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.


Assuntos
Cuidadores/psicologia , Cuidados Paliativos/normas , Percepção , Satisfação Pessoal , Idoso , Austrália , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Fatores Socioeconômicos , Inquéritos e Questionários
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