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Aboriginal Australians experience a high prevalence of chronic obstructive pulmonary disease (COPD), with high rates of potentially preventable hospitalisations. However, little is known about Aboriginal peoples' experiences of living with COPD and how they navigate health care systems. This study used thematic analysis and Aboriginal methodology to explore Aboriginal peoples' lived experiences of COPD, their health care journey from receiving a diagnosis of COPD to the clinical management, and the impact of COPD on their daily lives. We conducted in-depth semi-structured interviews over a 6-month period with 18 Aboriginal adults diagnosed with COPD from four Aboriginal Community Controlled Health Services (ACCHS) in New South Wales, Australia. Reflexive thematic analysis was employed to ensure rigour. The findings revealed deeply personal and reflective stories shaped by historical, social, and cultural realities of Aboriginal peoples living with COPD. Four themes were identified characterising their experiences. Based on the findings, the following guidance is provided on future COPD care for Aboriginal peoples: Better alignment of existing COPD management with Aboriginal peoples' cultural contexts and perspectives to improve access to culturally safe care; Increased funding for ACCHS to enhance COPD management, such as early detection through case finding and access to ACCHS-led pulmonary rehabilitation; Engaging family members in COPD management and providing culturally centred COPD education that facilitates discussions and builds health literacy and self-management skills; Implementing health promotion initiatives to increase awareness and counteract fear and shame to improve early COPD detection.
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BACKGROUND: Electronic health records and other clinical information systems have crucial roles in health service delivery and are often utilised for patient care as well as health promotion and research. Government agencies and healthcare bodies are gradually shifting the focus on how these data systems can be harnessed for secondary uses such as reflective practice, professional learning and continuing professional development. Whilst there has been a presence in research around the attitudes of health professionals in employing clinical information systems to support their reflective practice, there has been very little research into consumer attitudes towards these data systems and how they would like to interact with such structures. The study described in this article aimed to address this gap in the literature by exploring community perspectives on the secondary use of Electronic Health Data for health professional learning and practice reflection. METHODS: A qualitative methodology was used, with data being collected via semi-structured interviews. Interviews were conducted via phone and audio recordings, before being transcribed into text for analysis. Reflective thematic analysis was undertaken to analyse the data. RESULTS: Fifteen Australians consented to participate in an interview. Analysis of interview data generated five themes: (1) Knowledge about health professional registration and professional learning; (2) Secondary uses of Electronic Health Data; (3) Factors that enable the use of Electronic Health Data for health professional learning; (4) Challenges using Electronic Health Data for health professional learning and (5) Expectations around consent to use Electronic Health Data for health professional learning. CONCLUSIONS: Australians are generally supportive of health professionals using Electronic Health Data to support reflective practice and learning but identify several challenges for data being used in this way.
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Registros Electrónicos de Salud , Investigación Cualitativa , Humanos , Adulto , Femenino , Masculino , Persona de Mediana Edad , Australia , Personal de Salud , Actitud del Personal de Salud , Anciano , Reflexión CognitivaRESUMEN
OBJECTIVES: The study explored the perceived impacts of COVID-19 and its associated policies and social restrictions on health, self-management and access to healthcare. DESIGN: Cross-sectional observational (online survey) and qualitative study (semi-structured interviews and thematic analysis). SETTING: Australia. PARTICIPANTS: People with self-reported cardiovascular disease (CVD) and/or risk factors. RESULTS: Survey responses were collected from 690 participants (43.8% women, 40.1% over 65 years). Participants reported that their heart health had been affected by the pandemic (26.3%), were less likely to exercise (47.1%), have a healthy diet (25.9%) and take medications (9.4%). A large proportion were admitted to hospital (46.2%) and presented to the emergency department (40.6%). Difficulties in accessing healthcare providers (53.2%) and use of telemedicine (63.6%) were reported. We conducted 16 semi-structured interviews and identified five key themes: adding burden in seeking medical care, impediments in accessing a readjusted health system, exacerbating vulnerability and distress, coping with self-management and adapting to telehealth. CONCLUSIONS: Patients with CVD expressed an additional burden in seeking medical care and difficulties navigating a readjusted health system during the COVID-19 pandemic. Associated policies and access issues heightened vulnerabilities and distress, making self-management of health difficult for patients with CVD.
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COVID-19 , Enfermedades Cardiovasculares , Accesibilidad a los Servicios de Salud , Investigación Cualitativa , Humanos , COVID-19/epidemiología , Femenino , Masculino , Enfermedades Cardiovasculares/epidemiología , Estudios Transversales , Australia/epidemiología , Persona de Mediana Edad , Anciano , SARS-CoV-2 , Adulto , Telemedicina/estadística & datos numéricos , Automanejo , Aceptación de la Atención de Salud/estadística & datos numéricos , Pandemias , Adaptación PsicológicaRESUMEN
The health sector is highly digitized, which is enabling the collection of vast quantities of electronic data about health and well-being. These data are collected by a diverse array of information and communication technologies, including systems used by health care organizations, consumer and community sources such as information collected on the web, and passively collected data from technologies such as wearables and devices. Understanding the breadth of IT that collect these data and how it can be actioned is a challenge for the significant portion of the digital health workforce that interact with health data as part of their duties but are not for informatics experts. This viewpoint aims to present a taxonomy categorizing common information and communication technologies that collect electronic data. An initial classification of key information systems collecting electronic health data was undertaken via a rapid review of the literature. Subsequently, a purposeful search of the scholarly and gray literature was undertaken to extract key information about the systems within each category to generate definitions of the systems and describe the strengths and limitations of these systems.
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Sistemas de Información en Salud , Humanos , Registros Electrónicos de Salud/clasificaciónRESUMEN
A specific splicing isoform of RNASET2 is associated with worse oncologic outcomes in clear cell renal cell carcinoma (ccRCC). However, the interplay between wild-type RNASET2 and its splice variant and how this might contribute to the pathogenesis of ccRCC remains poorly understood. We sought to better understand the relationship of RNASET2 in the pathogenesis of ccRCC and the interplay with a pathogenic splicing isoform (RNASET2-SV) and the tumor immune microenvironment. Using data from The Cancer Genome Atlas and Clinical Proteomic Tumor Analysis Consortium, we correlated clinical variables to RNASET2 expression and the presence of a specific RNASET2-SV. Immunohistochemical staining with matched RNA sequencing of ccRCC patients was then utilized to understand the spatial relationships of RNASET2 with immune cells. Finally, in vitro studies were performed to demonstrate the oncogenic role of RNASET2 and highlight its potential mechanisms. RNASET2 gene expression is associated with higher grade tumors and worse overall survival in The Cancer Genome Atlas cohort. The presence of the RNASET2-SV was associated with increased expression of the wild-type RNASET2 protein and epigenetic modifications of the gene. Immunohistochemical staining revealed increased intracellular accumulation of RNASET2 in patients with increased RNA expression of RNASET2-SV. In vitro experiments reveal that this accumulation results in increased cell proliferation, potentially from altered metabolic pathways. RNASET2 exhibits a tumor-promoting role in the pathogenesis of ccRCC that is increased in the presence of a specific RNASET2-SV and associated with changes in the cellular localization of the protein.
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Carcinoma de Células Renales , Neoplasias Renales , Ribonucleasas , Femenino , Humanos , Masculino , Persona de Mediana Edad , Carcinoma de Células Renales/genética , Carcinoma de Células Renales/metabolismo , Carcinoma de Células Renales/patología , Línea Celular Tumoral , Regulación Neoplásica de la Expresión Génica , Neoplasias Renales/genética , Neoplasias Renales/metabolismo , Neoplasias Renales/patología , Ribonucleasas/genética , Ribonucleasas/metabolismo , Microambiente Tumoral , Proteínas Supresoras de Tumor/genética , Proteínas Supresoras de Tumor/metabolismoRESUMEN
BACKGROUND: Over two-thirds of people present to their primary care physician (or general practitioner; GP) as a first point of contact for mental health concerns. However, eating disorders (EDs) are often not identified in a primary care setting. A significant barrier to early detection and intervention is lack of primary care physician training in EDs; compounded by the significant time commitments required for training by already time-poor general practitioners. The aim of the current study was to pilot and evaluate a microlearning programme that can be delivered to general practitioners with high workloads to help support patients with, or at risk of, developing an ED. METHODS: Fifty-one Australian general practitioners aged between 25-to-60 years old were recruited. Participants completed a baseline questionnaire to ascertain their experience working in general practice and with EDs. Participants then completed an online programme consisting of a series of 10 case studies (vignettes) delivered over a 6-10 week period related to various facets of ED care. Following conclusion of the programme, participants were asked to complete an evaluative questionnaire related to the content of the programme; perceived knowledge, confidence, willingness-to-treat, skill change; and their overall experience of microlearning. RESULTS: All 51 GPs completed the programme and reached completion criteria for all vignettes, 40 of whom completed the programme evaluation. Participants indicated improved skill, confidence, willingness-to-treat, and knowledge following the completion of the pilot programme. Almost all (97.5%; n = 39) found microlearning to be an effective method to learn about EDs; with 87.5% (n = 35) of participants reporting they felt able to apply what was learnt in practice. Qualitative feedback highlighted the benefit of microlearning's flexibility to train general practitioners to work with complex health presentations, specifically EDs. CONCLUSIONS: Findings from the current study lend support to the use of microlearning in medical health professional training; notably around complex mental health concerns. Microlearning appears to be an acceptable and effective training method for GPs to learn about EDs. Given the significant time demands on GPs and the resulting challenges in designing appropriate training for this part of the workforce, this training method has promise. The pre-existing interest in EDs in the current study sample was high; future studies should sample more broadly to ensure that microlearning can be applied at scale.
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Trastornos de Alimentación y de la Ingestión de Alimentos , Humanos , Proyectos Piloto , Adulto , Persona de Mediana Edad , Femenino , Masculino , Encuestas y Cuestionarios , Médicos de Atención Primaria/educación , Australia , Educación Médica Continua/métodos , Competencia Clínica , Atención Primaria de SaludRESUMEN
The pandemic necessitated the rapid design, development and implementation of technologies to allow remote monitoring of COVID-19 patients at home. This study aimed to explore the environmental barriers and facilitators to the successful development and implementation of virtual care technologies in this fast-paced context. We interviewed eight staff at a virtual hospital in Australia. We found key facilitators to be a learning organizational culture and strong leadership support. Barriers included interoperability issues, legislative constraints and unrealistic clinician expectations. Also, we found that a combination of hot-desking and the lack of single sign on in the virtual care environment, was reported to create additional work for staff. Overall, despite this unique context, our findings are consistent with prior work examining design and implementation of healthcare technologies. The fast pace and high-pressure environment appeared to magnify previously reported barriers, but also cultivate and foster a learning culture.
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COVID-19 , Humanos , Australia , Instituciones de Salud , Hospitales , LiderazgoRESUMEN
Artificial Intelligence (AI) has great potential to improve healthcare, but implementation into routine practice remains a challenge. This study scoped the extent to which AI and Natural Language Processing (NLP) is being implemented into routine practice in Australian healthcare organisations. An environmental scan of publicly available data was undertaken to identify AI applications. Publicly available data consisted of news posts from Australian public healthcare organisations and conference proceedings from key research organisations. Two researchers reviewed and analysed posts related to AI applications to create a list of potential implementation case studies. The final list of AI applications was reviewed by a governance committee in order to identify any missing applications. One application was identified by the governance committee and subsequently added. The environmental scan identified eighteen AI applications, of which eleven met all eligibility criteria. Only one application included NLP. Twelve applications were included when the application identified by the governance committee was added to the list. Implementation of AI applications is spread across four broad categories of use: 1) Decision Support, 2) Monitoring Treatment Effectiveness, 3) Personalised Care and 4) Risk Prediction.
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Inteligencia Artificial , Procesamiento de Lenguaje Natural , Australia , Determinación de la Elegibilidad , Instituciones de SaludRESUMEN
AIM: To develop a priority set of quality indicators (QIs) for use by colorectal cancer (CRC) multidisciplinary teams (MDTs). METHODS: The review search strategy was executed in four databases from 2009-August 2019. Two reviewers screened abstracts/manuscripts. Candidate QIs and characteristics were extracted using a tailored abstraction tool and assessed for scientific soundness. To prioritize candidate indicators, a modified Delphi consensus process was conducted. Consensus was sought over two rounds; (1) multidisciplinary expert workshops to identify relevance to Australian CRC MDTs, and (2) an online survey to prioritize QIs by clinical importance. RESULTS: A total of 93 unique QIs were extracted from 118 studies and categorized into domains of care within the CRC patient pathway. Approximately half the QIs involved more than one discipline (52.7%). One-third of QIs related to surgery of primary CRC (31.2%). QIs on supportive care (6%) and neoadjuvant therapy (6%) were limited. In the Delphi Round 1, workshop participants (n = 12) assessed 93 QIs and produced consensus on retaining 49 QIs including six new QIs. In Round 2, survey participants (n = 44) rated QIs and prioritized a final 26 QIs across all domains of care and disciplines with a concordance level > 80%. Participants represented all MDT disciplines, predominantly surgical (32%), radiation (23%) and medical (20%) oncology, and nursing (18%), across six Australian states, with an even spread of experience level. CONCLUSION: This study identified a large number of existing CRC QIs and prioritized the most clinically relevant QIs for use by Australian MDTs to measure and monitor their performance.
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Neoplasias Colorrectales , Indicadores de Calidad de la Atención de Salud , Humanos , Australia/epidemiología , Consenso , Neoplasias Colorrectales/terapia , Técnica DelphiRESUMEN
INTRODUCTION: eHealth data analytics is widely used in health care research. However, there is limited knowledge on the role of eHealth data analysis to inform continuing professional development (CPD). The aim of this study was to collate available research evidence on the use of eHealth data for the development of CPD programs and plans for medical practitioners. METHODS: A scoping review was conducted using the six-stage Arksey and O'Malley Framework. A consultation exercise (stage 6) was performed with 15 international experts in the fields of learning and practice analytics to deepen the insights. RESULTS: Scoping review. The literature searches identified 9876 articles published from January 2010 to May 2022. After screening and full-text review, a total of nine articles were deemed relevant for inclusion. The results provide varied-and at times partial or diverging-answers to the scoping review research questions. Consultation exercise. Research rigor, field of investigation, and developing the field were the three themes emerged from analysis. Participants validated the scoping review methodology and confirmed its results. Moreover, they provided a meta-analysis of the literature, a description of the current CPD ecosystem, and clear indications of what is and should be next for the field. DISCUSSION: This study shows that there is no formal or well-established correlation between eHealth data and CPD planning and programming. Overall findings fill a gap in the literature and provide a basis for further investigation. More foundational work, multidisciplinary collaborations, and stakeholders' engagement are necessary to advance the use of eHealth data analysis for CPD purposes.
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Telemedicina , Humanos , Personal de Salud , Conocimiento , AprendizajeRESUMEN
OBJECTIVES: Digital health is now routinely being applied in clinical care, and with a variety of clinician-facing systems available, healthcare organisations are increasingly required to make decisions about technology implementation and evaluation. However, few studies have examined how digital health research is prioritised, particularly research focused on clinician-facing decision support systems. This study aimed to identify criteria for prioritising digital health research, examine how these differ from criteria for prioritising traditional health research and determine priority decision support use cases for a collaborative implementation research programme. METHODS: Drawing on an interpretive listening model for priority setting and a stakeholder-driven approach, our prioritisation process involved stakeholder identification, eliciting decision support use case priorities from stakeholders, generating initial use case priorities and finalising preferred use cases based on consultations. In this qualitative study, online focus group session(s) were held with stakeholders, audiorecorded, transcribed and analysed thematically. RESULTS: Fifteen participants attended the online priority setting sessions. Criteria for prioritising digital health research fell into three themes, namely: public health benefit, health system-level factors and research process and feasibility. We identified criteria unique to digital health research as the availability of suitable governance frameworks, candidate technology's alignment with other technologies in use,and the possibility of data-driven insights from health technology data. The final selected use cases were remote monitoring of patients with pulmonary conditions, sepsis detection and automated breast screening. CONCLUSION: The criteria for determining digital health research priority areas are more nuanced than that of traditional health condition focused research and can neither be viewed solely through a clinical lens nor technological lens. As digital health research relies heavily on health technology implementation, digital health prioritisation criteria comprised enablers of successful technology implementation. Our prioritisation process could be applied to other settings and collaborative projects where research institutions partner with healthcare delivery organisations.
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Investigación Biomédica Traslacional , Humanos , Investigación Cualitativa , Grupos FocalesRESUMEN
Background: Lymphoedema is a condition of localised swelling caused by a compromised lymphatic system. The protein-rich fluid accumulating in the interstitial tissue can create inflammation and irreversible changes to the skin and underlying tissue. An array of methods has been used to assess and report these changes. Heterogeneity is evident in the clinic and in the literature for the domains assessed, outcomes and outcome measures selected, measurement protocols followed, methods of analysis, and descriptors used to report change. Objective: This study seeks consensus on the required items for inclusion in a core data set for upper limb lymphoedema to digitise the monitoring and reporting of upper limb lymphoedema. Methods: The breadth of outcomes and descriptors in common use were captured in prior studies by this research group. This list was refined by frequency and proposed to experts in the field (n = 70) through a two-round online modified Delphi study. These participants rated the importance of each item for inclusion in the dataset and identified outcomes or descriptors they felt were missing in Round 1. In Round 2, participants rated any new outcomes or descriptors proposed and preference for how numeric data is displayed. Results: The core dataset was confirmed on completion of Round 2. Interlimb difference as a percentage, and limb volume were preferred for graphed display over time; and descriptors for observed and palpated change narrowed from 42 to 20. Conclusion: This dataset provides the foundation to create a clinical support system for upper limb lymphoedema.
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BACKGROUND: The COVID-19 pandemic triggered a rapid scale-up of telehealth services in Australia as a means to provide continued care through periods of physical restrictions. The factors that influence engagement in telehealth remain unclear. OBJECTIVE: The purpose of this study is to understand the experience of Australian people who engaged in a telehealth consultation during the pandemic period (2020-2021) and the demographic factors that influence engagement. METHODS: A web-based survey was distributed to Australians aged over 18 years that included 4 questions on frequency and type of clinical consultation, including with a general practitioner (GP), specialist, allied health, or nurse; 1 question on the experience of telehealth; and 2 questions on the quality of and satisfaction with telehealth. Statistical analysis included proportion of responses (of positive responses where a Likert scale was used) and regression analyses to determine the effect of demographic variables. RESULTS: Of the 1820 participants who completed the survey, 88.3% (1607/1820) had engaged in a health care consultation of some type in the previous 12 months, and 69.3% (1114/1607) of those had used telehealth. The most common type of consultation was with a GP (959/1114, 86.1%). Older people were more likely to have had a health care consultation but less likely to have had a telehealth consultation. There was no difference in use of telehealth between metropolitan and nonmetropolitan regions; however, people with a bachelor's degree or above were more likely to have used telehealth and to report a positive experience. A total of 87% (977/1114) of participants agreed or strongly agreed that they had received the information they required from their consultation, 71% (797/1114) agreed or strongly agreed that the outcome of their consultation was the same as it would have been face-to-face, 84% (931/1114) agreed or strongly agreed that the doctor or health care provider made them feel comfortable, 83% (924/1114) agreed or strongly agreed that the doctor or health care provider was equally as knowledgeable as providers they have seen in person; 57% (629/1114) of respondents reported that they would not have been able to access their health consultation if it were not for telehealth; 69% (765/1114) of respondents reported that they were satisfied with their telehealth consultation, and 60% (671/1114) reported that they would choose to continue to use telehealth in the future. CONCLUSIONS: There was a relatively high level of engagement with telehealth over the 12 months leading up to the study period, and the majority of participants reported a positive experience and satisfaction with their telehealth consultation. While there was no indication that remoteness influenced telehealth usage, there remains work to be done to improve access to older people and those with less than a bachelor's degree.
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COVID-19 , Médicos Generales , Telemedicina , Humanos , Adulto , Persona de Mediana Edad , Anciano , Satisfacción del Paciente , Pandemias , Australia , COVID-19/epidemiología , Satisfacción Personal , InternetRESUMEN
OBJECTIVE: This study explored factors that may influence blood pressure (BP) control in patients with atrial fibrillation (AF) with hypertension. METHODS: Cross-sectional retrospective analysis of the MedicineInsight database which includes de-identified electronic health records from general practices (GPs) across Australia. BP control was assessed in patients with diagnosed AF and hypertension (controlled BP defined as <140/90 mm Hg). We explored BP control, factors influencing BP control and likelihood of receiving guideline-recommended treatment. RESULTS: 34 815 patients with AF and hypertension were included; mean age was 76.9 (10.2 SD) years and 46.2% were female. 38.0% had uncontrolled BP. Women (OR 0.72; 95% CI 0.68, 0.76; p<0.001) and adults ≥75 years (OR 0.78; 95% CI 0.70, 0.86; p<0.001) were less likely to have controlled BP. Greater continuity of care (CoC; that is, visits with the same clinician) and having frequent GP visits were associated with higher odds of controlled BP (model 1: CoC, OR 1.29; 95% CI 1.20, 1.40, p<0.001; GP visits, OR 1.71; 95% CI 1.58, 1.85, p<0.001) and a greater likelihood of being prescribed ≥2 types of BP-lowering medicines (model 2: CoC, OR 1.12; 95% CI 1.03, 1.23; p=0.011; GP visits, OR 1.80; 95% CI 1.63, 1.98; p<0.001). CONCLUSIONS: Uncontrolled BP was more likely in women and adults ≥75 years. Patients who had frequent GP visits with the same clinician were more likely to have BP controlled and receive guideline-recommended antihypertensive treatment. This suggests that targeting these primary care factors could potentially improve BP control and subsequently reduce stroke risk in patients with AF.
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Fibrilación Atrial , Hipertensión , Adulto , Humanos , Femenino , Anciano , Masculino , Presión Sanguínea/fisiología , Fibrilación Atrial/diagnóstico , Fibrilación Atrial/tratamiento farmacológico , Fibrilación Atrial/epidemiología , Estudios Transversales , Estudios Retrospectivos , Australia/epidemiología , Hipertensión/tratamiento farmacológico , Hipertensión/epidemiología , Hipertensión/complicaciones , Antihipertensivos/uso terapéutico , Antihipertensivos/farmacología , Factores de Riesgo , Atención Primaria de SaludRESUMEN
Lung cancer patients have a high symptom burden that negatively affects their quality of life. Increasing patient self-efficacy to deal with treatment side effects can ameliorate their symptom burden. Education programs can help enhance patient self-efficacy by giving patients more control over their condition through increased disease literacy. This study aimed to evaluate the feasibility of microlearning for delivering lung cancer patients' information on side effects of chemotherapy. Secondary objectives of the program are to understand the acceptability of microlearning for delivery this type of education to lung cancer patients and the potential impact of microlearning on patient self-efficacy, knowledge and confidence managing side effects of chemotherapy. A mixed-methods prepost test (or quasi-experimental) study design was used to better enable patients to identify and manage the side effects of their condition and chemotherapy. Participants were patients diagnosed with stage II to stage IV lung cancer, who had a life expectancy of greater than 3 months and were aged 18 years or older. Multiple validated scales were used to assess patient self-efficacy pre- and post-intervention. The online program was evaluated using quantitative data of completion rates extracted from the online platform. Semi-structured interviews were used to explore the impact of the online program on perceived self-efficacy and quality of life. Twenty-three participants agreed to participate in the study and five agreed to complete a semi-structured interview. Participants found the content comprehensive, relevant and engaging. The program improved perceived disease literacy and helped participants develop coping strategies to manage side effects. Participants also found the platform easy to use and navigate. Additional courses and features were requested. Patients with a diagnosis of cancer receive a large amount of information about the side effects of chemotherapy and how to manage them. This information is often provided soon after diagnosis or upon commencement of therapy, which can be overwhelming for some patients. Microlearning, a method of online learning that spaces distributing of content over several weeks, may be a useful tool for supporting delivering of health information to this group of patients.
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Neoplasias Pulmonares , Autoeficacia , Humanos , Calidad de Vida , Estudios de Factibilidad , Adaptación Psicológica , Neoplasias Pulmonares/tratamiento farmacológicoRESUMEN
As health care continues to change and evolve in a digital society, there is an escalating need for physicians who are skilled and enabled to deliver care using digital health technologies, while remaining able to successfully broker the triadic relationship among patients, computers and themselves. The focus needs to remain firmly on how technology can be leveraged and used to support good medical practice and quality health care, particularly around resolution of longstanding challenges in health care delivery, including equitable access in rural and remote areas, closing the gap on health outcomes and experiences for First Nations peoples and better support in aged care and those living with chronic disease and disability. We propose a set of requisite digital health competencies and recommend that the acquisition and evaluation of these competencies become embedded in physician training curricula and continuing professional development programmes.
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Médicos , Humanos , Anciano , Atención a la Salud , CurriculumRESUMEN
OBJECTIVES: The aim of this study is to explore the current and future state of quality measurement and feedback and identify factors influencing measurement feedback systems, including the barriers and enablers to their effective design, implementation, use and translation into quality improvement. DESIGN: This qualitative study used semistructured interviews with key informants. A deductive framework analysis was conducted to code transcripts to the Theoretical Domains Framework (TDF). An inductive analysis was used to produce subthemes and belief statements within each TDF domain. SETTING: All interviews were conducted by videoconference and audio-recorded. PARTICIPANTS: Key informants were purposively sampled experts in quality measurement and feedback, including clinical (n=5), government (n=5), research (n=4) and health service leaders (n=3) from Australia (n=7), the USA (n=4), the UK (n=2), Canada (n=2) and Sweden (n=2). RESULTS: A total of 17 key informants participated in the study. The interview length ranged from 48 to 66 min. 12 theoretical domains populated by 38 subthemes were identified as relevant to measurement feedback systems. The most populous domains included environmental context and resources, memory, attention and decision-making, and social influences. The most populous subthemes included 'quality improvement culture', 'financial and human resource support' and 'patient-centred measurement'. There were minimal conflicting beliefs outside of 'data quality and completeness'. Conflicting beliefs in these subthemes were predominantly between government and clinical leaders. CONCLUSIONS: Multiple factors were found to influence measurement feedback systems and future considerations are presented within this manuscript. The barriers and enablers that impact these systems are complex. While there are some clear modifiable factors in the design of measurement and feedback processes, influential factors described by key informants were largely socioenvironmental. Evidence-based design and implementation, coupled with a deeper understanding of the implementation context, may lead to enhanced quality measurement feedback systems and ultimately improved care delivery and patient outcomes.
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Atención a la Salud , Calidad de la Atención de Salud , Humanos , Retroalimentación , Investigación Cualitativa , CanadáRESUMEN
BACKGROUND: Despite the high incidence of chronic obstructive pulmonary disease (COPD) in Aboriginal communities in Australia, Aboriginal Health Workers (AHWs) have limited knowledge about effective management. AIM: To evaluate an online education program, co-designed with AHWs and exercise physiologists (EPs) or physiotherapists (PTs), to increase knowledge about COPD and its management. METHODS: AHWs and EPs from four Aboriginal Community Controlled Health Services (ACCHS) were recruited. An Aboriginal researcher and a physiotherapist experienced in COPD management and pulmonary rehabilitation (PR) delivered seven online education sessions. These sessions used co-design principles and an Aboriginal pedagogy framework '8 Ways of learning', which incorporates Aboriginal protocols and perspectives to realign teaching techniques and strengthen learning outcomes. Topics covered were: How the lungs work; What is COPD; Medications and how to use inhalers and COPD Action Plans; Why exercise is important; Managing breathlessness; Healthy eating; Managing anxiety and depression. After each session, AHWs with support from EPs, co-designed education 'yarning' resources using Aboriginal ways of learning to ensure topics were culturally safe for the local Aboriginal community and practiced delivering this at the following session. At the end of the program participants completed an anonymous online survey (5-point Likert scale) to assess satisfaction, and a semi-structured interview about their experience of the online education. RESULTS: Of the 12 participants, 11 completed the survey (7 AHWs, 4 EPs). Most (90%) participants strongly agreed or agreed that the online sessions increased knowledge and skills they needed to support Aboriginal patients with COPD. All (100%) participants felt: their cultural perspectives and opinions were valued and that they were encouraged to include cultural knowledge. Most (91%) reported that delivering their own co-designed yarning scripts during the online sessions improved their understanding of the topics. Eleven participants completed semi-structured interviews about participating in online education to co-design Aboriginal 'yarning' resources. Themes identified were: revealing the Aboriginal lung health landscape; participating in online learning; structuring the online education sessions; co-designing with the facilitators. CONCLUSIONS: Online education using co-design and 8 Ways of learning was rated highly by AHWs and EPs for improving COPD knowledge and valuing cultural perspectives. The use of co-design principles supported the cultural adaptation of COPD resources for Aboriginal people with COPD. TRIAL REGISTRATION: PROSPERO (registration number: CRD42019111405).
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Servicios de Salud del Indígena , Enfermedades Pulmonares , Enfermedad Pulmonar Obstructiva Crónica , Humanos , Aborigenas Australianos e Isleños del Estrecho de Torres , Enfermedades Pulmonares/terapia , Enfermedad Pulmonar Obstructiva Crónica/terapia , Educación del Paciente como AsuntoRESUMEN
BACKGROUND: About 70% of patients with advanced cancer experience pain. Few studies have investigated the use of healthcare in this population and the relationship between pain intensity and costs. METHODS: Adults with advanced cancer and scored worst pain ≥ 2/10 on a numeric rating scale (NRS) were recruited from 6 Australian oncology/palliative care outpatient services to the Stop Cancer PAIN trial (08/15-06/19). Out-of-hospital, publicly funded services, prescriptions and costs were estimated for the three months before pain screening. Descriptive statistics summarize the clinico-demographic variables, health services and costs, treatments and pain scores. Relationships with costs were explored using Spearman correlations, Mann-Whitney U and Kruskal-Wallis tests, and a gamma log-link generalized linear model. RESULTS: Overall, 212 participants had median worst pain scores of five (inter-quartile range 4). The most frequently prescribed medications were opioids (60.1%) and peptic ulcer/gastro-oesophageal reflux disease (GORD) drugs (51.6%). The total average healthcare cost in the three months before the census date was A$6,742 (95% CI $5,637, $7,847), approximately $27,000 annually. Men had higher mean healthcare costs than women, adjusting for age, cancer type and pain levels (men $7,872, women $4,493, p<0.01) and higher expenditure on prescriptions (men $5,559, women $2,034, p<0.01). CONCLUSIONS: In this population with pain and cancer, there was no clear relationship between healthcare costs and pain severity. These treatment patterns requiring further exploration including the prevalence of peptic ulcer/GORD drugs, and lipid lowering agents and the higher healthcare costs for men. TRIAL REGISTRATION: ACTRN12615000064505. World Health Organisation unique trial number U1111-1164-4649. Registered 23 January 2015.
Asunto(s)
Dolor en Cáncer , Reflujo Gastroesofágico , Neoplasias , Adulto , Femenino , Humanos , Masculino , Australia/epidemiología , Dolor en Cáncer/terapia , Hospitales , Neoplasias/complicaciones , Neoplasias/terapia , Pacientes Ambulatorios , Dolor , Aceptación de la Atención de SaludRESUMEN
NUP98 fusions comprise a family of rare recurrent alterations in AML, associated with adverse outcomes. In order to define the underlying biology and clinical implications of this family of fusions, we performed comprehensive transcriptome, epigenome, and immunophenotypic profiling of 2,235 children and young adults with AML and identified 160 NUP98 rearrangements (7.2%), including 108 NUP98-NSD1 (4.8%), 32 NUP98-KDM5A (1.4%) and 20 NUP98-X cases (0.9%) with 13 different fusion partners. Fusion partners defined disease characteristics and biology; patients with NUP98-NSD1 or NUP98-KDM5A had distinct immunophenotypic, transcriptomic, and epigenomic profiles. Unlike the two most prevalent NUP98 fusions, NUP98-X variants are typically not cryptic. Furthermore, NUP98-X cases are associated with WT1 mutations, and have epigenomic profiles that resemble either NUP98-NSD1 or NUP98-KDM5A. Cooperating FLT3-ITD and WT1 mutations define NUP98-NSD1, and chromosome 13 aberrations are highly enriched in NUP98-KDM5A. Importantly, we demonstrate that NUP98 fusions portend dismal overall survival, with the noteworthy exception of patients bearing abnormal chromosome 13 (clinicaltrials gov. Identifiers: NCT00002798, NCT00070174, NCT00372593, NCT01371981).