RESUMO
BACKGROUND: Liver diseases are important contributors to the mortality gap between Indigenous and non-Indigenous Australians. AIMS: This cohort study examined factors associated with hospital admissions and healthcare outcomes among Indigenous Australians with cirrhosis. METHODS: Patient-reported outcomes were obtained by face-to-face interview (Chronic Liver Disease Questionnaire and Short Form 36 (SF-36)). Clinical data were extracted from medical records and through data linkage for 534 patients (25 indigenous). Cumulative overall survival (Kaplan-Meier), rates of hospital admissions and emergency presentations, and costs were assessed by indigenous status. Incidence rate ratios (IRR; Poisson regression) were reported. RESULTS: Indigenous Australians admitted to hospital with cirrhosis had lower educational status compared with non-indigenous patients (79.2% vs 43.4%; P < 0.001). The two groups had, in general, similar clinical characteristics including disease severity (P = 0.78), presence of cirrhosis complications (P = 0.67), comorbidities (P = 0.62), rates of cirrhosis-related admissions (P = 0.86) and 5-year survival (P = 0.30). However, indigenous patients had a lower score in the SF-36 domain related to bodily pain (P = 0.037), more cirrhosis admissions via the emergency department (IRR = 1.42, 95% confidence interval (CI) 1.10-1.83) and fewer planned cirrhosis admissions (IRR = 0.32, 95% CI 0.14-0.72). The total cost for cirrhosis-related hospital admissions for 534 patients over 6 years (July 2012 to June 2018) was A$13.7 million. The cost of cirrhosis-related hospital admissions was double for indigenous patients (cost ratio = 2.04, 95% CI 2.04-2.05). CONCLUSIONS: Our data highlight the disparities in health service use and patient-reported outcomes, despite having similar clinical profiles. Integration between primary care, Aboriginal Community Controlled Health Organisations and liver specialists is critical for appropriate health service delivery and effective use of resources. Chronic liver disease costs the community dearly.
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Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Hospitalização , Cirrose Hepática , Humanos , Austrália/epidemiologia , Estudos de Coortes , Hospitalização/economia , Hospitalização/estatística & dados numéricos , Hospitais , Cirrose Hepática/economia , Cirrose Hepática/epidemiologia , Cirrose Hepática/etnologia , Cirrose Hepática/terapia , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres/estatística & dados numéricosRESUMO
AIM: To explore the care experiences of Aboriginal and Torres Strait Islander Australians diagnosed with cirrhosis with a focus on support needed. BACKGROUND: Cirrhosis disproportionately affects Indigenous Australians, and liver diseases contribute to the mortality gap between Indigenous and other Australian adults. DESIGN: A qualitative study. METHODS: Using yarning methods, Indigenous patients (n = 13) and support persons (n = 3) were interviewed by an Aboriginal researcher during April-July, 2020. Thematic analysis was used to identify common themes using an inductive approach. RESULTS: Six themes emerged. (1) Experience of diagnosis. This theme included stories of delays in the system, self-awareness of signs and symptoms and relief of being diagnosed. (2) 'Shame, shame, shame'. Experiences of prejudices and discrimination from health professionals, the lack of understanding of cirrhosis among health professionals, and stories about alcohol cessation and counselling around alcohol cessation. (3) Health literacy. Participants' understanding of cirrhosis was variable. While the importance of knowledge was recognised, 'what works for someone might not work for others'. Several patients partnered with their support persons and clinicians to bridge the health literacy gap. (4) Sources of support included family and friends, transport facilities, health professionals and peers. (5) Positive and negative aspects of communication and patient consultation were discussed. (6) Psychosocial counselling to 'look after the caring side'. The need for more mental health care services was raised. CONCLUSION: Barriers related to poor health literacy, stigma and lack of practical and emotional support, and issues with communication and patient consultation, may lead to inequitable access to cirrhosis care and treatment for Indigenous Australians. RELEVANCE TO CLINICAL PRACTICE: Gaining knowledge of the experiences of Indigenous Australians with cirrhosis is important for providing patient-centred and culturally appropriate care. Liver specialist nurses have an important role in bridging the health literacy gap and in supporting Indigenous patients and families.
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Atenção à Saúde , Instalações de Saúde , Adulto , Humanos , Austrália , Pesquisa QualitativaRESUMO
BACKGROUND: Optimal management of cirrhosis is complex, and patients often lack knowledge and skills, which can affect self-management. We assessed patient knowledge about cirrhosis and examined whether knowledge was associated with clinical outcomes, healthcare service use, and healthcare costs. A cross-sectional 'knowledge survey' was conducted during 2018-2020. We assessed patient knowledge about cirrhosis and explore whether knowledge was associated with clinical outcomes, healthcare service use, and costs. METHODS: Patients with cirrhosis (n = 123) completed a 'knowledge survey'. We calculated the proportion of correct answers to eight questions deemed to be "key knowledge" about cirrhosis by an expert panel, and dichotomized patients as 'good knowledge'/'poor knowledge'. Clinical data, healthcare costs, and health-related quality of life (SF-36) were available. RESULTS: 58.5% of patients had 'good knowledge' about cirrhosis. Higher education level was associated with higher odds of having 'good knowledge' about cirrhosis (adjusted-OR = 5.55, 95%CI 2.40-12.84). Compared to patients with 'poor knowledge', those with 'good knowledge' had a higher health status in the SF-36 physical functioning domain (p = 0.011), fewer cirrhosis-related admissions (adjusted incidence rate ratio [IRR] = 0.59, 95%CI 0.35-0.99) and emergency presentations (adj-IRR = 0.34, 95%CI 0.16-0.72), and more planned 1-day cirrhosis admissions (adj-IRR = 3.96, 95%CI 1.46-10.74). The total cost of cirrhosis admissions was lower for patients with 'good knowledge' (adj-IRR = 0.30, 95%CI 0.29-0.30). CONCLUSION: Poor disease knowledge is associated with increased use and total cost of healthcare services. Targeted educational interventions to improve patient knowledge may be an effective strategy to promote a more cost-effective use of healthcare services.
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Serviços de Saúde , Qualidade de Vida , Estudos Transversais , Custos de Cuidados de Saúde , Humanos , Cirrose Hepática/terapiaRESUMO
BACKGROUND: Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs. PURPOSE: To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life. METHOD: Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted. RESULTS: In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%). CONCLUSIONS: Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.
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Serviços de Saúde do Indígena/normas , Neoplasias/terapia , Cuidados Paliativos/métodos , Assistência Terminal/psicologia , Idoso , Austrália/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Havaiano Nativo ou Outro Ilhéu do Pacífico , Neoplasias/psicologiaRESUMO
BACKGROUND: Indigenous Australians experience greater health disadvantage and have a higher prevalence of many chronic health conditions. Liver diseases leading to cirrhosis are among the most common contributor to the mortality gap between Indigenous and other Australian adults. However, no comparative data exist assessing differences in presentation and patient outcomes between Indigenous and non-Indigenous Australians hospitalised with cirrhosis. METHODS: Using data from the Hospital Admitted Patient Data Collection and the Death Registry, this retrospective, population-based, cohort study including all people hospitalised for cirrhosis in the state of Queensland during 2008-2017 examined rate of readmission (Poisson regression), cumulative survival (Kaplan-Meier), and assessed the differences in survival (Multivariable Cox regression) by Indigenous status. Predictor variables included demographic, health service characteristics and clinical data. RESULTS: We studied 779 Indigenous and 10,642 non-Indigenous patients with cirrhosis. A higher proportion of Indigenous patients were younger than 50 years (346 [44%] vs. 2063 [19%] non-Indigenous patients), lived in most disadvantaged areas (395 [51%) vs. 2728 [26%]), had alcohol-related cirrhosis (547 [70%] vs. 5041 [47%]), had ascites (314 [40%] vs. 3555 [33%), and presented to hospital via the Emergency Department (510 [68%] vs. 4790 [47%]). Indigenous patients had 3.04 times the rate of non-cirrhosis readmissions (95%CI 2.98-3.10), 1.35 times the rate of cirrhosis-related readmissions (95%CI 1.29-1.41), and lower overall survival (17% vs. 27%; unadjusted hazard ratio (HR) = 1.16 95%CI 1.06-1.27), compared to non-Indigenous patients. Most of the survival deficit was explained by Emergency Department presentation (adj-HR = 1.03 95%CI 0.93-1.13), and alcohol-related aetiology (adj-HR = 1.08 95%CI 0.99-1.19). The remaining survival deficit was influenced by the other clinico-demographic and health service factors (final adj-HR = 1.08 95%CI 0.96-1.20). CONCLUSIONS: There was evidence of differential presentation, higher rates of readmissions, and poorer survival for Indigenous Australians with cirrhosis, compared to other Australians. The increased prevalence of Emergency Department presentation among Indigenous patients suggests missed opportunities for early intervention to prevent progressive cirrhosis complications and hospital readmissions.
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Disparidades nos Níveis de Saúde , Hospitalização , Cirrose Hepática , Havaiano Nativo ou Outro Ilhéu do Pacífico , Adulto , Idoso , Idoso de 80 Anos ou mais , Consumo de Bebidas Alcoólicas , Austrália/epidemiologia , Doença Crônica , Estudos de Coortes , Serviço Hospitalar de Emergência , Feminino , Humanos , Cirrose Hepática/etiologia , Cirrose Hepática/mortalidade , Cirrose Hepática/terapia , Masculino , Pessoa de Meia-Idade , Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , Readmissão do Paciente , Modelos de Riscos Proporcionais , Queensland/epidemiologia , Sistema de Registros , Estudos Retrospectivos , Fatores de Risco , Adulto JovemRESUMO
PURPOSE: The role of general practitioners in cancer care has expanded in recent years. However, little is known about utilization of primary health care (PHC) services by patients with cancer, particularly among socio-economically disadvantaged groups. We describe utilization of PHC services by patients with cancer, and the nature of the care provided. The study focuses on a disadvantaged group in Australia, namely Indigenous Australians. METHODS: A retrospective audit of clinical records in ten PHC services in Queensland, Australia. Demographic and clinical data of Indigenous Australians diagnosed with cancer during 2010-2016 were abstracted from patient's medical records at the PHC services. The rates of cancer-related visits were calculated using person years at risk as a denominator. RESULTS: A total of 138 patients' records were audited. During 12 months following the cancer diagnosis, patients visited the PHC service on average 5.95 times per year. Frequency of visits were relatively high in remote areas and among socioeconomic disadvantaged patients (IRR = 1.87, 95%CI 1.61-2.17; IRR = 1.79, 95%CI 1.45-2.21, respectively). Over 80% of visits were for seeking attention for symptoms, wound care, and emotional or social support. Patients who did not undergo surgery, had greater comorbidity, received chemotherapy and/or radiotherapy, and male gender had significantly greater rate of visits than their counterparts. CONCLUSION: The frequency of utilization of PHC services, especially by patients with comorbidities, and the range of reasons for attendance highlights the important role of PHC services in providing cancer care. The reliance on PHC services, particularly by patients in remote and disadvantaged communities, has important implications for appropriate resourcing and support for services in these locations.
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Serviços de Saúde do Indígena/estatística & dados numéricos , Havaiano Nativo ou Outro Ilhéu do Pacífico , Neoplasias/terapia , Médicos de Atenção Primária/estatística & dados numéricos , Padrões de Prática Médica/estatística & dados numéricos , Atenção Primária à Saúde/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Austrália/epidemiologia , Auditoria Clínica , Feminino , Clínicos Gerais/normas , Clínicos Gerais/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/normas , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Serviços de Saúde do Indígena/normas , Humanos , Povos Indígenas/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , Neoplasias/etnologia , Padrões de Prática Médica/normas , Atenção Primária à Saúde/normas , Queensland/epidemiologia , Encaminhamento e Consulta/normas , Encaminhamento e Consulta/estatística & dados numéricos , Estudos Retrospectivos , Adulto JovemRESUMO
BACKGROUND: Cancer care involves many different healthcare providers. Delayed or inaccurate communication between specialists and general practitioners (GP) may negatively affect care. AIM: To describe the pattern and variation of communication between primary healthcare (PHC) services and hospitals and specialists in relation to the patient's cancer care. METHODS: A retrospective audit of clinical records of Indigenous Australians diagnosed with cancer during 2010-2016 identified through 10 PHC services in Queensland is described. Poisson regression was used to model the dichotomous outcome availability of hospital discharge summary versus not. RESULTS: A total of 138 patient records was audited; 115 of those patients visited the PHC service for cancer-related care after cancer diagnosis; 40.0% visited the service before a discharge summary was available, and 36.5% of the patients had no discharge summary in their medical notes. While most discharge summaries noted important information about the patient's cancer, 42.4% lacked details regarding the discharge medications regimen. CONCLUSIONS: Deficits in communication and information transfer between specialists and GP may adversely affect patient care. Indigenous Australians are a relatively disadvantaged group that experience poor health outcomes and relatively poor access to care. The low proportion of discharge summaries noting discharge medication regimen is of concern among Indigenous Australians with cancer who have high comorbidity burden and low health literacy. Our findings provide an insight into some of the factors associated with quality of cancer care, and may provide guidance for focus areas for further research and improvement efforts.
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Serviços de Saúde do Indígena/estatística & dados numéricos , Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , Neoplasias/terapia , Médicos de Atenção Primária/estatística & dados numéricos , Atenção Primária à Saúde/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Clínicos Gerais/normas , Clínicos Gerais/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/normas , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Serviços de Saúde do Indígena/normas , Humanos , Masculino , Auditoria Médica , Pessoa de Meia-Idade , Neoplasias/etnologia , Padrões de Prática Médica/normas , Padrões de Prática Médica/estatística & dados numéricos , Atenção Primária à Saúde/normas , Queensland/epidemiologia , Encaminhamento e Consulta/normas , Análise de Regressão , Estudos Retrospectivos , Adulto JovemRESUMO
OBJECTIVES: This study describes and compares the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer. METHODS: Data from two cross-sectional supportive care needs studies were matched in a 1:1 ratio for Indigenous (n = 125) and Non-Indigenous (n = 125) Australian adults diagnosed with cancer. Descriptive statistics were used to compare type and prevalence of 24 need items measured by the SCNS-SF34 and SCNAT-IP. RESULTS: A higher proportion of Non-Indigenous participants compared to Indigenous participants reported having any moderate-to-high level of unmet needs (70% vs. 54%, p = 0.013) and the difference was consistently observed across non-matched characteristics. While concerns for caregivers, fear of recurrence and pain were central needs for both Indigenous participants and Non-Indigenous participants, there were some key differences in the specific unmet needs between groups. Physical issues including doing usual daily activities and dealing with fatigue were the top priorities for Non-Indigenous people, while money worries, dealing with psychological issues such as how to keep their spirit strong or hope about their future appeared to be priorities for Indigenous people. CONCLUSIONS: Variations in the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer may guide health professionals to target specific needs when preparing care plans.
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Atividades Cotidianas , Necessidades e Demandas de Serviços de Saúde , Havaiano Nativo ou Outro Ilhéu do Pacífico , Neoplasias/terapia , Austrália , Dor do Câncer/fisiopatologia , Dor do Câncer/psicologia , Dor do Câncer/terapia , Cuidadores , Comparação Transcultural , Status Econômico , Fadiga/fisiopatologia , Medo/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Recidiva Local de Neoplasia , Neoplasias/fisiopatologia , Neoplasias/psicologia , Classe SocialRESUMO
INTRODUCTION: Disparities in cancer outcomes between Indigenous and non-Indigenous people are well reported. Some Australian Indigenous communities' beliefs about cancer may influence health behaviours, support for those with cancer and ,ultimately, treatment outcomes. This project was instigated by request of a cultural adviser from a regional Queensland community and aims to make community perceptions of cancer visible, facilitate development of resources representing these perceptions and briefly evaluate the project from the community's perspective. METHODS: The project was guided by qualitative, participatory and visual research methodology. Community participation was engaged by identifying community champions who helped recruit interested community members and continued project momentum. The project was defined and driven by community, and a consensus decision making approach was used to select resources or activities to represent community perceptions of cancer and raise cancer awareness. Qualitative data were collected from yarning groups at two community forums and subsequent group sessions to explore and define community perceptions of cancer. Informed consent was obtained prior to audio-taped yarning groups. Data were also included from publicly available interviews broadcast on radio and television. All data about community perceptions of cancer and of the project were thematically analysed. Photovoice using cameras was the visual method chosen to capture images and stories representing community cancer beliefs. RESULTS: Three main themes were derived from thematic analysis of data collected about community perceptions of cancer, identified by participants as important to improving cancer outcomes: (1) silence in the community, (2) support is important for survivorship and (3) awareness of cancer and the importance of sharing positive stories. A consensus decision-making approach resulted in the community choosing two resources to stimulate community discussion about cancer, raise awareness and reduce stigma. These were creating a community quilt, with each quilt square representing community perceptions of cancer, and producing a community calendar, with messages promoting healthy behaviours and cancer screening. The overall project was viewed as valuable for facilitating and improving the conversation about cancer with family, friends, the broader community and health professionals. Group sessions were considered important for providing a shared, safe space for support, for asking health related questions and as an instigator to share cancer related knowledge and stories with others. CONCLUSION: Silence around cancer may influence awareness and discussion about cancer, screening participation and help-seeking behaviour in this community. In this project, engaging with the community created a safe space for conversation around a previously taboo topic, which could lead to improved screening and help seeking behaviour. The role of primary health care in reducing health disparities by partnering with community to conduct awareness and prevention activities and by providing culturally appropriate care for Indigenous people is emphasised.
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Atitude Frente a Saúde/etnologia , Serviços de Saúde do Indígena/organização & administração , Havaiano Nativo ou Outro Ilhéu do Pacífico/psicologia , Neoplasias/etnologia , Neoplasias/psicologia , Adulto , Informação de Saúde ao Consumidor/organização & administração , Feminino , Humanos , Masculino , Queensland , Percepção SocialRESUMO
INTRODUCTION: Indigenous Australians with cancer tend to be diagnosed with more aggressive and advanced-stage disease, receive less treatment, have poorer survival and lower quality of life than other Australians. Reducing these inequalities requires an understanding of the supportive care needs of this cancer group. This study aims to describe the type and extent of unmet supportive care needs of Indigenous Australian cancer patients. METHOD: A multicentre, cross-sectional study recruited 145 Indigenous adults diagnosed with cancer in the previous 5 years in four Australian states and territories. Using a culturally specific tool, unmet needs were assessed in four domains: 'physical and psychological', 'hospital care', 'information and communication' and 'practical and cultural'. Moderate to high unmet need is that which requires some or a lot more help to be addressed. RESULTS: Two-thirds (65%) of patients reported at least one moderate to high unmet need and 20% of patients had moderate to high unmet needs with five or more items. Overall, patients most commonly reported moderate to high unmet needs in the physical/psychological (46%) and practical/cultural domains (34%), than the information/communication (23%) and hospital care domains (16%). More specifically, 'money worries' was the most frequently reported moderate to high unmet need (20%). CONCLUSION: Most Indigenous Australians living with cancer experience unmet supportive care needs. Physical/psychological and practical/cultural concerns were identified as priority areas for Indigenous cancer patients. These findings may inform priority areas for intervention towards optimal care pathways for Indigenous Australians diagnosed and living with cancer.
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Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , Avaliação das Necessidades/estatística & dados numéricos , Neoplasias/terapia , Adulto , Idoso , Austrália , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Relações Profissional-Paciente , Apoio Social , Fatores SocioeconômicosRESUMO
OBJECTIVE: To identify factors associated with psychosocial, physical and practical difficulties of daily living and distress among cancer survivors from a regional area in Australia. DESIGN: Cross-sectional study. SETTING: Riverina region of southern New South Wales. PARTICIPANTS: The sample included 134 patients who completed treatment for breast, colorectal, lung or cancer at the Riverina Cancer Care Centre. MAIN OUTCOME MEASURES: Distress was assessed by the Distress Thermometer. Psychosocial, physical and practical difficulties of daily living were assessed by the Patient-Reported Outcomes Measurement Information System questionnaires. RESULTS: A high proportion of cancer survivors had abnormal scores for physical function, sleep disturbance, satisfaction with role, fatigue and pain interference, with many also displaying abnormal scores for anxiety, depression and distress. Survivors living in rural areas and those who had undergone surgery had higher odds of having abnormal scores for sleep disturbance than their counterparts. Living without a partner increased the odds of anxiety and depression. Having advanced disease increased the odds of anxiety and pain. Colorectal cancer and higher education were associated with depression. CONCLUSION: Monitoring for abnormal physical and psychosocial issues after cancer treatment is essential to maintain or improve psychosocial well-being during survivorship. When developing survivorship care plans for patients residing in regional centres, health professionals should consider availability of high-quality and accessible support services in regional areas of Australia.
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Sobreviventes de Câncer/estatística & dados numéricos , População Rural/estatística & dados numéricos , Atividades Cotidianas/psicologia , Ansiedade/epidemiologia , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Sobreviventes de Câncer/psicologia , Neoplasias Colorretais/psicologia , Neoplasias Colorretais/terapia , Estudos Transversais , Depressão/epidemiologia , Fadiga/epidemiologia , Feminino , Nível de Saúde , Humanos , Neoplasias Pulmonares/psicologia , Neoplasias Pulmonares/terapia , Masculino , Pessoa de Meia-Idade , New South Wales/epidemiologia , Dor/epidemiologia , Recuperação de Função Fisiológica , Transtornos do Sono-Vigília/epidemiologia , Estresse Psicológico/epidemiologia , Inquéritos e Questionários , Resultado do TratamentoRESUMO
PURPOSE: The purposes of the present study are to describe changes over time in the prevalence of unmet supportive care needs of Indigenous Australians newly diagnosed with cancer and to identify factors associated with greater needs at diagnosis. METHODS: Unmet needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) within 3 months and at 6 months post-diagnosis. Overall needs and specific need domains were modelled using generalized estimating equations. Associations between risk factors and moderate-high unmet needs at diagnosis were assessed using multivariable logistic regression analyses. RESULTS: Over half (54%) of the participants (n = 82) experienced at least one moderate-high unmet need at diagnosis which reduced to 34% at 6 months post-diagnosis. This improvement mainly reflected the decrease in needs from the physical/psychological domain (p = 0.042). The median overall unmet need score and most domain scores were significantly lower at 6 months. Eighteen percent experienced multiple (5+) moderate-high unmet needs at diagnosis (60% continued to report needs at 6 months). The top unmet needs at diagnosis were money worries (27%), concerns about the worries of those close to you (16%) and worry about your illness spreading/getting worse (15%). Having a higher education and having received cancer treatment in the last 30 days were significantly associated with greater needs at diagnosis. CONCLUSIONS: While unmet needs decreased over time, some patients continued to experience moderate-high unmet needs. This study indicates that needs should be monitored throughout the patient's journey. Coordination of support, particularly for those with multiple needs, may be important for this group.
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Necessidades e Demandas de Serviços de Saúde , Havaiano Nativo ou Outro Ilhéu do Pacífico , Neoplasias/etnologia , Neoplasias/terapia , Ansiedade/etnologia , Ansiedade/psicologia , Austrália/epidemiologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Neoplasias/epidemiologia , Prevalência , Estudos Prospectivos , Fatores de Risco , Apoio SocialRESUMO
BACKGROUND: Australians with cirrhosis have significant practical and psychosocial needs. This longitudinal study examined the association between supportive care needs and health service use and costs, and patient outcomes from June 2017 to December 2018. METHODS: The Supportive Needs Assessment tool for Cirrhosis (SNAC), quality of life (Chronic Liver Disease Questionnaire and Short Form 36), and distress (distress thermometer) were self-reported through an interview at recruitment (n=433). Clinical data were obtained from medical records and through linkage, and health service use and costs through linkage. Patients were grouped as by needs status. Rates of hospital admissions (per person days at risk) and costs were assessed by needs status [incidence rate ratios (IRR), Poisson regression]. Multivariable linear regression was used to assess the differences in SNAC scores by quality of life and distress. Multivariable models included Child-Pugh class, age, sex, recruitment hospital, living arrangements, place of residence, comorbidity burden, and primary liver disease etiology. RESULTS: In adjusted analyses, compared with patients with low/no needs, patients with unmet needs had more cirrhosis-related admissions (adjusted IRR=2.11, 95% CI=1.48-3.13; p<0.001), admissions through the emergency department (IRR=2.99, 95% CI=1.80-4.97, p<0.001), and emergency presentations (IRR=3.57, 95% CI=1.41-9.02; p<0.001). Total hospitalization costs for cirrhosis admissions were higher for those with unmet needs ($431,242 per person days at risk) compared with those with met needs ($87,363 per person days at risk, adjusted cost ratio=3.52, 95%CI=3.49-3.54; p<0.001). In multivariable analysis, increasing overall mean SNAC scores (higher needs) were correlated with poorer quality of life and higher level of distress (p<0.001 for all comparisons). CONCLUSIONS: Patients with cirrhosis and high unmet psychosocial needs and practical and physical needs have poor quality of life, high distress, and very high service use and costs, highlighting the importance of urgently addressing unmet needs.
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Cirrose Hepática , Qualidade de Vida , Humanos , Queensland/epidemiologia , Austrália/epidemiologia , Estudos Longitudinais , Cirrose Hepática/epidemiologia , Cirrose Hepática/terapia , Aceitação pelo Paciente de Cuidados de SaúdeRESUMO
Background: Psychosocial, lifestyle and practical needs are not routinely attended to during outpatient hepatology management, and little is known about the type and effectiveness of support services accessed by patients with cirrhosis. We quantified the type and use of community and allied health services in patients with cirrhosis. Methods: The study included 562 Australian adults with a diagnosis of cirrhosis. Health service use was assessed via questionnaire and via linkage to the Australian Medicare Benefits Schedule. Patient needs were assessed using the Supportive Needs Assessment tool for Cirrhosis (SNAC). Results: Although most patients (85.9%) used at least one community/allied health service for support with their liver disease, many reported requiring additional help with psychosocial (67.4%), lifestyle (34.3%) or practical needs (21.9%) that were not met by available services, or patients did not access services. A multidisciplinary care plan or case conference (in the 12 months prior to recruitment) was accessed by 48% of patients, 56.2% reported the use of a general practitioner for support with cirrhosis, and a dietician was the allied health clinician most accessed by patients (45.9%). Despite the high prevalence of psychosocial needs, there was relatively limited use of mental health and social work services (14.1% of patients reported the use of a psychologist), confirmed by a low prevalence of use of mental health services (17.7%) in the linked data. Conclusion: Patients with cirrhosis who have unmet complex physical and psychosocial needs require better strategies to increase their engagement with allied health and community services.
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BACKGROUND: Safe and appropriate use of medicines is essential to improve health outcomes in cirrhosis. However, little is known about the number and type of medicines dispensed to people with cirrhosis in Australia, as this predominantly occurs in the community. We aimed to characterise the prescriptions dispensed to people with cirrhosis and explore changes in the use of medication groups over time. METHODS: Pharmaceutical Benefits Scheme data between 1 January 2016 and 30 June 2020 was extracted for consenting CirCare participants (multi-site, prospective, observational study). Prescriptions dispensed from cirrhosis diagnosis until liver transplant or death were included. Safety classifications for dispensed medicines were defined using published evidence-based recommendations. The pattern of medication use was analysed in 6-monthly time intervals. Generalised estimating equations models were used to estimate the change in consumption of medicines over time. RESULTS: Five hundred twenty-two patients (mean age 60 years, 70% male, 34% decompensated at recruitment) were dispensed 89,615 prescriptions during the follow-up period, representing a median of 136 [interquartile range (IQR) 62-237] prescriptions and a median of 16 (IQR 11-23) unique medicines per patient (total n = 9306 medicines). The most commonly used medicines were proton pump inhibitors (PPIs) (dispensed at least once to 73% of patients), opioids (68%) and antibiotics (89%). Polypharmacy was prevalent, with 59-69% of observed participants in each time period dispensed five or more unique medicines. Prescription medication use increased over time (p < 0.001) independently of age, comorbidity burden and liver disease aetiology. The likelihood of taking PPIs, opioids, antidepressants and inhaled medicines also increased with each successive time period. Use of angiotensin therapies, metformin and statins differed over time between patients with compensated versus decompensated cirrhosis. General practitioners prescribed 69% of dispensed medicines, including a higher proportion of 'unsafe' and 'safety unknown' medicines compared with consultants/specialists (p < 0.001). CONCLUSIONS: Polypharmacy is common in people with cirrhosis and some medication groups may be overused. Pharmacovigilance is required and future medication safety efforts should target high-risk prescribing practices and promote medication rationalisation in the community.
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Background: Providing cultural education to health professionals is essential in improving the quality of care and outcomes for Aboriginal and Torres Strait Islander patients. This study reports the evaluation of a novel training workshop used as an intervention to improve communication with Aboriginal and Torres Strait Islander patients of persistent pain services. Methods: In this single-arm intervention study, health professionals undertook a one-day workshop, which included cultural capability and communication skills training based on a clinical yarning framework. The workshop was delivered across three adult persistent pain clinics in Queensland. At the end of the training, participants completed a retrospective pre/post evaluation questionnaire (5 points Likert scale, 1 = very low to 5 = very high), to rate their perceived importance of communication training, their knowledge, ability and confidence to communicate effectively. Participants also rated their satisfaction with the training and suggested improvements for future trainings. Results: Fifty-seven health professionals were trained (N = 57/111; 51% participation rate), 51 completed an evaluation questionnaire (n = 51/57; 90% response rate). Significant improvements in the perceived importance of communication training, knowledge, ability and confidence to effectively communicate with Aboriginal and Torres Strait Islander patients were identified (p < 0.001). The greatest increase was in the perceived confidence pre-training mean of 2.96 (SE = 0.11) to the post-training mean of 4.02 (SE = 0.09). Conclusion: This patient-centred communication training, delivered through a novel model that combines cultural capability and the clinical yarning framework applied to the pain management setting, was highly acceptable and significantly improved participants' perceived competence. This method is transferrable to other health system sectors seeking to train their clinical workforce with culturally sensitive communication skills.
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INTRODUCTION: Indigenous Australians experience more aggressive cancers and higher cancer mortality rates than other Australians. Cancer patients undergoing treatment are likely to access health services (e.g. social worker, cancer helpline, pain management services). To date Indigenous cancer patients' use of these services is limited. This paper describes the use of health services by Indigenous cancer patients. METHODS: Indigenous cancer patients receiving treatment were recruited at four major Queensland public hospitals (Royal Brisbane Women's Hospital, Princess Alexandra, Cairns Base Hospital and Townsville Hospital). Participants were invited to complete a structured questionnaire during a face-to-face interview which sought information about their use of community and allied health services. RESULTS: Of the 157 patients interviewed most were women (54.1%), of Aboriginal descent (73.9%), lived outer regional areas (40.1%) and had a mean age of 52.2 years. The most frequent cancer types were breast cancer (22.3%), blood related (14.0%), lung (12.1%) and gastroenterological (10.8%). More than half of the participants reported using at least one of the 'Indigenous Health Worker/Services' (76.4%), 'Allied Health Workers/Services' (72.6%) and 'Information Sources' (70.7%). Younger participants 19-39 years were more likely to use information sources (81.0%) than older participants who more commonly used community services (48.8%). The cancer patients used a median of three health services groups while receiving cancer treatment. CONCLUSIONS: Indigenous cancer patients used a range of health services whilst receiving treatment. Indigenous Health Workers/Services and Allied Health Workers/Services were the most commonly used services. However, there is a need for further systematic investigation into the health service utilization by Indigenous cancer patients.
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Serviços de Saúde/estatística & dados numéricos , Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , Neoplasias/terapia , Adulto , Idoso , Feminino , Disparidades em Assistência à Saúde/etnologia , Disparidades em Assistência à Saúde/estatística & dados numéricos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Queensland/epidemiologia , Inquéritos e Questionários , Adulto JovemRESUMO
Objectives: Ineffective communication between healthcare clinicians and Aboriginal and Torres Strait Islander patients with persistent pain is a significant barrier to optimal pain management. This manuscript is a study protocol and describes the development and evaluation methods of a tailored, culturally-informed training program, to improve clinicians' communication with patients. Study design: This is a single-arm, multicentre (2 metropolitan and 1 regional persistent pain service) intervention feasibility study that will be evaluated using mixed methods. Methods: A communication training program will be developed informed by qualitative interviews with key stakeholders, and adapt the patient-centred 'clinical yarning' framework for the Queensland context. Evaluation of the effectiveness of the training will involve the analysis of quantitative data collected at three study sites over a 12-month period. At the patient level, communication experience will be rated at differing times of the training rollout to reflect participants' experience of communication either prior to or following the treating clinician attending the communication training. At the clinician level, evaluation of the training program will be based on changes of ratings in the importance of training, knowledge, ability and confidence to communicate with Aboriginal and Torres Strait Islander patients; satisfaction, acceptance and relevance to their clinical practice. This study will be grounded in the needs and preferences of communication of Aboriginal and Torres Strait Islander people living with pain. Conclusion: It is hypothesized that the patient-centred intervention will have immediate benefits for patients, improving patient experience of care. This research will focus on an area of unmet need in addressing persistent pain.
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Poor communication is an important factor contributing to health disparity. This study sought to investigate clinicians' perspectives about communicating with Aboriginal and Torres Strait Islander patients with pain. This multi-site and mixed-methods study involved clinicians from three pain management services in Queensland, Australia. Clinicians completed a survey and participated in focus groups. Clinicians rated the importance of communication training, their knowledge, ability, and confidence in communicating with Aboriginal and Torres Strait Islander patients using a 5-point Likert scale. Rating scores were combined into low (scores 1-2); moderate (score 3) and high (scores 4-5). Informed by an interpretive description methodology, thematic analysis of focus group data was used to identify the communication needs and training preferences of clinicians. Overall (N = 64), 88% of clinicians rated the importance of communication training when supporting Aboriginal and Torres Strait Islander patients as "high". In contrast, far fewer clinicians rated as "high" their knowledge (28%), ability (25%) and confidence (28%) in effectively communicating with Aboriginal and Torres Strait Islander patients. Thematic analysis identified three areas of need: knowledge of Aboriginal and Torres Strait Islander cultures, health beliefs, and understanding cross-cultural cues. Communication skills can be learned and training, in the form of a tailored intervention to support quality engagement with Aboriginal and Torres Strait Islander patients, should combine cultural and communication aspects with biomedical knowledge.
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Serviços de Saúde do Indígena , Comunicação , Competência Cultural , Humanos , Havaiano Nativo ou Outro Ilhéu do Pacífico , DorRESUMO
PURPOSE: Understanding and responding to the supportive care needs of people with cirrhosis is essential to quality care. Indigenous Australians, Aboriginal and Torres Strait Islander people, are overrepresented amongst patients with cirrhosis. This study documented the nature and extent of supportive care needs of Indigenous Australians with cirrhosis, in comparison with non-Indigenous Australians. PATIENTS AND METHODS: The supportive care needs of adult patients diagnosed with cirrhosis attending public hospitals in Queensland were assessed through the Supportive Needs Assessment tool for Cirrhosis (SNAC). Patients indicated how much additional help they needed on four subscales: 1. psychosocial issues; 2. practical and physical needs; 3. information needs; and 4. lifestyle changes. We examined the rate of moderate-to-high unmet needs based on Indigenous status (Poisson regression; incidence rate ratio (IRR)). RESULTS: Indigenous (n=20) and non-Indigenous (n=438) patients included in the study had similar sociodemographic and clinical characteristics except for a lower educational level among Indigenous patients (p<0.01). Most Indigenous patients (85.0%) reported having moderate-to-high unmet needs with at least one item in the SNAC tool. Following adjustment for key sociodemographic and clinical factors, Indigenous patients had a greater rate of moderate-to-high unmet needs overall (IRR=1.5, 95% CI 1.31-1.72; p<0.001), and specifically for psychosocial issues (IRR=1.7, 95% CI 1.39-2.15; p<0.001), and practical and physical needs subscales (IRR=1.5, 95% CI 1.22-1.83; p<0.001), compared to non-Indigenous patients. CONCLUSION: Indigenous Australians with cirrhosis more frequently had moderate-to-high unmet supportive care needs than non-Indigenous patients. Specific targeting of culturally appropriate supportive care for psychosocial, practical and physical needs may optimize cirrhosis care and improve the quality of life for Indigenous Australians with cirrhosis.