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1.
Genet Med ; 25(11): 100942, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37489581

RESUMO

PURPOSE: To assess the relative cost-effectiveness of genomic testing compared with standard non-genomic diagnostic investigations in patients with suspected monogenic kidney disease from an Australian health care system perspective. METHODS: Diagnostic and clinical information was used from a national cohort of 349 participants. Simulation modelling captured diagnostic, health, and economic outcomes during a time horizon from clinical presentation until 3 months post-test results based on the outcome of cost per additional diagnosis and lifetime horizon based on cost per quality-adjusted life-year (QALY) gained. RESULTS: Genomic testing was Australian dollars (AU$) 1600 more costly per patient and led to an additional 27 diagnoses out of a 100 individuals tested, resulting in an incremental cost-effectiveness ratio of AU$5991 per additional diagnosis. Using a lifetime horizon, genomic testing resulted in an additional cost of AU$438 and 0.04 QALYs gained per individual compared with standard diagnostic investigations, corresponding to an incremental cost-effectiveness ratio of AU$10,823 per QALY gained. Sub-group analyses identified that the results were largely driven by the cost-effectiveness in glomerular diseases. CONCLUSION: Based on established or expected thresholds of cost-effectiveness, our evidence suggests that genomic testing is very likely to be cost saving for individuals with suspected glomerular diseases, whereas no evidence of cost-effectiveness was found for non-glomerular diseases.


Assuntos
Testes Genéticos , Humanos , Criança , Adulto , Análise Custo-Benefício , Austrália , Anos de Vida Ajustados por Qualidade de Vida , Simulação por Computador
4.
Kidney Int Rep ; 6(11): 2850-2861, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34805637

RESUMO

BACKGROUND: Despite the emergence of diagnostic and clinical utility evidence in nephrology, publicly funded access to genomic testing is restricted in most health care systems. To establish genomic sequencing as a clinical test, an evaluation of cost-effectiveness is urgently required. METHODS: An economic evaluation, informed by a primary clinical study and available clinical evidence and guidelines in nephrology, was performed to evaluate the cost-effectiveness and optimal timing of exome sequencing (ES) in adults and children with suspected monogenic glomerular diseases compared with nongenomic investigations (NGIs). Six diagnostic strategies reflecting current practice and recommended models of care in Australia were modeled: (i) NGIs, (ii) late gene panel followed by ES, (iii) late ES, (iv) early gene panel, (v) early gene panel followed by ES, and (vi) early ES. RESULTS: ES with targeted analysis achieved a diagnosis in 23 of 63 (36.5%) adults and 10 of 24 (41.6%) children. NGIs were estimated to diagnose 4.0% of children, with an average estimated cost of AU$6120 per child. Integrating ES as a first-line test in children was cost saving, with an incremental cost saving of AU$3230 per additional diagnosis compared with NGIs. In adults, NGIs was estimated to diagnose 8% of patients, with an average estimated cost of AU$1830 per person. In adults, integrating ES early resulted in an incremental cost per additional diagnosis of AU$5460 relative to NGIs. CONCLUSIONS: Early ES with targeted analysis was effective for diagnosing monogenic kidney disease, with substantial cost savings in children.

5.
BMJ Open ; 11(7): e047245, 2021 07 09.
Artigo em Inglês | MEDLINE | ID: mdl-34244267

RESUMO

OBJECTIVES: The Global Kidney Health Atlas (GKHA) is a multinational, cross-sectional survey designed to assess the current capacity for kidney care across all world regions. The 2017 GKHA involved 125 countries and identified significant gaps in oversight, funding and infrastructure to support care for patients with kidney disease, especially in lower-middle-income countries. Here, we report results from the survey for the second iteration of the GKHA conducted in 2018, which included specific questions about health financing and oversight of end-stage kidney disease (ESKD) care worldwide. SETTING: A cross-sectional global survey. PARTICIPANTS: Key stakeholders from 182 countries were invited to participate. Of those, stakeholders from 160 countries participated and were included. PRIMARY OUTCOMES: Primary outcomes included cost of kidney replacement therapy (KRT), funding for dialysis and transplantation, funding for conservative kidney management, extent of universal health coverage, out-of-pocket costs for KRT, within-country variability in ESKD care delivery and oversight systems for ESKD care. Outcomes were determined from a combination of desk research and input from key stakeholders in participating countries. RESULTS: 160 countries (covering 98% of the world's population) responded to the survey. Economic factors were identified as the top barrier to optimal ESKD care in 99 countries (64%). Full public funding for KRT was more common than for conservative kidney management (43% vs 28%). Among countries that provided at least some public coverage for KRT, 75% covered all citizens. Within-country variation in ESKD care delivery was reported in 40% of countries. Oversight of ESKD care was present in all high-income countries but was absent in 13% of low-income, 3% of lower-middle-income, and 10% of upper-middle-income countries. CONCLUSION: Significant gaps and variability exist in the public funding and oversight of ESKD care in many countries, particularly for those in low-income and lower-middle-income countries.


Assuntos
Falência Renal Crônica , Diálise Renal , Estudos Transversais , Países em Desenvolvimento , Acessibilidade aos Serviços de Saúde , Humanos , Falência Renal Crônica/terapia
6.
Kidney Int Suppl (2011) ; 11(2): e86-e96, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33981474

RESUMO

Oceania and South East Asia (OSEA) is a socioeconomically, culturally, and ethnically diverse region facing a rising epidemic of noncommunicable diseases, including chronic kidney disease (CKD). The second iteration of the International Society of Nephrology Global Kidney Health Atlas aimed to provide a comprehensive evaluation of kidney care in OSEA. Of the 30 countries/territories in OSEA, 15 participated in the survey, representing 98.5% of the region's population. The median prevalence of treated kidney failure in OSEA was 1352 per million population (interquartile range, 966-1673 per million population), higher than the global median of 787 per million population. Although the general availability, access, and quality of kidney replacement therapy (i.e., dialysis and transplantation) was high in OSEA, inequalities in accessibility and affordability of kidney replacement therapy across the region resulted in variability between countries. According to the survey results, in a third of the participating countries (mostly lower-income countries), less than half the patients with kidney failure were able to access dialysis, whereas it was readily available to all with minimal out-of-pocket costs in high-income countries; similar variability in access to transplantation was also recorded. Limitations in workforce and resources vary across the region and were disproportionately worse in lower-income countries. There was little advocacy for kidney disease, moderate use of registries, restricted CKD detection programs, and limited availability of routine CKD testing in some high-risk groups across the region. International collaborations, as seen in OSEA, are important initiatives to help close the gaps in CKD care provision across the region and should continue receiving support from the global nephrology community.

7.
Am J Kidney Dis ; 77(3): 326-335.e1, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-32800843

RESUMO

RATIONALE & OBJECTIVE: Hemodialysis (HD) is the most common form of kidney replacement therapy. This study aimed to examine the use, availability, accessibility, affordability, and quality of HD care worldwide. STUDY DESIGN: A cross-sectional survey. SETTING & PARTICIPANTS: Stakeholders (clinicians, policy makers, and consumer representatives) in 182 countries were convened by the International Society of Nephrology from July to September 2018. OUTCOMES: Use, availability, accessibility, affordability, and quality of HD care. ANALYTICAL APPROACH: Descriptive statistics. RESULTS: Overall, representatives from 160 (88%) countries participated. Median country-specific use of maintenance HD was 298.4 (IQR, 80.5-599.4) per million population (pmp). Global median HD use among incident patients with kidney failure was 98.0 (IQR, 81.5-140.8) pmp and median number of HD centers was 4.5 (IQR, 1.2-9.9) pmp. Adequate HD services (3-4 hours 3 times weekly) were generally available in 27% of low-income countries. Home HD was generally available in 36% of high-income countries. 32% of countries performed monitoring of patient-reported outcomes; 61%, monitoring of small-solute clearance; 60%, monitoring of bone mineral markers; 51%, monitoring of technique survival; and 60%, monitoring of patient survival. At initiation of maintenance dialysis, only 5% of countries used an arteriovenous access in almost all patients. Vascular access education was suboptimal, funding for vascular access procedures was not uniform, and copayments were greater in countries with lower levels of income. Patients in 23% of the low-income countries had to pay >75% of HD costs compared with patients in only 4% of high-income countries. LIMITATIONS: A cross-sectional survey with possibility of response bias, social desirability bias, and limited data collection preventing in-depth analysis. CONCLUSIONS: In summary, findings reveal substantial variations in global HD use, availability, accessibility, quality, and affordability worldwide, with the lowest use evident in low- and lower-middle-income countries.


Assuntos
Internacionalidade , Falência Renal Crônica/terapia , Padrões de Prática Médica , Diálise Renal , Derivação Arteriovenosa Cirúrgica , Custo Compartilhado de Seguro , Custos e Análise de Custo , Estudos Transversais , Países Desenvolvidos , Países em Desenvolvimento , Gastos em Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Nefrologia , Medidas de Resultados Relatados pelo Paciente , Qualidade da Assistência à Saúde , Inquéritos e Questionários , Transporte de Pacientes
8.
Am J Kidney Dis ; 77(3): 315-325, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-32800844

RESUMO

RATIONALE & OBJECTIVE: Approximately 11% of people with kidney failure worldwide are treated with peritoneal dialysis (PD). This study examined PD use and practice patterns across the globe. STUDY DESIGN: A cross-sectional survey. SETTING & PARTICIPANTS: Stakeholders including clinicians, policy makers, and patient representatives in 182 countries convened by the International Society of Nephrology between July and September 2018. OUTCOMES: PD use, availability, accessibility, affordability, delivery, and reporting of quality outcome measures. ANALYTICAL APPROACH: Descriptive statistics. RESULTS: Responses were received from 88% (n=160) of countries and there were 313 participants (257 nephrologists [82%], 22 non-nephrologist physicians [7%], 6 other health professionals [2%], 17 administrators/policy makers/civil servants [5%], and 11 others [4%]). 85% (n=156) of countries responded to questions about PD. Median PD use was 38.1 per million population. PD was not available in 30 of the 156 (19%) countries responding to PD-related questions, particularly in countries in Africa (20/41) and low-income countries (15/22). In 69% of countries, PD was the initial dialysis modality for≤10% of patients with newly diagnosed kidney failure. Patients receiving PD were expected to pay 1% to 25% of treatment costs, and higher (>75%) copayments (out-of-pocket expenses incurred by patients) were more common in South Asia and low-income countries. Average exchange volumes were adequate (defined as 3-4 exchanges per day or the equivalent for automated PD) in 72% of countries. PD quality outcome monitoring and reporting were variable. Most countries did not measure patient-reported PD outcomes. LIMITATIONS: Low responses from policy makers; limited ability to provide more in-depth explanations underpinning outcomes from each country due to lack of granular data; lack of objective data. CONCLUSIONS: Large inter- and intraregional disparities exist in PD availability, accessibility, affordability, delivery, and reporting of quality outcome measures around the world, with the greatest gaps observed in Africa and South Asia.


Assuntos
Acessibilidade aos Serviços de Saúde , Internacionalidade , Falência Renal Crônica/terapia , Diálise Peritoneal , Padrões de Prática Médica , Pessoal Administrativo , Custo Compartilhado de Seguro , Custos e Análise de Custo , Estudos Transversais , Atenção à Saúde , Países Desenvolvidos , Países em Desenvolvimento , Gastos em Saúde , Política de Saúde , Humanos , Nefrologistas , Nefrologia , Avaliação de Resultados em Cuidados de Saúde , Medidas de Resultados Relatados pelo Paciente , Médicos , Qualidade da Assistência à Saúde , Inquéritos e Questionários
9.
BMJ Open ; 9(8): e029541, 2019 08 05.
Artigo em Inglês | MEDLINE | ID: mdl-31383705

RESUMO

INTRODUCTION: Recent advances in genomic technology have allowed better delineation of renal conditions, the identification of new kidney disease genes and subsequent targets for therapy. To date, however, the utility of genomic testing in a clinically ascertained, prospectively recruited kidney disease cohort remains unknown. The aim of this study is to explore the clinical utility and cost-effectiveness of genomic testing within a national cohort of patients with suspected genetic kidney disease who attend multidisciplinary renal genetics clinics. METHODS AND ANALYSIS: This is a prospective observational cohort study performed at 16 centres throughout Australia. Patients will be included if they are referred to one of the multidisciplinary renal genetics clinics and are deemed likely to have a genetic basis to their kidney disease by the multidisciplinary renal genetics team. The expected cohort consists of 360 adult and paediatric patients recruited by December 2018 with ongoing validation cohort of 140 patients who will be recruited until June 2020. The primary outcome will be the proportion of patients who receive a molecular diagnosis via genomic testing (diagnostic rate) compared with usual care. Secondary outcomes will include change in clinical diagnosis following genomic testing, change in clinical management following genomic testing and the cost-effectiveness of genomic testing compared with usual care. ETHICS AND DISSEMINATION: The project has received ethics approval from the Melbourne Health Human Research Ethics Committee as part of the Australian Genomics Health Alliance protocol: HREC/16/MH/251. All participants will provide written informed consent for data collection and to undergo clinically relevant genetic/genomic testing. The results of this study will be published in peer-reviewed journals and will also be presented at national and international conferences.


Assuntos
Testes Genéticos , Nefropatias/genética , Projetos de Pesquisa , Austrália , Estudos de Coortes , Análise Custo-Benefício , Genômica , Humanos , Estudos Multicêntricos como Assunto , Estudos Observacionais como Assunto
10.
PLoS One ; 14(7): e0219685, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31306453

RESUMO

BACKGROUND: To address guideline-practice gaps and improve management of patients with both diabetes and chronic kidney disease (CKD), we involved patients, health professionals and patient advocacy groups in the co-design and implementation of an integrated diabetes-kidney service. OBJECTIVE: In this study, we explored the experiences of patients and health-care providers, within this integrated diabetes and kidney service. METHODS: 5 focus groups and 2 semi-structured interviews were conducted amongst attending patients, referring primary health professionals, and attending specialist health professionals. Maximal variation sampling was used for both patients and referring primary health professionals to ensure an equal representation of males and females, and patients of different CKD stages. All discussions were audiotaped and transcribed verbatim, before being thematically analysed independently by 2 researchers. RESULTS: The mean age (SD) for specialist health professionals, primary care professionals and patients who participated was 45 (11), 44 (15) and 68 (5) years with men being 50%, 80% and 76% of the participants respectively. Key strengths of the diabetes and kidney service were noted to be better integration of care and a perception of improved health and management of health. Whilst some aspects of access such as time between referral and initial appointment and having fewer appointments improved, other aspects such as in-clinic waiting times and parking remained problematic. Specialist health professionals noted that health professional education could be improved. Patient self-management was also noted by to be an issue with some patients requesting more information and some health professionals expressing difficulty in empowering some patients. CONCLUSIONS: Health professionals and patients reported that a co-designed integrated diabetes kidney service improved integration of care and improved health and management of health. However, some aspects of the process of care, health professional education and patient self-management remained challenging.


Assuntos
Complicações do Diabetes/terapia , Diabetes Mellitus/terapia , Pesquisa Qualitativa , Insuficiência Renal Crônica/terapia , Adulto , Idoso , Atitude do Pessoal de Saúde , Austrália/epidemiologia , Feminino , Grupos Focais , Acessibilidade aos Serviços de Saúde , Humanos , Rim , Masculino , Pessoa de Meia-Idade , Modelos Organizacionais , Nefrologia/organização & administração , Guias de Prática Clínica como Assunto , Atenção Primária à Saúde/organização & administração , Encaminhamento e Consulta , Insuficiência Renal Crônica/complicações , Autocuidado , Especialização
11.
BMC Nephrol ; 20(1): 113, 2019 04 02.
Artigo em Inglês | MEDLINE | ID: mdl-30940170

RESUMO

BACKGROUND: Self-management education needs have not been assessed in patients with complex co-morbid conditions such as diabetes and chronic kidney disease (CKD). The objectives of this study were to 1) determine the self-management education needs for patients with co-morbid diabetes and CKD and 2) co-develop an educational resource meeting the self-management education needs of patients with co-morbid diabetes and CKD. METHODS: Patients with co-morbid diabetes and CKD attending a co-designed, patient-centred outpatient diabetes and kidney clinic at a tertiary metropolitan hospital were recruited for semi-structured interviews. Maximal variation sampling was used, ensuring adequate representation of different gender, age, diabetes duration and stage of CKD. Data were thematically analysed using grounded theory. RESULTS: Forty-two patients participated. Most were male (67%) and the mean age was 64.8 (11.1) years. The majority of patients preferred an educational resource in the form of a Digital Versatile Disc (DVD) and they thought that current education could be improved. In particular patients wanted further education on 1) management of diabetes and kidney disease (including nutrition and lifestyle, and prevention of the progression of kidney disease) and 2) complications of comorbid diabetes and kidney disease. CONCLUSION: Patients with co-morbid diabetes and kidney disease have education gaps on the management of, and complications of diabetes and kidney disease. Interventions aimed at improving patient education need to be delivered through education resources co-developed by patients and health staff. A targeted education resource in the form of a DVD, addressing these needs, may potentially close these gaps.


Assuntos
Complicações do Diabetes/epidemiologia , Diabetes Mellitus/epidemiologia , Educação de Pacientes como Assunto/métodos , Insuficiência Renal Crônica/epidemiologia , Autocuidado , Autogestão/educação , Austrália , Comorbidade , Feminino , Grupos Focais , Teoria Fundamentada , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Preferência do Paciente/estatística & dados numéricos , Pesquisa Qualitativa , Alocação de Recursos , Autocuidado/métodos , Autocuidado/psicologia
12.
Nephrology (Carlton) ; 24(12): 1214-1224, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30663163

RESUMO

AIM: Patients with autosomal dominant polycystic kidney disease (ADPKD) are at increased risk of premature mortality, morbidities and complications, which severely impair quality of life. However, patient-centered outcomes are not consistently reported in trials in ADPKD, which can limit shared decision-making. We aimed to identify outcomes important to patients and caregivers and the reasons for their priorities. METHODS: Nominal group technique was adopted involving patients with ADPKD and caregivers who were purposively selected from eight centres across Australia, France and the Republic of Korea. Participants identified, ranked and discussed outcomes for trials in ADPKD. We calculated an importance score (0-1) for each outcome and conducted thematic analyses. RESULTS: Across 17 groups, 154 participants (121 patients, 33 caregivers) aged 19 to 78 (mean 54.5 years) identified 55 outcomes. The 10 highest ranked outcomes were: kidney function (importance score 0.36), end-stage kidney disease (0.32), survival (0.21), cyst size/growth (0.20), cyst pain/bleeding (0.18), blood pressure (0.17), ability to work (0.16), cerebral aneurysm/stroke (0.14), mobility/physical function (0.12), and fatigue (0.12). Three themes were identified: threatening semblance of normality, inability to control and making sense of diverse risks. CONCLUSION: For patients with ADPKD and their caregivers, kidney function, delayed progression to end-stage kidney disease and survival were the highest priorities, and were focused on achieving normality, and maintaining control over health and lifestyle. Implementing these patient-important outcomes may improve the meaning and relevance of trials to inform clinical care in ADPKD.


Assuntos
Efeitos Psicossociais da Doença , Falência Renal Crônica , Estilo de Vida , Avaliação de Resultados da Assistência ao Paciente , Rim Policístico Autossômico Dominante , Qualidade de Vida , Atitude Frente a Saúde , Austrália , Cuidadores/psicologia , Progressão da Doença , Estudos de Avaliação como Assunto , Feminino , França , Humanos , Falência Renal Crônica/etiologia , Falência Renal Crônica/mortalidade , Testes de Função Renal/psicologia , Masculino , Pessoa de Meia-Idade , Rim Policístico Autossômico Dominante/diagnóstico , Rim Policístico Autossômico Dominante/epidemiologia , Rim Policístico Autossômico Dominante/fisiopatologia , Rim Policístico Autossômico Dominante/psicologia , Intervalo Livre de Progressão , República da Coreia
13.
Health Qual Life Outcomes ; 16(1): 215, 2018 Nov 19.
Artigo em Inglês | MEDLINE | ID: mdl-30454062

RESUMO

BACKGROUND: Little is known about how patient reported barriers to health care impact the quality of life (HRQoL) of patients with comorbid disease. We investigated patient reported barriers to health care and low physical and mental well-being among people with diabetes and chronic kidney disease (CKD). METHODS: Adults with diabetes and CKD (estimated Glomerular Filtration Rate < 60 ml/min/1.73m2) were recruited and completed a questionnaire on barriers to health care, the 12-Item HRQoL Short Form Survey and clinical assessment. Low physical and mental health status were defined as mean scores < 50. Logistic regression models were used. RESULTS: Three hundred eight participants (mean age 66.9 ± 11 years) were studied. Patient reported 'impact of the disease on family and friends' (OR 2.07; 95% CI 1.14 to 3.78), 'feeling unwell' (OR 4.23; 95% CI 1.45 to 12.3) and 'having other life stressors that make self-care a low priority' (OR 2.59; 95% CI 1.20 to 5.61), were all associated with higher odds of low physical health status. Patient reported 'feeling unwell' (OR 2.92; 95% CI 1.07 to 8.01), 'low mood' (OR 2.82; 95% CI 1.64 to 4.87) and 'unavailability of home help' (OR 1.91; 95% CI 1.57 to 2.33) were all associated with higher odds of low mental health status. The greater the number of patient reported barriers the higher the odds of low mental health but not physical health status. CONCLUSIONS: Patient reported barriers to health care were associated with lower physical and mental well-being. Interventions addressing these barriers may improve HRQoL among people with comorbid diabetes and CKD.


Assuntos
Diabetes Mellitus/psicologia , Acessibilidade aos Serviços de Saúde , Nível de Saúde , Qualidade de Vida , Insuficiência Renal Crônica/psicologia , Adulto , Idoso , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Insuficiência Renal Crônica/complicações , Inquéritos e Questionários
15.
Kidney Int Suppl (2011) ; 8(2): 41-51, 2018 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30675438

RESUMO

Reliable governance and health financing are critical to the abilities of health systems in different countries to sustainably meet the health needs of their peoples, including those with kidney disease. A comprehensive understanding of existing systems and infrastructure is therefore necessary to globally identify gaps in kidney care and prioritize areas for improvement. This multinational, cross-sectional survey, conducted by the ISN as part of the Global Kidney Health Atlas, examined the oversight, financing, and perceived quality of infrastructure for kidney care across the world. Overall, 125 countries, comprising 93% of the world's population, responded to the entire survey, with 122 countries responding to questions pertaining to this domain. National oversight of kidney care was most common in high-income countries while individual hospital oversight was most common in low-income countries. Parts of Africa and the Middle East appeared to have no organized oversight system. The proportion of countries in which health care system coverage for people with kidney disease was publicly funded and free varied for AKI (56%), nondialysis chronic kidney disease (40%), dialysis (63%), and kidney transplantation (57%), but was much less common in lower income countries, particularly Africa and Southeast Asia, which relied more heavily on private funding with out-of-pocket expenses for patients. Early detection and management of kidney disease were least likely to be covered by funding models. The perceived quality of health infrastructure supporting AKI and chronic kidney disease care was rated poor to extremely poor in none of the high-income countries but was rated poor to extremely poor in over 40% of low-income countries, particularly Africa. This study demonstrated significant gaps in oversight, funding, and infrastructure supporting health services caring for patients with kidney disease, especially in low- and middle-income countries.

16.
Contrib Nephrol ; 190: 146-155, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28535526

RESUMO

Home hemodialysis (HD) is undergoing a resurgence. A major driver of this is economics, however, providers are also encouraged by a combination of excellent patient outcomes and patient experiences as well as the development of newer technologies that offer ease of use. Home HD offers significant advantages in flexible scheduling and the practical implementation of extended hours dialysis. This paper explores the reasons why home HD is making a comeback and strives to offer approaches to improve the uptake of this dialysis modality.


Assuntos
Hemodiálise no Domicílio/métodos , Hemodiálise no Domicílio/economia , Humanos , Tecnologia , Resultado do Tratamento
17.
Nephrology (Carlton) ; 22(2): 107-113, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27161902

RESUMO

BACKGROUND AND AIMS: People with end-stage kidney disease receiving haemodialysis are restricted to holidays where dialysis services are readily available. Holiday dialysis in regional, rural and remote areas is particularly challenging. The aims of this study were to evaluate the wellbeing of those who received dialysis in a holiday haemodialysis bus and to measure patient well-being with that of a comparable cohort of haemodialysis patients. METHODS: A three machine haemodialysis bus, the Big Red Kidney Bus, was built to enable people, their families and carers to take holidays across a range of tourist destinations in Victoria, Australia. Measures included pre-post subjective well-being, dialysis symptoms and mood questionnaires complemented by post semi-structured telephone interviews. RESULTS: Participating holidaymakers were positive about the haemodialysis bus service and the standard of care experienced. They reported decreased dialysis side effects of fatigue, muscle cramp and dry skin. The overall number of reported symptoms decreased, and the perceived level of bother associated with symptoms also decreased. No changes in subjective well-being and mood were detected. Mean Personal Wellbeing Index scores were significantly higher than in a comparative haemodialysis sample. CONCLUSION: The Big Red Kidney Bus provided a safe and feasible holiday dialysis service. Holidaymakers' well-being was reflected by the decreased dialysis patient side effects.


Assuntos
Afeto , Efeitos Psicossociais da Doença , Acessibilidade aos Serviços de Saúde , Férias e Feriados , Falência Renal Crônica/terapia , Veículos Automotores , Qualidade de Vida , Diálise Renal , Viagem , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Viabilidade , Feminino , Humanos , Entrevistas como Assunto , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Diálise Renal/efeitos adversos , Inquéritos e Questionários , Resultado do Tratamento , Vitória
18.
J Psychosom Res ; 91: 12-19, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-27894457

RESUMO

OBJECTIVES: The Coping Strategies Inventory-Short Form (CSI-SF) measures four coping strategies based on 16 items: 4 items each indicating problem- vs. emotion-focused engagement or disengagement. Here we provide the first assessment of reliability and construct validity of the CSI-SF among hemodialysis patients across 13 countries. METHODS: The CSI-SF was completed by patients in 9 languages in phase 4 of the Dialysis Outcomes and Practice Patterns Study (2009-11). Cronbach's alpha was used to assess internal consistency. Exploratory and confirmatory factor analyses were applied to assess the factor structure of the CSI-SF by country and language. CSI-SF data were analyzed from 7201 patients (60% male; median age 62.5 [range 18-96] years). RESULTS: Good internal consistency (α=0.56-0.80) was seen for three scales in English (US, UK, Canada, Australia, New Zealand), German, and Swedish versions. The fourth scale was internally consistent if two items were dropped. In these countries, both exploratory and confirmatory factor analyses indicated a factor structure consistent with the four CSI-SF scales. Other language versions showed a factor structure inconsistent with these four scales. CONCLUSION: The slightly modified English, German, and Swedish versions of the CSI-SF are reliable and valid instruments for measuring coping strategies in hemodialysis patients.


Assuntos
Adaptação Psicológica , Comparação Transcultural , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Inventário de Personalidade/estatística & dados numéricos , Psicometria/estatística & dados numéricos , Diálise Renal/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Austrália , Canadá , Estudos de Coortes , Efeitos Psicossociais da Doença , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Estudos Prospectivos , Reprodutibilidade dos Testes , Suécia , Adulto Jovem
19.
PLoS One ; 11(1): e0146615, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26730708

RESUMO

BACKGROUND: Multi-morbidity due to diabetes and chronic kidney disease (CKD) remains challenging for current health-systems, which focus on single diseases. As a first step toward health-care improvement, we explored the perspectives of patients and their carers on factors influencing the health-care of those with co-morbid diabetes and CKD. METHODS: In this qualitative study participants with co-morbid diabetes and CKD were purposively recruited using maximal variation sampling from 4 major tertiary health-services from 2 of Australia's largest cities. Separate focus groups were conducted for patients with CKD stages 3, 4 and 5. Findings were triangulated with semi-structured interviews of carers of patients. Discussions were transcribed verbatim and thematically analysed. RESULTS: Twelve focus groups with 58 participants and 8 semi-structured interviews of carers were conducted. Factors influencing health-care of co-morbid diabetes and CKD grouped into patient and health service level factors. Key patient level factors identified were patient self-management, socio-economic situation, and adverse experiences related to co-morbid diabetes and CKD and its treatment. Key health service level factors were prevention and awareness of co-morbid diabetes and CKD, poor continuity and coordination of care, patient and carer empowerment, access and poor recognition of psychological co-morbidity. Health-service level factors varied according to CKD stage with poor continuity and coordination of care and patient and carer empowerment emphasized by participants with CKD stage 4 and 5, and access and poor recognition of psychological co-morbidity emphasised by participants with CKD stage 5 and carers. CONCLUSIONS: According to patients and their carers the health-care of co-morbid diabetes and CKD may be improved via a preventive, patient-centred health-care model which promotes self-management and that has good access, continuity and coordination of care and identifies and manages psychological morbidity.


Assuntos
Cidades , Diabetes Mellitus/terapia , Pesquisas sobre Atenção à Saúde/métodos , Insuficiência Renal Crônica/terapia , Idoso , Idoso de 80 Anos ou mais , Austrália/epidemiologia , Cuidadores/estatística & dados numéricos , Comorbidade , Diabetes Mellitus/epidemiologia , Feminino , Grupos Focais , Pesquisas sobre Atenção à Saúde/estatística & dados numéricos , Serviços de Saúde/estatística & dados numéricos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Insuficiência Renal Crônica/epidemiologia , Autocuidado/métodos , Autocuidado/estatística & dados numéricos , Inquéritos e Questionários , Centros de Atenção Terciária/estatística & dados numéricos
20.
Semin Dial ; 28(2): 147-54, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25481976

RESUMO

Since their inception in the 1960s, home-based dialysis therapies have been viable alternatives to conventional thrice weekly in center hemodialysis. In spite of this, uptake of these therapies has been steadily declining over past decades with utilization varying globally; dependent on training support, funding models, and prevailing Nephrologist beliefs. In the Australian context, home dialysis (predominantly peritoneal dialysis and extended hours nocturnal hemodialysis) is now again increasing in popularity--with enthusiasm driven not only by evidence of an array of physiological and psychological patient benefit but also significant economic advantage: critical in the current climate where dialysis therapies in Australia take approximately $1 billion dollars per year from the healthcare budget. When assessing the significant advantages of home-based therapies, it is important to consider not only the increasing body of evidence around improved survival but also that for dramatically better health-related quality of life, decreased economic burden and the overall benefits of undertaking treatment in the home. With patient-centered care an increasingly important aspect of our decision making paradigm, home-based dialysis should be considered as the default option in all patients transitioning to renal replacement therapy.


Assuntos
Hemodiálise no Domicílio/métodos , Falência Renal Crônica/terapia , Transplante de Rim , Assistência Centrada no Paciente/economia , Cuidados Pós-Operatórios/economia , Análise Custo-Benefício , Hemodiálise no Domicílio/economia , Humanos
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