RESUMO
BACKGROUND: Adherence to complex regimens for people with chronic kidney disease (CKD) and diabetes is often poor. Interventions to enhance adherence require intensive education and behavioural counselling. However, whether the existing evidence is scientifically rigorous and can support recommendations for routine use of educational programmes in people with CKD and diabetes is still unknown. This is an update of a review first published in 2011. OBJECTIVES: To evaluate the benefits and harms of education programmes for people with CKD and diabetes. SEARCH METHODS: We searched the Cochrane Kidney and Transplant Register of Studies up to 19 July 2024 using search terms relevant to this review. Studies in the Register are identified through searches of CENTRAL, MEDLINE, and EMBASE, conference proceedings, the International Clinical Trials Registry Platform (ICTRP) Search Portal, and ClinicalTrials.gov. SELECTION CRITERIA: We included randomised controlled trials (RCTs) and quasi-RCTs investigating the benefits and harms of educational programmes (information and behavioural instructions and advice given by a healthcare provider, who could be a nurse, pharmacist, educator, health professional, medical practitioner, or healthcare provider, through verbal, written, audio-recording, or computer-aided modalities) for people 18 years and older with CKD and diabetes. DATA COLLECTION AND ANALYSIS: Two authors independently screened the literature, determined study eligibility, assessed quality, and extracted and entered data. We expressed dichotomous outcomes as risk ratios (RR) with 95% confidence intervals (CI) and continuous data as mean difference (MD) with 95% CI. Data were pooled using the random-effects model. The certainty of the evidence was assessed using the Grades of Recommendation, Assessment, Development and Evaluation (GRADE) approach. MAIN RESULTS: Eight studies (13 reports, 840 randomised participants) were included. The overall risk of bias was low for objective outcomes and attrition bias, unclear for selection bias, reporting bias and other biases, and high for subjective outcomes. Education programmes compared to routine care alone probably decrease glycated haemoglobin (HbA1c) (4 studies, 467 participants: MD -0.42%, 95% CI -0.53 to -0.31; moderate certainty evidence; 13.5 months follow-up) and may decrease total cholesterol (179 participants: MD -0.35 mmol/L, 95% CI -0.63 to -00.07; low certainty evidence) and low-density lipoprotein (LDL) cholesterol (179 participants: MD -0.40 mmol/L, 95% CI -0.65 to -0.14; low certainty evidence) at 18 months of follow-up. One study (83 participants) reported education programmes for people receiving dialysis who have diabetes may improve the diabetes knowledge of diagnosis, monitoring, hypoglycaemia, hyperglycaemia, medication with insulin, oral medication, personal health habits, diet, exercise, chronic complications, and living with diabetes and coping with stress (all low certainty evidence). There may be an improvement in the general knowledge of diabetes at the end of the intervention and at the end of the three-month follow-up (one study, 97 participants; low certainty evidence) in people with diabetes and moderately increased albuminuria (A2). In participants with diabetes and moderately increased albuminuria (A2) (one study, 97 participants), education programmes may improve a participant's beliefs in treatment effectiveness and total self-efficacy at the end of five weeks compared to routine care (low certainty evidence). Self-efficacy for in-home blood glucose monitoring and beliefs in personal control may increase at the end of the three-month follow-up (low certainty evidence). There were no differences in other self-efficacy measures. One study (100 participants) reported an education programme may increase change in behaviour for general diet, specific diet and home blood glucose monitoring at the end of treatment (low certainty evidence); however, at the end of three months of follow-up, there may be no difference in any behaviour change outcomes (all low certainty evidence). There were uncertain effects on death, serious hypoglycaemia, and kidney failure due to very low certainty evidence. No data was available for changes in kidney function (creatinine clearance, serum creatinine, doubling of serum creatinine or proteinuria). For an education programme plus multidisciplinary, co-ordinated care compared to routine care, there may be little or no difference in HbA1c, kidney failure, estimated glomerular filtration rate (eGFR), systolic or diastolic blood pressure, hypoglycaemia, hyperglycaemia, and LDL and high-density lipoprotein (HDL) cholesterol (all low certainty evidence in participants with type-2 diabetes mellitus and documented advanced diabetic nephropathy). There were no data for death, patient-orientated measures, change in kidney function (other than eGFR and albuminuria), cardiovascular disease morbidity, quality of life, or adverse events. AUTHORS' CONCLUSIONS: Education programmes may improve knowledge of some areas related to diabetes care and some self-management practices. Education programmes probably decrease HbA1c in people with CKD and diabetes, but the effect on other clinical outcomes is unclear. This review only included eight studies with small sample sizes. Therefore, more randomised studies are needed to examine the efficacy of education programmes on important clinical outcomes in people with CKD and diabetes.
Assuntos
Educação de Pacientes como Assunto , Ensaios Clínicos Controlados Aleatórios como Assunto , Insuficiência Renal Crônica , Humanos , Educação de Pacientes como Assunto/métodos , Insuficiência Renal Crônica/terapia , Viés , Diabetes Mellitus/terapia , Hemoglobinas Glicadas/metabolismo , Diabetes Mellitus Tipo 2/terapia , Adesão à Medicação , Qualidade de VidaRESUMO
RATIONALE & OBJECTIVE: Patients with chronic kidney disease (CKD) are at an increased risk for premature death, cardiovascular disease, and burdensome symptoms that impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in CKD. STUDY DESIGN: Focus groups with nominal group technique. SETTING & PARTICIPANTS: Adult patients with CKD (all stages) and caregivers in the United States, Australia, and United Kingdom. ANALYTICAL APPROACH: Participants identified, ranked, and discussed outcomes that were important during the stages of CKD before kidney replacement therapy. For each outcome, we calculated a mean importance score (scale, 0-1). Qualitative data were analyzed using thematic analysis. RESULTS: 67 (54 patients, 13 caregivers) participated in 10 groups and identified 36 outcomes. The 5 top-ranked outcomes for patients were kidney function (importance score, 0.42), end-stage kidney disease (0.29), fatigue (0.26), mortality (0.25), and life participation (0.20); and for caregivers, the top 5 outcomes were life participation (importance score, 0.38), kidney function (0.37), mortality (0.23), fatigue (0.21), and anxiety (0.20). Blood pressure, cognition, and depression were consistently ranked in the top 10 outcomes across role (patient/caregiver), country, and treatment stage. Five themes were identified: re-evaluating and reframing life, intensified kidney consciousness, battling unrelenting and debilitating burdens, dreading upheaval and constraints, and taboo and unspoken concerns. LIMITATIONS: Only English-speaking participants were included. CONCLUSIONS: Patients and caregivers gave highest priority to kidney function, mortality, fatigue, life participation, anxiety, and depression. Consistent reporting of these outcomes in research may inform shared decision making based on patient and caregiver priorities in CKD.
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Cuidadores/psicologia , Grupos Focais , Avaliação de Resultados da Assistência ao Paciente , Qualidade de Vida , Insuficiência Renal Crônica/epidemiologia , Adulto , Idoso , Austrália/epidemiologia , Técnica Delphi , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Morbidade/tendências , Prognóstico , Reino Unido/epidemiologia , Estados Unidos/epidemiologiaRESUMO
AIM: Percutaneous renal biopsy is often essential for providing reliable diagnostic and prognostic information for people with suspected kidney disease, however the procedure can lead to complications and concerns among patients. This study aims to identify and integrate patient priorities and perspectives into the Kidney Health Australia - Caring for Australasians with Renal Impairment clinical practice guidelines for renal biopsy, to ensure patient-relevance. METHODS: We convened a workshop, consisting of three simultaneous focus groups and a plenary session, with 10 patients who had undergone a renal biopsy and seven caregivers. Topics and outcomes prioritized by patients and their caregivers were compared to those identified by the guideline working group, which was comprised of seven nephrologists. Transcripts and flipcharts were analyzed thematically to identify the reasons for participants' choices. RESULTS: In total, 34 topics/outcomes were identified, 14 of which were common to the list of 28 previously identified by the guideline working group. Most of the new topics identified by patients/caregivers were related to communication and education, psychosocial support, and self-management. We identified five themes underpinning the reasons for topic and outcome selection: alleviating anxiety and unnecessary distress, minimizing discomfort and disruption, supporting family and caregivers, enabling self-management, and protecting their kidney. A new topic on patient care and education was added to the guideline as a result. CONCLUSIONS: Patient and caregiver involvement in developing guidelines on renal biopsy ensured that their concerns and needs for education, psychosocial support, and self-management were explicitly addressed; enabling a patient-centred approach to renal biopsies.
Assuntos
Cuidadores/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Nefropatias/patologia , Rim/patologia , Assistência Centrada no Paciente/normas , Pacientes/psicologia , Guias de Prática Clínica como Assunto/normas , Adulto , Idoso , Cuidadores/educação , Consenso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Assistência Centrada no Paciente/métodos , Autocuidado/normas , Apoio SocialRESUMO
AIM: Diabetes, hypertension and smoking may contribute to the development and progression of chronic kidney disease (CKD) and its complications. The aim of this study was to assess patients' awareness and beliefs about these and other risk factors associated with CKD. METHODS: Participants with CKD Stages 1-5 were purposively sampled for participation in a mixed methods study. Focus group participants completed a survey on CKD risk factors and discussed the reasons for their choices. Thematic analysis was used to analyse the qualitative data. RESULTS: Of the 38 participants, the proportion who identified hypertension, family history, diabetes and obesity as risk factors for CKD were 89%, 87%, 87% and 70% respectively. Only 54% and 38% recognized that smoking and Aboriginal or Torres Strait Islander status were risk factors. Participants considered the risks of heart attack, stroke and premature mortality to be 20-40% lower in people with CKD than those with diabetes or pre-existing cardiovascular disease. Five themes were identified: invisibility (lack of signs and symptoms of CKD), invincibility (participants did not feel they were at risk), lacking awareness (identified not knowing much about their disease), cumulative comorbidities (concerned about the increased risks of associated diseases) and inevitability of death (there is no cure for CKD). CONCLUSION: Participants had good understanding of some risk factors for CKD (hypertension and diabetes) but limited understanding of others. Awareness of comorbidities was also less than for other chronic conditions. Compared with diabetes and cardiovascular disease, CKD was perceived to pose less of a threat to life. Patient education that addresses CKD risk factors, comorbidities and outcomes may increase awareness and foster better self-management for people with CKD.
Assuntos
Conscientização , Conhecimentos, Atitudes e Prática em Saúde , Pacientes/psicologia , Insuficiência Renal Crônica/epidemiologia , Insuficiência Renal Crônica/psicologia , Adulto , Idoso , Atitude Frente a Morte , Comorbidade , Diabetes Mellitus/epidemiologia , Diabetes Mellitus/psicologia , Feminino , Grupos Focais , Humanos , Hipertensão/epidemiologia , Hipertensão/psicologia , Masculino , Pessoa de Meia-Idade , New South Wales , Percepção , Pesquisa Qualitativa , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/mortalidade , Medição de Risco , Fatores de Risco , Fumar/efeitos adversos , Fumar/epidemiologia , Fumar/psicologia , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Preventing progression from earlier stages of chronic kidney disease (CKD) to end-stage kidney disease and minimizing the risk for cardiovascular events and other complications is central to the management of CKD. Patients' active participation in their own care is critical, but may be limited by their lack of awareness and understanding of CKD. We aimed to evaluate educational interventions for primary and secondary prevention of CKD. STUDY DESIGN: Systematic review. Electronic databases were searched to December 2015, with study quality assessed using the Cochrane Collaboration risk-of-bias tool. SETTING & POPULATION: People with CKD stages 1 to 5 in community and hospital settings (studies with only patients with CKD stage 5, kidney transplant recipients irrespective of glomerular filtration rate, or patients receiving dialysis were excluded). SELECTION CRITERIA FOR STUDIES: Randomized controlled trials and nonrandomized studies of educational interventions. INTERVENTIONS: Educational strategies in people with CKD. OUTCOMES: Knowledge, self-management, quality-of-life, and clinical end points. RESULTS: 26 studies (12 trials, 14 observational studies) involving 5,403 participants were included. Risk of bias was high in most studies. Interventions were multifaceted, including face-to-face teaching (26 studies), written information (20 studies), and telephone follow-up (13 studies). 20 studies involved 1-on-1 patient/educator interaction and 14 incorporated group sessions. 9 studies showed improved outcomes for quality of life, knowledge, and self-management; 9 had improved clinical end points; and 2 studies showed improvements in both patient-reported and clinical outcomes. Characteristics of effective interventions included teaching sessions that were interactive and workshops/practical skills (13/15 studies); integrated negotiated goal setting (10/13 studies); involved groups of patients (12/14 studies), their families (4/4 studies), and a multidisciplinary team (6/6 studies); and had frequent (weekly [4/5 studies] or monthly [7/7 studies]) participant/educator encounters. LIMITATIONS: A meta-analysis was not possible due to heterogeneity of the interventions and outcomes measured. CONCLUSIONS: Well-designed, interactive, frequent, and multifaceted educational interventions that include both individual and group participation may improve knowledge, self-management, and patient outcomes.
Assuntos
Educação de Pacientes como Assunto , Insuficiência Renal Crônica/terapia , HumanosRESUMO
AIM: This study aimed to identify consumer perspectives on topics and outcomes to integrate in the Kidney Health Australia Caring for Australasians with Renal Impairment (KHA-CARI) clinical practice guidelines on autosomal-dominant polycystic kidney disease (ADPKD). METHODS: A workshop involving three concurrent focus groups with 18 consumers (patients with ADPKD (n = 15), caregivers (n = 3)) was convened. Guideline topics, interventions and outcomes were identified, and integrated into guideline development. Thematic analysis was used to analyse the reasons for their choices. RESULTS: Twenty-two priority topics were identified, with most focussed on non-pharmacological management (diet, fluid intake, physical activity, complementary medicine), pain management and psychosocial care (mental health, counselling, cognitive and behavioural training, education, support groups). They also identified 26 outcomes including quality of life (QoL), progression of kidney disease, kidney function, cyst growth and nephrotoxity. Almost all topics and outcomes suggested were identified by health professionals with the exception of five topics/outcomes. Six themes reflected reasons for their choices: clarifying ambiguities, resolving debilitating pain, concern for family, preparedness for the future, taking control and significance of impact. CONCLUSION: Although there was considerable concordance between the priority topics and outcomes of health professionals and consumers for guidelines of ADPKD, there was also important discordance with consumers focused on fewer issues, but particularly on lifestyle, psychosocial support, pain, and QoL and renal outcomes. Active consumer engagement in guidelines development can help to ensure the inclusion of patient-centred recommendations, which may lead to better management of disease progression, symptoms, complications, and psychosocial impact.
Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Nefrologia/normas , Participação do Paciente , Assistência Centrada no Paciente/normas , Percepção , Rim Policístico Autossômico Dominante/terapia , Guias de Prática Clínica como Assunto/normas , Adulto , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Progressão da Doença , Feminino , Grupos Focais , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Preferência do Paciente , Rim Policístico Autossômico Dominante/diagnóstico , Rim Policístico Autossômico Dominante/psicologia , Poder Psicológico , Qualidade de Vida , Comportamento de Redução do Risco , Resultado do TratamentoRESUMO
BACKGROUND: Patients with early-stage chronic kidney disease (CKD) must make lifestyle modifications and adhere to treatment regimens to prevent their progression to end-stage kidney disease. The aim of this study was to elicit the perspectives of patients with stage 1-4 CKD about their disease, with a specific focus on their information needs in managing and living with CKD and its sequelae. METHODS: Patients with CKD stages 1-4 were purposively sampled from three major hospitals in Sydney, Australia to participate in focus groups. Transcripts were thematically analysed. RESULTS: From nine focus groups including 38 participants, six major themes were identified: medical attentiveness (shared decision-making, rapport, indifference and insensitivity); learning self-management (diet and nutrition, barriers to physical activity, medication safety); contextualizing comorbidities (prominence of CKD, contradictory treatment); prognostic uncertainty (hopelessness, fear of disease progression, disbelief regarding diagnosis); motivation and coping mechanisms (engage in research, pro-active management, optimism, feeling normal); and knowledge gaps (practical advice, access to information, comprehension of pathology results and CKD diagnosis, education for general practitioners). CONCLUSION: Patients capacity to slow the progression of CKD may be limited by their lack of knowledge about the disease, its comorbidities, psychosocial influences and their ability to interact and communicate effectively with their health-care provider. Support from a multidisciplinary care team, combined with provision of comprehensive, accessible and practical educational resources may enhance patients' ability and motivation to access and adhere to therapeutic and lifestyle interventions to retard progression of CKD.
Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Falência Renal Crônica/prevenção & controle , Educação de Pacientes como Assunto , Insuficiência Renal Crônica/terapia , Adaptação Psicológica , Adulto , Idoso , Atitude do Pessoal de Saúde , Comunicação , Efeitos Psicossociais da Doença , Progressão da Doença , Feminino , Grupos Focais , Letramento em Saúde , Humanos , Falência Renal Crônica/diagnóstico , Falência Renal Crônica/etiologia , Masculino , Pessoa de Meia-Idade , Motivação , New South Wales , Cooperação do Paciente , Relações Médico-Paciente , Insuficiência Renal Crônica/complicações , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/psicologia , Fatores de Risco , Comportamento de Redução do Risco , Autocuidado , Índice de Gravidade de Doença , Adulto JovemRESUMO
OBJECTIVES: The involvement of consumers (people with lived experience of disease) in guidelines is widely advocated to improve their relevance and uptake. However, the approaches to consumer involvement in guidelines vary and are not well documented. We describe the consumer involvement framework of Caring for Australians and New ZealandeRs with kidney Impairment Guidelines. STUDY DESIGN AND SETTING: We used a descriptive document analysis to collate all relevant policies, documents, e-mails, and presentations on consumer involvement in our organizations. We performed a narrative synthesis of collated data to summarize our evolving consumer involvement approach in guidelines. RESULTS: We involve consumers at all levels of Caring for Australians and New ZealandeRs with kidney Impairment guideline development and dissemination according to their capacity, from conducting consumer workshops to inform the scope of guidelines, to including consumers as members of the guideline Working Groups and overseeing operations and governance as members of the Steering Committee and staff. Our approach has resulted in tangible outcomes including high-priority topics on patient education, psychosocial care, and clinical care pathways, and focusing the literature reviews to assess patient-important outcomes. The ongoing partnership with consumers led to the generation of consumer version guidelines to improve guideline dissemination and translation to support shared decision-making. CONCLUSION: Meaningful consumer involvement can be achieved through a comprehensive approach across the entire lifecycle of guidelines. However, it must be individualized by ensuring that the involvement of consumers is timely and flexible. Future work is needed to assess the impact of consumer involvement in guideline development.
Assuntos
Participação da Comunidade , Guias de Prática Clínica como Assunto , Insuficiência Renal Crônica , Humanos , Nova Zelândia , Austrália , Insuficiência Renal Crônica/terapia , Participação da Comunidade/métodos , Disseminação de Informação/métodos , População AustralasianaRESUMO
AIM: In response to the increase in Chronic Kidney Disease (CKD) worldwide, several professional organizations have developed clinical practice guidelines to manage and prevent its progression. This study aims to compare the scope, content and consistency of published guidelines on CKD stages I-III. METHODS: Electronic databases of the medical literature, guideline organizations, and the websites of nephrology societies were searched to November 2011. The Appraisal of Guidelines for Research and Evaluation (AGREE) II instrument and textual synthesis was used to appraise and compare recommendations. RESULTS: One consensus statement and 15 guidelines were identified and included. Methodological rigour across guidelines was variable, with average domain scores ranging from 24% to 95%. For detection of CKD, all guidelines recommended estimated glomerular filtration rate measurement, some also recommended serum creatinine and dipstick urinalysis. The recommended protein and albumin creatinine ratios and proteinuria definition thresholds varied (>150-300 mg/day to >500 mg/day). Blood pressure targets ranged (<125/75 to <140/90 mmHg). Angiotensin converting enzyme inhibitor and angiotensin receptor blockers were recommended for hypertension, as combined or as monotherapy. Protein intake recommendations varied (no restriction or 0.75 g/kg per day-1.0 g/kg per day). Salt intake of 6 g/day was recommended by most. Psychosocial support and education were recommended by few but specific strategies were absent. CONCLUSION: CKD guidelines were consistent in scope but were variable with respect to their recommendations, coverage and methodological quality. To promote effective primary and secondary prevention of CKD, regularly updated guidelines that are based on the best available evidence and augmented with healthcare context-specific strategies for implementation are warranted.
Assuntos
Nefrologia/normas , Guias de Prática Clínica como Assunto/normas , Padrões de Prática Médica/normas , Prevenção Primária/normas , Insuficiência Renal Crônica , Prevenção Secundária/normas , Consenso , Diagnóstico Precoce , Medicina Baseada em Evidências/normas , Humanos , Educação de Pacientes como Assunto/normas , Valor Preditivo dos Testes , Prognóstico , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/prevenção & controle , Insuficiência Renal Crônica/terapia , Comportamento de Redução do RiscoRESUMO
BACKGROUND: Consumer involvement in guideline development is advocated, but minimal participation, such as a nominated consumer representative on a guideline working group, can inhibit their decision-making power and contribution. Little is known about how to involve consumers more effectively in guideline development. OBJECTIVE: To describe a targeted approach for involving consumers actively in guideline development, by focusing on topic and outcome selection, and to discuss the impact on content and structure of the final guideline. DESIGN: Descriptive study. SETTING AND PARTICIPANTS: Patients and carers (n = 24) from a tertiary hospital in Sydney attended three structured peer-facilitated workshops to complete group-based exercises on topic and outcome selection for guidelines for early stage chronic kidney disease. These workshops were run in parallel with the guideline-writing group. For each exercise, participants formed small groups and facilitated their own discussion, recorded their responses and presented them to the wider group. The topics and outcomes identified were fed back to the guideline writers. RESULTS: The participants actively engaged in the workshop discussions and articulated topics and outcomes they perceived should be included in clinical guidelines. Four main changes to guideline-related outputs were observed. A new guideline subtopic was introduced, guidelines were consumer-endorsed, guideline recommendations and suggestions for clinical care were augmented with consumer-focused issues, and plain English guidelines were developed. CONCLUSIONS: Consumer workshops in parallel and feeding into guideline development can be a feasible and effective approach for active consumer contribution. This process can inform the development of both consumer-focused guidelines for clinicians and specific versions for consumers.
Assuntos
Cuidadores , Participação da Comunidade/métodos , Pacientes , Guias de Prática Clínica como Assunto , Insuficiência Renal Crônica/terapia , Adulto , Idoso , Austrália , Continuidade da Assistência ao Paciente/organização & administração , Dieta , Exercício Físico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Monitorização Fisiológica/métodos , Educação de Pacientes como Assunto/organização & administração , Participação do Paciente , Índice de Gravidade de Doença , Apoio SocialRESUMO
BACKGROUND: Current clinical practice guidelines recommend a native arteriovenous fistula (AVF) as the vascular access of first choice. Despite this, most patients in western countries start hemodialysis therapy using a catheter. Little is known regarding specific physician and system characteristics that may be responsible for delays in permanent access creation. STUDY DESIGN: Multicenter cohort study using mixed methods; qualitative and quantitative analysis. SETTING & PARTICIPANTS: 9 nephrology centers in Australia and New Zealand, including 319 adult incident hemodialysis patients. PREDICTOR: Identification of barriers and enablers to AVF placement. OUTCOMES: Type of vascular access used at the start of hemodialysis therapy. MEASUREMENTS: Prospective data collection included data concerning predialysis education, interviews of center staff, referral times, and estimated glomerular filtration rate (eGFR) at AVF creation and dialysis therapy start. RESULTS: 319 patients started hemodialysis therapy during the 6-month period, 39% with an AVF and 59% with a catheter. Perceived barriers to access creation included lack of formal policies for patient referral, long wait times for surgical review and access placement, and lack of a patient database for management purposes. eGFR thresholds at referral for and creation of vascular accesses were considerably lower than appreciated (in both cases, median eGFR of 7 mL/min/1.73 m(2)), with median wait times for access creation of only 3.7 weeks. First assessment by a nephrologist less than 12 months before dialysis therapy start was an independent predictor of catheter use (OR, 8.71; P < 0.001). Characteristics of the best performing centers included the presence of a formalized predialysis pathway with a centralized patient database and low nephrologist and surgeon to patient ratios. LIMITATIONS: A limited number of patient-based barriers was assessed. Cross-sectional data only. CONCLUSIONS: A formalized predialysis pathway including patient education and eGFR thresholds for access placement is associated with improved permanent vascular access placement.
Assuntos
Derivação Arteriovenosa Cirúrgica , Competência Clínica/normas , Fidelidade a Diretrizes , Diálise Renal/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Austrália , Cateteres de Demora , Feminino , Seguimentos , Humanos , Falência Renal Crônica/terapia , Masculino , Pessoa de Meia-Idade , Nova Zelândia , Estudos Prospectivos , Fatores de Risco , Fatores de Tempo , Adulto JovemAssuntos
Diagnóstico por Imagem/normas , Aconselhamento Genético/normas , Testes Genéticos/normas , Nefrologia/normas , Rim Policístico Autossômico Dominante/diagnóstico , Rim Policístico Autossômico Dominante/terapia , Adolescente , Adulto , Algoritmos , Terapia Combinada , Procedimentos Clínicos/normas , Marcadores Genéticos , Predisposição Genética para Doença , Humanos , Pessoa de Meia-Idade , Mutação , Fenótipo , Rim Policístico Autossômico Dominante/diagnóstico por imagem , Rim Policístico Autossômico Dominante/genética , Valor Preditivo dos Testes , Canais de Cátion TRPP/genética , Resultado do Tratamento , Adulto JovemRESUMO
OBJECTIVES: To identify and describe chronic disease prevention programs offered by Aboriginal Community Controlled Health Services (ACCHSs) in New South Wales (NSW), Australia. METHODS: ACCHSs were identified through the Aboriginal Health and Medical Research Council of NSW website. Chronic disease programs were identified from the Facebook page and website of each ACCHS. Characteristics, including regions, target population, condition, health behaviour, modality and program frequency were extracted and summarised. RESULTS: We identified 128 chronic disease programs across 32 ACCHSs. Of these, 87 (68%) programs were broad in their scope, 20 (16%) targeted youth, three (2%) targeted Elders, 16 (12%) were for females only and five (4%) were for males only. Interventions included physical activity (77, 60%), diet and nutrition (74, 58%), smoking (70, 55%), and the Aboriginal and Torres Strait Islander Health Check (44, 34%), with 93 programs (73%) of ongoing duration. CONCLUSIONS: Chronic disease prevention programs address chronic conditions by promoting physical activity, diet and nutrition, smoking cessation and health screening. Most target the general Aboriginal community, a few target specific groups based on gender and age, and more than one-quarter are time-limited. Implications for public health: Chronic disease programs that are co-produced with specific groups, based on age and gender, may be needed.
Assuntos
Doença Crônica/prevenção & controle , Comportamentos Relacionados com a Saúde/etnologia , Promoção da Saúde/métodos , Serviços de Saúde do Indígena/estatística & dados numéricos , Estilo de Vida Saudável , Havaiano Nativo ou Outro Ilhéu do Pacífico/psicologia , Abandono do Hábito de Fumar/estatística & dados numéricos , Adolescente , Idoso , Austrália/epidemiologia , Feminino , Humanos , Masculino , New South Wales , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Fumar/epidemiologia , Abandono do Hábito de Fumar/etnologiaRESUMO
BACKGROUND: Aboriginal Australians have a 9-fold increased risk of end-stage renal disease. There is no information about the natural history and risk of chronic kidney disease (CKD) in Aboriginal and non-Aboriginal children. STUDY DESIGN: Using a prospective study design, we aimed to determine the prevalence of persistent markers and risk factors for CKD in Australian Aboriginal and non-Aboriginal children and whether Aboriginal children are at increased risk of persistent markers of CKD after accounting for sociodemographic differences. SETTING & PARTICIPANTS: Children were enrolled from elementary schools throughout New South Wales. PREDICTOR: Aboriginal (Aboriginal and Torres Strait Islander Australians) versus non-Aboriginal ethnicity. OUTCOMES & MEASUREMENTS: Urine analysis, height, weight, blood pressure, birth weight, and sociodemographic status were measured at baseline and 2-year follow-up. Albuminuria was defined as albumin-creatinine ratio of 3.4 mg/mmol or greater, hematuria as 25 or greater red blood cells/microL (>or=1+), obesity as body mass index of 2 SDs or greater, and systolic and diastolic hypertension as blood pressure greater than the 90th percentile. RESULTS: 2,266 children (55.1% Aboriginal; 51.0% boys; mean age, 8.9 +/- 2.0 years [SD] years) were enrolled at baseline. Early markers and predictors of CKD at baseline were frequent: hematuria (5.5%), albuminuria (7.3%), obesity (7.1%), systolic hypertension (7.2%), and diastolic hypertension (5.8%). 1,432 children (63%) were available for retesting at 2-year follow-up (54.0% Aboriginal; 50.5% boys; mean age, 10.5 +/- 2.0 years). Persistent obesity (5.3%) was frequent, but persistent markers of CKD were infrequent (systolic hypertension, 1.1%; diastolic hypertension, 0.2%; hematuria, 1.1%; and albuminuria, 1.5%). Although there were more Aboriginal than non-Aboriginal children with baseline hematuria (7.1% versus 3.6%; P = 0.001), after adjustment for age, sex, birth weight, and sociodemographic status, there was no increased risk of persistent hematuria, albuminuria, obesity, or hypertension in Aboriginal children. LIMITATIONS: Persistent markers of CKD were much less frequent than anticipated, which may have affected study power. The group lost at follow-up was older children, which may have biased results. CONCLUSIONS: Overall, only 20% of children found to have markers of early CKD had persistent abnormalities (diastolic and systolic hypertension, albuminuria, and hematuria) 2 years later, equivalent to a population point prevalence of 1% to 2% in children with a mean age of 10 years. Aboriginal children had greater rates of baseline and transient hematuria, but no increased risk of persistent markers of CKD, suggesting that adolescence and young adulthood is a critical time for preventative strategies.
Assuntos
Nefropatias/etnologia , Havaiano Nativo ou Outro Ilhéu do Pacífico , Adolescente , Albuminúria/complicações , Albuminúria/etnologia , Criança , Feminino , Humanos , Hipertensão/complicações , Hipertensão/etnologia , Nefropatias/diagnóstico , Nefropatias/etiologia , Falência Renal Crônica/epidemiologia , Falência Renal Crônica/etnologia , Falência Renal Crônica/etiologia , Masculino , New South Wales/epidemiologia , Obesidade/complicações , Obesidade/etnologia , Fatores de Risco , Fatores SocioeconômicosRESUMO
AIM: Indigenous people have a two- to tenfold increased risk of premature death from cardiovascular disease. We aimed to determine whether some key risk factors for cardiovascular disease occur more commonly in Aboriginal than non-Aboriginal Australian children. METHODS: Children were enrolled from primary schools throughout New South Wales, the state with the highest number of Aboriginal people. Associations between ethnicity, gender, birthweight, socio-demographic status and hypertension, obesity, baseline and persistent albuminuria were determined. RESULTS: A total of 2266 children (55% Aboriginal) were enrolled. Mean age was 8.9 years (+/-3.8 years). Obesity (body mass index >or=2 standard deviations) was detected in 7.1%, systolic hypertension (blood pressure >90th percentile) in 7.2%, diastolic hypertension in 5.9%, baseline albuminuria (albumin : creatinine >or=3.4 mg/mmol) in 7.3% and persistent albuminuria in 1.5% with no differences between Aboriginal and non-Aboriginal children. Hypertension was less common with increasing social disadvantage (trend P < 0.02). Increasing body mass index standard deviation was strongly associated with systolic and diastolic hypertension (both P < 0.0001). CONCLUSIONS: Many risk factors for cardiovascular disease are already common in young children but not more prevalent in Aboriginal than in non-Aboriginal children. In all children, overweight and obesity have the strongest association with hypertension, but social disadvantage appears protective for hypertension. Our findings suggest that risk for cardiovascular health disparities seen in indigenous adults manifests beyond childhood and that a window of opportunity exists to prevent some of these outcomes.
Assuntos
Doenças Cardiovasculares/etnologia , Havaiano Nativo ou Outro Ilhéu do Pacífico , População Branca , Albuminúria/urina , Peso ao Nascer , Índice de Massa Corporal , Doenças Cardiovasculares/etiologia , Doenças Cardiovasculares/prevenção & controle , Doenças Cardiovasculares/urina , Criança , Pré-Escolar , Feminino , Disparidades nos Níveis de Saúde , Humanos , Hipertensão/complicações , Hipertensão/etnologia , Hipertensão/etiologia , Masculino , New South Wales/epidemiologia , Obesidade/complicações , Obesidade/etnologia , Vigilância da População , Prevalência , Fatores de Risco , Classe SocialRESUMO
BACKGROUND: Chronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy. OBJECTIVE: To identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices. SETTING: An Australian paediatric hospital and health consumer organisations. METHODS: Recruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed. RESULTS: Seventy-eight research questions were identified. Five themes underpinned participants' priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary services). CONCLUSION: Research priorities identified by children, caregivers and health professionals emphasise a focus on life participation, psychosocial well-being, impact on family and quality of care. These priorities may be used by funding and policy organisations in establishing a paediatric research agenda.
Assuntos
Doença Crônica/terapia , Prioridades em Saúde , Adolescente , Atitude Frente a Saúde , Criança , Pré-Escolar , Consenso , Comportamento do Consumidor , Hospitais Pediátricos , Humanos , Lactente , Recém-Nascido , New South Wales , Participação do PacienteAssuntos
Derivação Arteriovenosa Cirúrgica , Implante de Prótese Vascular , Cateterismo Venoso Central , Guias de Prática Clínica como Assunto , Derivação Arteriovenosa Cirúrgica/efeitos adversos , Derivação Arteriovenosa Cirúrgica/enfermagem , Implante de Prótese Vascular/efeitos adversos , Implante de Prótese Vascular/enfermagem , Infecções Relacionadas a Cateter/prevenção & controle , Cateterismo Venoso Central/efeitos adversos , Cateterismo Venoso Central/enfermagem , Cateteres Venosos Centrais , Humanos , Síndrome do Roubo Subclávio/terapiaRESUMO
OBJECTIVE: To evaluate research priority setting approaches in childhood chronic diseases and to describe the priorities of stakeholders including patients, caregivers/families and health professionals. DESIGN: We conducted a systematic review of MEDLINE, Embase, PsycINFO and CINAHL from inception to 16 October 2016. Studies that elicited stakeholder priorities for paediatric chronic disease research were eligible for inclusion. Data on the prioritisation process were extracted using an appraisal checklist. Generated priorities were collated into common topic areas. RESULTS: We identified 83 studies (n=15 722). Twenty (24%) studies involved parents/caregivers and four (5%) children. The top three health areas were cancer (11%), neurology (8%) and endocrine/metabolism (8%). Priority topic areas were treatment (78%), disease trajectory (48%), quality of life/psychosocial impact (48%), disease onset/prevention (43%), knowledge/self-management (33%), prevalence (30%), diagnostic methods (28%), access to healthcare (25%) and transition to adulthood (12%). The methods included workshops, Delphi techniques, surveys and focus groups/interviews. Specific methods for collecting and prioritising research topics were described in only 60% of studies. Most reviewed studies were conducted in high-income nations. CONCLUSIONS: Research priority setting activities in paediatric chronic disease cover many discipline areas and have elicited a broad range of topics. However, child/caregiver involvement is uncommon, and the methods often lack clarity. A systematic and explicit process that involves patients and families in partnership may help to inform a more patient and family-relevant research agenda in paediatric chronic disease.
Assuntos
Doença Crônica/psicologia , Qualidade de Vida , Cuidadores , Criança , Pessoal de Saúde , Humanos , Avaliação de Resultados em Cuidados de Saúde , Participação dos InteressadosRESUMO
Autosomal dominant polycystic kidney disease (ADPKD) is the commonest inherited cause of renal failure in adults, and is due to loss-of-function mutations in either the PKD1 or PKD2 genes, which encode polycystin-1 and polycystin-2, respectively. These proteins have an essential role in maintaining the geometric structure of the distal collecting duct in the kidney in adult life, and their dysfunction predisposes to renal cyst formation. The typical renal phenotype of ADPKD is the insidious development of hundreds of renal cysts, which form in childhood and grow progressively through life, causing end-stage kidney failure in the fifth decade in about half affected by the mutation. Over the past 2 decades, major advances in genetics and disease pathogenesis have led to well-conducted randomized controlled trials, and observational studies that have resulted in an accumulation of evidence-based data, and raise hope that the lifetime risk of kidney failure due to ADPKD will be progressively curtailed during this century. This review will provide a contemporary summary of the current state of the field in disease pathogenesis and therapeutics, and also briefly highlights the importance of clinical practice guidelines, patient perspectives, patient-reported outcomes, uniform trial reporting, and health-economics in ADPKD.