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Indoor air pollution is a growing public health concern globally and is associated with increased respiratory symptoms and morbidity. Individuals spend most of their time indoors, and pollutant-related health effects are often driven by the indoor environment. Understanding effective interventions to improve indoor air quality and their impact on respiratory outcomes is key to decreasing the burden of air pollution for high-risk populations across the life-span. This review applies a hierarchy of interventions framework specific to respiratory health effects and focuses on recent studies of interventions to improve indoor air quality among high-risk populations with chronic respiratory disease published in the past 3 years. While policy and source control interventions are likely the most effective and equitable approaches to improve indoor air quality and benefit population health, these were less extensively investigated. Engineering interventions, such as air cleaner interventions, were the most widely studied. Several studies, including those focused on asthma and chronic obstructive pulmonary disease, demonstrated improvement in symptoms and medication receipt with interventions in both home- and school-based settings. Combined multilevel interventions with engineering and behavioral interventions led to improved respiratory outcomes in some, but not all, studies. Placing the recent work in the context of the broader literature, we identify gaps in research. Further research is needed to understand intervention effectiveness over time and an increased focus on policy and source control interventions that can mitigate risk in vulnerable populations.
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Contaminación del Aire Interior , Humanos , Contaminación del Aire Interior/efectos adversos , Contaminación del Aire Interior/prevención & control , Enfermedades Respiratorias/prevención & control , Enfermedades Respiratorias/etiologíaRESUMEN
Prospective cohort studies of kidney equity are limited by a focus on advanced rather than early disease and selective recruitment. Whole population studies frequently rely on area-level measures of deprivation as opposed to individual measures of social disadvantage. Here, we linked kidney health and individual census records in the North of Scotland (Grampian area), 2011-2021 (GLOMMS-CORE) and identified incident kidney presentations at thresholds of estimated glomerular filtration rate (eGFR) under 60 (mild/early), under 45 (moderate), under 30 ml/min/1.73m2 (advanced), and acute kidney disease (AKD). Household and neighborhood socioeconomic measures, living circumstances, and long-term mortality were compared. Case-mix adjusted multivariable logistic regression (living circumstances), and Cox models (mortality) incorporating an interaction between the household and the neighborhood were used. Among census respondents, there were 48546, 29081, 16116, 28097 incident presentations of each respective eGFR cohort and AKD. Classifications of socioeconomic position by household and neighborhood were related but complex, and frequently did not match. Compared to households of professionals, people with early kidney disease in unskilled or unemployed households had increased mortality (adjusted hazard ratios: 95% confidence intervals) of (1.26: 1.19-1.32) and (1.77: 1.60-1.96), respectively with adjustment for neighborhood indices making little difference. Those within either a deprived household or deprived neighborhood experienced greater mortality, but those within both had the poorest outcomes. Unskilled and unemployed households frequently reported being limited by illness, adverse mental health, living alone, basic accommodation, lack of car ownership, language difficulties, and visual and hearing impairments. Thus, impacts of deprivation on kidney health are spread throughout society-complex, serious, and not confined to those living in deprived neighborhoods.
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Tasa de Filtración Glomerular , Humanos , Masculino , Escocia/epidemiología , Femenino , Persona de Mediana Edad , Estudios Prospectivos , Anciano , Adulto , Características del Vecindario/estadística & datos numéricos , Factores Socioeconómicos , Factores de Riesgo , Características de la Residencia/estadística & datos numéricos , Determinantes Sociales de la Salud , Disparidades en el Estado de Salud , Desempleo/estadística & datos numéricos , Enfermedades Renales/epidemiología , Enfermedades Renales/mortalidad , Enfermedades Renales/diagnóstico , Enfermedades Renales/fisiopatologíaRESUMEN
RATIONALE & OBJECTIVE: Indigenous People suffer a high burden of kidney disease. Those receiving maintenance dialysis have worse outcomes compared with similarly treated non-Indigenous patients. We characterized the experiences of Indigenous patients receiving dialysis in British-colonized countries to gain insights into which aspects of kidney care may benefit from improvement. STUDY DESIGN: A systematic review of published qualitative interview studies. SETTING & STUDY POPULATIONS: Indigenous Peoples aged 18 years and over, receiving hemodialysis or peritoneal dialysis in British-colonized countries. SELECTION CRITERIA FOR STUDIES: Search terms for Indigenous Peoples, dialysis, and qualitative research were entered into Medline, Embase, PsycINFO, and CINAHL and searched from inception to January 5, 2023. DATA EXTRACTION: Characteristics of each study were extracted into Microsoft Excel for quality assessment. ANALYTICAL APPROACH: Data were analyzed using thematic synthesis. RESULTS: The analysis included 28 studies involving 471 participants from Australia, New Zealand, Canada, and the United States. We identified four themes: centrality of family and culture (continuing dialysis for family, gaining autonomy through shared involvement, balancing primary responsibility to care for family); marginalization due to structural and social inequities (falling through gaps in primary care intensifying shock, discriminated against and judged by specialists, alienated and fearful of hospitals, overwhelmed by travel, financial and regimental burdens); vulnerability in accessing health care (need for culturally responsive care, lack of language interpreters, without agency in decision-making, comorbidities compounding complexity of self-management); and distress from separation from community (disenfranchisement and sorrow when away for dialysis, inability to perpetuate cultural continuity, seeking a kidney transplant). LIMITATIONS: We only included articles published in English. CONCLUSIONS: Indigenous patients receiving dialysis experience inequities in health care that compound existing accessibility issues caused by colonization. Improving the accessibility and cultural responsiveness of dialysis and kidney transplant services in collaboration with Indigenous stakeholders holds promise to enhance the experience of Indigenous patients receiving dialysis. PLAIN-LANGUAGE SUMMARY: Worldwide Indigenous populations suffer a high incidence of chronic disease leading to lower life expectancy, particularly for kidney disease, an insidious condition requiring long-term dialysis treatment. By listening to Indigenous dialysis patients' stories, we hoped to understand how to improve their experience. We gathered 28 qualitative research studies from four countries reporting Indigenous adults' experiences of dialysis. They described lacking awareness of kidney disease, poor access to health services, systemic racism, inadequate cultural safety, and being dislocated from family, community, and culture. These findings indicate that respectful collaboration with Indigenous Peoples to craft and implement policy changes holds promise to improve prevention, integrate culturally responsive health care practices, and provide better access to local dialysis services and opportunities for kidney transplants.
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Pueblos Indígenas , Enfermedades Renales , Diálisis Renal , Adolescente , Adulto , Humanos , Enfermedad Crónica , Accesibilidad a los Servicios de Salud , Enfermedades Renales/terapia , Investigación CualitativaRESUMEN
Patient and caregiver involvement can enhance the uptake and impact of research, but the involvement of patients and caregivers who are underserved and marginalized is often limited. A better understanding of how to make involvement in research more broadly accessible, supportive, and inclusive for patients with chronic kidney disease (CKD) and caregivers is needed. We conducted a national workshop involving patients, caregivers, clinicians, and researchers from across Australia to identify strategies to increase the diversity of patients and caregivers involved in CKD research. Six themes were identified. Building trust and a sense of safety was considered pivotal to establishing meaningful relationships to support knowledge exchange. Establishing community and connectedness was expected to generate a sense of belonging to motivate involvement. Balancing stakeholder goals, expectations, and responsibilities involved demonstrating commitment and transparency by researchers. Providing adequate resources and support included strategies to minimize the burden of involvement for patients and caregivers. Making research accessible and relatable was about nurturing patient and caregiver interest by appealing to intrinsic motivators. Adapting to patient and caregiver needs and preferences required tailoring the approach for individuals and the target community. Strategies and actions to support these themes may support more diverse and equitable involvement of patients and caregivers in research in CKD.
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Cuidadores , Participación del Paciente , Insuficiencia Renal Crónica , Humanos , Cuidadores/psicología , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/psicología , Australia , Investigación Biomédica Traslacional , Investigación BiomédicaRESUMEN
BACKGROUND: Chronic kidney disease (CKD) is an important but insufficiently recognized public health problem. Unprecedented advances in delaying progression of CKD and reducing kidney failure and death have been made in recent years, with the addition of the sodium-glucose cotransporter 2 inhibitors and other newer medication to the established standard of care with inhibitors of the renin-angiotensin system. Despite knowledge of these effective therapies, their prescription and use remain suboptimal globally, and more specially in low resource settings. Many challenges contribute to this gap between knowledge and translation into clinical care, which is even wider in lower resource settings across the globe. Implementation of guideline-directed care is hampered by lack of disease awareness, late or missed diagnosis, clinical inertia, poor quality care, cost of therapy, systemic biases, and lack of patient empowerment. All of these are exacerbated by the social determinants of health and global inequities. SUMMARY: CKD is a highly manageable condition but requires equitable and sustainable access to quality care supported by health policies, health financing, patient and health care worker education, and affordability of medications and diagnostics. KEY MESSAGES: The gap between the knowledge and tools to treat CKD and the implementation of optimal quality kidney care should no longer be tolerated. Advocacy, research and action are required to improve equitable access to sustainable quality care for CKD everywhere.
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Salud Global , Calidad de la Atención de Salud , Insuficiencia Renal Crónica , Humanos , Insuficiencia Renal Crónica/terapia , Calidad de la Atención de Salud/normas , Disparidades en Atención de Salud , Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/normas , Equidad en SaludRESUMEN
Discoid lupus erythematosus (DLE) is a devastating autoimmune disease with few therapies available. For patients with little to no symptom improvement with initial treatment, the literature surrounding further treatment options and their efficacy remains limited. Here we report a 46-year-old patient with lupus and refractory DLE, who failed numerous medications since her initial diagnosis in 2014. She had a robust response to lenalidomide with further improvement after adding anifrolumab (ANI), in conjunction with the standard of care hydroxychloroquine. Furthermore, she was able to taper off steroids without interval flares. The patient has not experienced any major infections since the initiation of treatment. No previous case reports describing outcomes of lenalidomide and ANI have been reported, yet the combinational approach has potential. Future clinical trials are needed to investigate the safety of the combination of lenalidomide and ANI in lupus patients with refractory DLE.
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Anticuerpos Monoclonales Humanizados , Hidroxicloroquina , Lenalidomida , Lupus Eritematoso Discoide , Humanos , Lenalidomida/uso terapéutico , Lenalidomida/administración & dosificación , Femenino , Persona de Mediana Edad , Lupus Eritematoso Discoide/tratamiento farmacológico , Anticuerpos Monoclonales Humanizados/uso terapéutico , Hidroxicloroquina/uso terapéutico , Quimioterapia Combinada , Resultado del TratamientoRESUMEN
BACKGROUND: Many outcomes of high priority to patients and clinicians are infrequently and inconsistently reported across trials in chronic kidney disease (CKD), which generates research waste and limits evidence-informed decision making. We aimed to generate consensus among patients/caregivers and health professionals on critically important outcomes for trials in CKD prior to kidney failure and the need for kidney replacement therapy, and to describe the reasons for their choices. METHODS: This was an online two-round international Delphi survey. Adult patients with CKD (all stages and diagnoses), caregivers and health professionals who could read English, Spanish or French were eligible. Participants rated the importance of outcomes using a Likert scale (7-9 indicating critical importance) and a Best-Worst Scale. The scores for the two groups were assessed to determine absolute and relative importance. Comments were analysed thematically. RESULTS: In total, 1399 participants from 73 countries completed Round 1 of the Delphi survey, including 628 (45%) patients/caregivers and 771 (55%) health professionals. In Round 2, 790 participants (56% response rate) from 63 countries completed the survey including 383 (48%) patients/caregivers and 407 (52%) health professionals. The overall top five outcomes were: kidney function, need for dialysis/transplant, life participation, cardiovascular disease and death. In the final round, patients/caregivers indicated higher scores for most outcomes (17/22 outcomes), and health professionals gave higher priority to mortality, hospitalization and cardiovascular disease (mean difference >0.3). Consensus was based upon the two groups yielding median scores of ≥7 and mean scores >7, and the proportions of both groups rating the outcome as 'critically important' being >50%. Four themes reflected the reasons for their priorities: imminent threat of a health catastrophe, signifying diminishing capacities, ability to self-manage and cope, and tangible and direct consequences. CONCLUSION: Across trials in CKD, the outcomes of highest priority to patients, caregivers and health professionals were kidney function, need for dialysis/transplant, life participation, cardiovascular disease and death.
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Cuidadores , Técnica Delphi , Personal de Salud , Insuficiencia Renal Crónica , Humanos , Cuidadores/psicología , Masculino , Femenino , Insuficiencia Renal Crónica/terapia , Persona de Mediana Edad , Adulto , Personal de Salud/psicología , Anciano , Ensayos Clínicos como Asunto , Encuestas y Cuestionarios , Evaluación de Resultado en la Atención de Salud/métodosRESUMEN
BACKGROUND: Treatment strategies for BK polyomavirus (BKPyV) infection in kidney transplant recipients are heterogeneous among clinicians. We aimed to identify the treatment preferences of key stakeholders for BKPyV infection and measure the trade-offs between treatment outcomes. METHODS: Adult kidney transplant recipients, caregivers, and clinicians were eligible to participate in a discrete choice experiment between February 2021 and June 2022. The five treatment-related attributes were achieving viral clearance and optimal graft function, as well as reducing the risk of graft loss, acute rejection, and complications. Results were analyzed using multinomial logistic models. RESULTS: In total, 109 participants (57 kidney transplant recipients, 10 caregivers, and 42 health professionals) were included. The most important attribute was the risk of graft loss, followed by side effects and acute rejection. As the risk of graft loss increased, all participants were less inclined to accept an assigned treatment strategy. For instance, if graft loss risk was increased from 1% to 50%, the probability of uptake of a treatment strategy for BKPyV infection was reduced from 87% to 3%. CONCLUSION: Graft loss is the predominant concern for patients, caregivers, and health professionals when deciding on the treatment for BKPyV infection, and should be included in intervention trials of BKPyV infection.
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BACKGROUND: Caregivers of children with chronic kidney disease (CKD) in low resource settings must provide complex medical care at home while being burdened by treatment costs often paid out-of-pocket. We hypothesize that caregiver burden in our low resource setting is greater than reported from high income countries and is associated with frequent catastrophic healthcare expenditure (CHE). METHODS: We conducted a mixed-methods study of primary caregivers of children with advanced CKD (stage 3b-5) in our private-sector referral hospital in a low resource setting. We assessed caregiver burden using the Pediatric Renal Caregiver Burden Scale (PRCBS) and measured financial burden by calculating the proportion of caregivers who experienced CHE (monthly out-of-pocket healthcare expenditure exceeding 10% of total household monthly expenditure). We performed a qualitative reflexive thematic analysis of caregiver interviews to explore sources of burden. RESULTS: Of the 45 caregivers included, 35 (78%) had children on maintenance dialysis (25 PD, 10 HD). Mean caregiver burden score was 141 (± 17), greater than previously reported. On comparative analysis, PRCBS scores were higher among caregivers of children with kidney failure (p = 0.005), recent hospitalization (p = 0.03), non-earning caregivers (p = 0.02), caring for > 2 dependents (p = 0.009), and with high medical expenditure (p = 0.006). CHE occurred in 43 (96%) caregivers of whom 37 (82%) paid out-of-pocket. The main themes derived relating to caregiver burden were severe financial burden, mental stress and isolation, and perpetual burden of concern. CONCLUSION: Parents of children with CKD experienced severe caregiver burden with frequent CHE and relentless financial stress indicating an imminent need for social support interventions.
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Carga del Cuidador , Gastos en Salud , Insuficiencia Renal Crónica , Humanos , Masculino , Femenino , Gastos en Salud/estadística & datos numéricos , Niño , Insuficiencia Renal Crónica/economía , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/psicología , Carga del Cuidador/psicología , Carga del Cuidador/economía , Adolescente , Preescolar , Costo de Enfermedad , Adulto , Cuidadores/psicología , Cuidadores/economía , Cuidadores/estadística & datos numéricos , Persona de Mediana Edad , Configuración de Recursos LimitadosRESUMEN
BACKGROUND: Healthcare providers (HCP) continue to provide patient care during the COVID-19 pandemic despite the known risks for transmission. Studies conducted early in the pandemic showed that factors associated with higher levels of distress among HCP included being of younger age, female, in close contact with people with COVID-19, and lower levels of education. The goal of this study was to determine if level of patient contact was associated with concern for post-traumatic stress disorder (PTSD) as measured by the Impact of Event Scale-Revised (IES-R). METHODS: This cross-sectional study, embedded within a prospective cohort study, recruited HCP working in hospitals in four Canadian provinces from June 2020 to June 2023. Data were collected at enrolment and annually from baseline surveys with the IES-R scale completed at withdrawal/study completion. Modified Poisson regression was used to determine the association between level of patient contact and concern for PTSD (i.e., IES-R scores ≥24). RESULTS: The adjusted rate ratio (RR) associated with concern for PTSD among HCP with physical contact/direct patient care was 1.19 (95% confidence interval (CI) 1.03, 1.38) times higher than for HCP with no direct contact. In fully adjusted linear regression models, physical care/contact was associated with higher avoidance and hyperarousal scores, but not intrusion scores. CONCLUSIONS: Administrators and planners need to consider the impact of heightened and ongoing stress among HCP by providing early screening for adverse emotional outcomes and delivery of tailored preventive strategies to ensure immediate and long-term HCP health.
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COVID-19 , Personal de Salud , Trastornos por Estrés Postraumático , Humanos , COVID-19/epidemiología , COVID-19/psicología , COVID-19/prevención & control , Femenino , Canadá/epidemiología , Masculino , Estudios Transversales , Trastornos por Estrés Postraumático/epidemiología , Adulto , Estudios Prospectivos , Personal de Salud/psicología , Personal de Salud/estadística & datos numéricos , Persona de Mediana Edad , Pandemias , SARS-CoV-2 , Encuestas y CuestionariosRESUMEN
INTRODUCTION: Lockdown measure has been utilized widely to mitigate COVID-19 pandemic transmission and recently during the 2022 Sudan Ebola Virus Disease outbreak in Uganda. These have setback effects on the continuity of essential health services such as tuberculosis (TB) care, reversing progress made in the fight against tuberculosis (TB) over the past decade. We set out to understand patient-reported barriers to accessing TB care services during the COVID-19 pandemic in Uganda. METHODS: Mixed methods study involving review of medical records of TB patients who received TB care from January to September 2020. We used quantitative and qualitative methods including phone questionnaires and in-depth interviews. We carried out descriptive statistics, a chi-square test and conducted a thematic analysis. RESULTS: We carried out phone interviews with 672 participants. The majority (60%) were male and with an average of 35 years (SD:11). A significantly higher proportion of patients reported a barrier to TB care access during the COVID-19 lockdown than pre-lockdown (79.9% vs. 68.1% p = 0.027). We carried out in-depth interviews with 28 participants (54% (15/28): male). Barriers experienced by these participants included lack of a means of transport to reach the health facility, lack of money to pay the transport fares, long distances to the facility, fear of COVID-19 infection, stigma due to overlap between TB and COVID-19 symptoms, and few health care workers available during the lockdown period. CONCLUSION: Lockdown measures instituted to mitigate the transmission of COVID1-19 affected access to TB care services in Uganda. Uganda is at risk of future emerging and re-emerging diseases of epidemic potential. Therefore, there should be measures to ensure the continuity of essential services such as tuberculosis care during the implementation of future epidemic response interventions such as a lockdown.
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COVID-19 , Tuberculosis , Humanos , Femenino , Masculino , COVID-19/epidemiología , Uganda/epidemiología , Control de Enfermedades Transmisibles , Pandemias , Tuberculosis/epidemiología , Tuberculosis/terapiaRESUMEN
OBJECTIVE: Dietitians have a central role in eating disorder (ED) treatment, however few studies exist investigating therapeutic aspects of dietetic care and factors influencing the dietitian-patient relationship. To address the gap, this study aimed to use a qualitative description approach to explore the experiences of delivering and receiving dietetic care in ED treatment in the UK. METHOD: Semi-structured interviews were conducted with 6 specialist ED dietitians and focus groups with 11 recovered ED patients. Interviews were transcribed and inductive thematic analysis was performed to identify key themes describing the data. RESULTS: Six key themes were generated: (1) Building trust, (2) Appropriate timing, (3) Adapting, (4) Dietitians as experts, (5) Boundaries, and (6) Difficult relationships. Participants highlighted the importance of building trust and considering nutritional risk and readiness in treatment approach. Patients expressed a desire for dietitians to have experience in EDs, facilitating understanding of their illness. However, dietitians identified the nature of EDs making their role challenging at times. DISCUSSION: This study described various factors affecting dietetic care in EDs and provided a valuable insight into patients' perceptions of treatment. The findings support advancements in ED dietitians' knowledge and understanding, helping to enhance quality of care.
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Trastornos de Alimentación y de la Ingestión de Alimentos , Nutricionistas , Relaciones Profesional-Paciente , Investigación Cualitativa , Humanos , Trastornos de Alimentación y de la Ingestión de Alimentos/terapia , Trastornos de Alimentación y de la Ingestión de Alimentos/psicología , Nutricionistas/psicología , Femenino , Reino Unido , Adulto , Masculino , Grupos Focales , DietéticaRESUMEN
Cardiovascular disease is the leading cause of death in patients receiving hemodialysis. Currently, there is no standardized definition of myocardial infarction (MI) for patients receiving hemodialysis. Through an international consensus process MI was established as the core CVD measure for this population in clinical trials. The Standardised Outcomes in Nephrology Group-Hemodialysis (SONG-HD) initiative convened a multidisciplinary, international working group to address the definition of MI in this population. On the basis of current evidence, the working group recommends using the Fourth Universal Definition of Myocardial Infarction with specific caveats with regard to the interpretation of "ischemic symptoms" and performing a baseline 12-lead electrocardiogram to facilitate interpretation of acute changes on subsequent tracings. The working group does not recommend obtaining baseline cardiac troponin values, though does recommend obtaining serial cardiac biomarkers in settings where ischemia is suspected. The application of an evidence-based uniform definition should increase the reliability and accuracy of trial results.
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Infarto del Miocardio , Nefrología , Humanos , Consenso , Reproducibilidad de los Resultados , Infarto del Miocardio/diagnóstico , Infarto del Miocardio/terapia , Diálisis Renal/efectos adversos , Diálisis Renal/métodos , BiomarcadoresRESUMEN
RATIONALE & OBJECTIVE: COVID-19 disproportionately affects people with comorbidities, including chronic kidney disease (CKD). We describe the impact of COVID-19 on people with CKD and their caregivers. STUDY DESIGN: A systematic review of qualitative studies. SETTING & STUDY POPULATIONS: Primary studies that reported the experiences and perspectives of adults with CKD and/or caregivers were eligible. SEARCH STRATEGY & SOURCES: MEDLINE, Embase, PsycINFO, CINAHL searched from database inception to October 2022. DATA EXTRACTION: Two authors independently screened the search results. Full texts of potentially relevant studies were assessed for eligibility. Any discrepancies were resolved by discussion with another author. ANALYTICAL APPROACH: A thematic synthesis was used to analyze the data. RESULTS: Thirty-four studies involving 1,962 participants were included. Four themes were identified: exacerbating vulnerability and distress (looming threat of COVID-19 infection, intensifying isolation, aggravating pressure on families); uncertainty in accessing health care (overwhelmed by disruption of care, confused by lack of reliable information, challenged by adapting to telehealth, skeptical about vaccine efficacy and safety); coping with self-management (waning fitness due to decreasing physical activity, diminishing ability to manage diet, difficulty managing fluid restrictions, minimized burden with telehealth, motivating confidence and autonomy); and strengthening sense of safety and support (protection from lockdown restrictions, increasing trust in care, strengthened family connection). LIMITATIONS: Non-English studies were excluded, and inability to delineate themes based on stage of kidney and treatment modality. CONCLUSIONS: Uncertainty in accessing health care during the COVID-19 pandemic exacerbated vulnerability, emotional distress, and burden, and led to reduced capacity to self-manage among patients with CKD and their caregivers. Optimizing telehealth and access to educational and psychosocial support may improve self-management and the quality and effectiveness of care during a pandemic, mitigating potentially catastrophic consequences for people with CKD. PLAIN-LANGUAGE SUMMARY: During the COVID-19 pandemic, patients with chronic kidney disease (CKD) faced barriers and challenges to accessing care and were at an increased risk of worsened health outcomes. To understand the perspectives about the impact of COVID-19 among patients with CKD and their caregivers, we conducted a systematic review of 34 studies involving 1,962 participants. Our findings demonstrated that uncertainty in accessing care during the COVID-19 pandemic exacerbated the vulnerability, distress, and burden of patients and impaired their abilities for self-management. Optimizing the use of telehealth and providing education and psychosocial services may mitigate the potential consequences for people with CKD during a pandemic.
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COVID-19 , Insuficiencia Renal Crónica , Adulto , Humanos , Pandemias , Control de Enfermedades Transmisibles , Investigación Cualitativa , Insuficiencia Renal Crónica/epidemiología , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/psicologíaRESUMEN
AIM: Chronic kidney disease (CKD) and its treatment places a financial burden on healthcare systems and households worldwide, yet little is known of its financial impact, on those who reside in rural settings. We aimed to quantify the financial impacts and out-of-pocket expenditure experienced by adult rural patients with CKD in Australia. METHODS: A web based structured survey was completed between November 2020 and January 2021. English speaking participants over 18 years of age, diagnosed with CKD stages 3-5, those receiving dialysis or with a kidney transplant, who lived in a rural location in Australia. RESULTS: In total 77 (69% completion rate) participated. The mean out of pocket expenses were 5056 AUD annually (excluding private health insurance costs), 78% of households experienced financial hardship with 54% classified as experiencing financial catastrophe (out-of-pocket expenditure greater than 10% of household income). Mean distances to access health services for all rural and remote classifications was greater than 50 kilometres for specialist nephrology services and greater than 300 kilometres for transplanting centres. Relocation for a period greater than 3 months to access care was experienced by 24% of participants. CONCLUSION: Rural households experience considerable financial hardship due to out-of-pocket costs in accessing treatment for CKD and other health-related care, raising concerns about equity in Australia, a high-income country with universal healthcare.
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Estrés Financiero , Insuficiencia Renal Crónica , Adulto , Humanos , Adolescente , Australia/epidemiología , Diálisis Renal , Insuficiencia Renal Crónica/diagnóstico , Insuficiencia Renal Crónica/terapia , Atención a la Salud , Gastos en SaludRESUMEN
RATIONALE & OBJECTIVE: Caregivers of patients with chronic kidney disease from rural communities play a crucial role in access to dialysis and transplantation, but they face many challenges including geographical distance, financial hardship, and limited support. This study aimed to inform strategies to overcome these challenges by describing the experiences of caregivers of patients with kidney failure from rural Australian communities in accessing kidney replacement therapy. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: 18 adult caregivers of Australian rural patients with kidney failure treated with dialysis or kidney transplantation. ANALYTICAL APPROACH: Semistructured interviews were conducted. Interview transcripts were thematically analyzed. RESULTS: The 18 participants were aged 20 to 78 years; 13 (72%) were female, and 13 (72%) were the spouse/partner of the patient. We identified 5 themes: devastating social isolation (difficult periods of separation, exclusion from peers, forced relocation); financial dependency and sacrifice (burgeoning out-of-pocket costs, disruption to work life, foregoing autonomy); ongoing psychological trauma (concern for neglect and stress on children, long-term emotional distress); overwhelmed by multifaceted roles and expectations (patient advocacy, uncertainty in navigating multiple health systems); and persistent burden of responsibility (loss of self-identity, ongoing travel requirements, scarcity of psychosocial support, unpreparedness for treatment regime). LIMITATIONS: The study was conducted in a high-income, English-speaking country with universal health insurance, which may limit the transferability of the findings. CONCLUSIONS: Australian rural caregivers of people with kidney failure treated by maintenance dialysis or transplantation experience an exhausting physical, financial, and psychological burden. Strategies to address these profound challenges are needed. PLAIN-LANGUAGE SUMMARY: This interview-based study elicited the challenges faced by people and family members who care for patients from rural towns who are receiving dialysis or kidney transplantation. The barriers and difficulties reported included traveling long distances, needing to move to larger towns and leaving their homes, feeling concerned for the long-term effects on their children, physical exhaustion, and financial issues. Additional efforts are needed to identify the means by which caregivers and their families in rural towns can obtain support to care for those with kidney failure.
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Trasplante de Riñón , Insuficiencia Renal Crónica , Adulto , Niño , Humanos , Femenino , Masculino , Cuidadores/psicología , Diálisis Renal/psicología , Población Rural , Australia , Investigación Cualitativa , Insuficiencia Renal Crónica/terapiaRESUMEN
BACKGROUND: Solid organ transplantation has seen improvements in both surgical techniques and immunosuppression, achieving prolonged survival. Essential to graft acceptance and post-transplant recovery, immunosuppressive medications are often accompanied by a high prevalence of gastrointestinal (GI) symptoms and side effects. Apart from GI side effects, long-term exposure to immunosuppressive medications has seen an increase in drug-related morbidities such as diabetes mellitus, hyperlipidaemia, hypertension, and malignancy. Non-adherence to immunosuppression can lead to an increased risk of graft failure. Recent research has indicated that any microbial imbalances (otherwise known as gut dysbiosis or leaky gut) may be associated with cardiometabolic diseases in the long term. Current evidence suggests a link between the gut microbiome and the production of putative uraemic toxins, increased gut permeability, and transmural movement of bacteria and endotoxins and inflammation. Early observational and intervention studies have been investigating food-intake patterns, various synbiotic interventions (antibiotics, prebiotics, or probiotics), and faecal transplants to measure their effects on microbiota in treating cardiometabolic diseases. It is believed high doses of synbiotics, prebiotics and probiotics are able to modify and improve dysbiosis of gut micro-organisms by altering the population of the micro-organisms. With the right balance in the gut flora, a primary benefit is believed to be the suppression of pathogens through immunostimulation and gut barrier enhancement (less permeability of the gut). OBJECTIVES: To assess the benefits and harms of synbiotics, prebiotics, and probiotics for recipients of solid organ transplantation. SEARCH METHODS: We searched the Cochrane Kidney and Transplant Specialised Register up to 9 March 2022 through contact with the Information Specialist 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 Register (ICTRP) Search Portal and ClinicalTrials.gov. SELECTION CRITERIA: We included randomised controlled trials measuring and reporting the effects of synbiotics, prebiotics, or probiotics, in any combination and any formulation given to solid organ transplant recipients (any age and setting). Two authors independently assessed the retrieved titles and abstracts and, where necessary, the full text to determine which satisfied the inclusion criteria. DATA COLLECTION AND ANALYSIS: Data extraction was independently carried out by two authors using a standard data extraction form. The methodological quality of included studies was assessed using the Cochrane risk of bias tool. Data entry was carried out by one author and cross-checked by another. Confidence in the evidence was assessed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. MAIN RESULTS: Five studies (250 participants) were included in this review. Study participants were adults with a kidney (one study) or liver (four studies) transplant. One study compared a synbiotic to placebo, two studies compared a probiotic to placebo, and two studies compared a synbiotic to a prebiotic. Overall, the quality of the evidence is poor. Most studies were judged to have unclear (or high) risk of bias across most domains. Of the available evidence, meta-analyses undertaken were of limited data from small studies. Across all comparisons, GRADE evaluations for all outcomes were judged to be very low certainty evidence. Very low certainty evidence implies that we are very uncertain about results (not estimable due to lack of data or poor quality). Synbiotics had uncertain effects on the change in microbiota composition (total plasma p-cresol), faecal characteristics, adverse events, kidney function or albumin concentration (1 study, 34 participants) compared to placebo. Probiotics had uncertain effects on GI side effects, infection rates immediately post-transplant, liver function, blood pressure, change in fatty liver, and lipids (1 study, 30 participants) compared to placebo. Synbiotics had uncertain effects on graft health (acute liver rejection) (2 studies, 129 participants: RR 0.73, 95% CI 0.43 to 1.25; 2 studies, 129 participants; I² = 0%), the use of immunosuppression, infection (2 studies, 129 participants: RR 0.18, 95% CI 0.03 to 1.17; I² = 66%), GI function (time to first bowel movement), adverse events (2 studies, 129 participants: RR 0.79, 95% CI 0.40 to 1.59; I² = 20%), serious adverse events (2 studies, 129 participants: RR 1.49, 95% CI 0.42 to 5.36; I² = 81%), death (2 studies, 129 participants), and organ function measures (2 studies; 129 participants) compared to prebiotics. AUTHORS' CONCLUSIONS: This review highlights the severe lack of high-quality RCTs testing the efficacy of synbiotics, prebiotics or probiotics in solid organ transplant recipients. We have identified significant gaps in the evidence. Despite GI symptoms and postoperative infection being the most common reasons for high antibiotic use in this patient population, along with increased morbidity and the growing antimicrobial resistance, we found very few studies that adequately tested these as alternative treatments. There is currently no evidence to support or refute the use of synbiotics, prebiotics, or probiotics in solid organ transplant recipients, and findings should be viewed with caution. We have identified an area of significant uncertainty about the efficacy of synbiotics, prebiotics, or probiotics in solid organ transplant recipients. Future research in this field requires adequately powered RCTs comparing synbiotics, prebiotics, and probiotics separately and with placebo measuring a standard set of core transplant outcomes. Six studies are currently ongoing (822 proposed participants); therefore, it is possible that findings may change with their inclusion in future updates.
Asunto(s)
Enfermedades Cardiovasculares , Trasplante de Órganos , Probióticos , Simbióticos , Adulto , Albúminas , Antibacterianos/uso terapéutico , Disbiosis , Endotoxinas , Humanos , Lípidos , Prebióticos , Probióticos/uso terapéuticoRESUMEN
AIMS: People who live in rural areas have reduced access to appropriate and timely healthcare, leading to poorer health outcomes than their metropolitan-based counterparts. The aims of the workshops were to ascertain participants' perspectives on barriers to access to dialysis and transplantation, to identify and prioritize the roles of a rural patient navigator, to discuss the acceptability and feasibility of implementing this role and identify possible outcomes that could be used to measure the success of the programme in a clinical trial. METHODS: Rural patients (n = 19), their caregivers (n = 5) and health professionals (n = 18) from Australia participated in three workshops. We analysed the data using thematic analysis. RESULTS: We identified four themes related to access to dialysis and transplantation: overwhelmed by separate and disconnected health systems, unprepared for emotional toll and isolation, lack of practical support and inability to develop trust and rapport. Four themes related to the role of the patient navigator programme: valuing lived experience, offering cultural expertise, requiring a conduit, and flexibility of the job description. The key roles prioritized by participants were psychological support and networking, provision/consolidation of education, and provision of practical support. CONCLUSION: Rural patients, caregivers and health professionals believed that programmes that include navigators with lived experience of dialysis and kidney transplantation and cultural expertise, especially for Aboriginal Australians, may have the potential to improve patient experiences in accessing healthcare.
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Navegación de Pacientes , Insuficiencia Renal Crónica , Australia/epidemiología , Ensayos Clínicos como Asunto , Humanos , Diálisis Renal , Insuficiencia Renal Crónica/diagnóstico , Insuficiencia Renal Crónica/epidemiología , Insuficiencia Renal Crónica/terapia , Población RuralRESUMEN
Childhood undernutrition contributes to up to 45% of deaths in children under age 5. Moringa oleifera (moringa) leaves are nutrient dense and promote breastmilk production. We performed a systematic review assessing the impact of moringa leaf supplementation in humans and animals on the outcomes of iron, vitamin A status, the measures of growth, and/or breastmilk production. Our inclusion/exclusion criteria were as follows; inclusion: quantitative primary data assessing the effect of moringa leaf supplementation on humans or animals including any of the outcomes defined earlier with no exclusion for geography, age, or language. Exclusion: full text not available. Our search yielded 148 unique studies; among them, 33 were included (seven human studies and 26 animal studies). Quality assessment by Effective Public Health Practice Project guidelines was strong for one study and moderate for all other studies. In humans, moringa at higher (14-30 g/day) not lower (<10 g/day) doses improved hemoglobin (Hgb) in children with iron deficiency anemia, improved Hgb and vitamin A status in postmenopausal women, and increased BMI in HIV+ underweight adults. Moringa (0.5 g/day) also increased breastmilk volumes. In animals, moringa increased milk production in two of three studies, inconsistently affected growth, and had no effect on iron status. Evidence on moringa supplementation's utility is limited but promising. Larger, more rigorous trials are needed to characterize its impact.
Asunto(s)
Moringa oleifera , Animales , Niño , Suplementos Dietéticos , Femenino , Humanos , Hierro , Leche , Extractos Vegetales , Hojas de la Planta , Vitamina ARESUMEN
Outcomes relevant to treatment decision-making are inconsistently reported in trials involving glomerular disease. Here, we sought to establish a consensus-derived set of critically important outcomes designed to be reported in all future trials by using an online, international two-round Delphi survey in English. To develop this, patients with glomerular disease, caregivers and health professionals aged 18 years and older rated the importance of outcomes using a Likert scale and a Best-Worst scale. The absolute and relative importance was assessed and comments were analyzed thematically. Of 1198 participants who completed Round 1, 734 were patients/caregivers while 464 were health care professionals from 59 countries. Of 700 participants that completed Round 2, 412 were patients/caregivers and 288 were health care professionals. Need for dialysis or transplant, kidney function, death, cardiovascular disease, remission-relapse and life participation were the most important outcomes to patients/caregivers and health professionals. Patients/caregivers rated patient-reported outcomes higher while health care professionals rated hospitalization, death and remission/relapse higher. Four themes explained the reasons for their priorities: confronting death and compounded suffering, focusing on specific targets in glomerular disease, preserving meaning in life, and fostering self-management. Thus, consistent reporting of these critically important outcomes in all trials involving glomerular disease is hoped to improve patient-centered decision-making.