“I Wish Someone Had Told Me That Could Happen”: A Thematic Analysis of Patients’ Unexpected Experiences With End-Stage Kidney Disease Treatment
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SUBMITTER: DePasquale N
PROVIDER: S-EPMC7534108 | biostudies-literature | 2019 Sep
REPOSITORIES: biostudies-literature
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Project description:Information sharing can be regarded as a form of cooperative behavior protected by the work of a reputation system. Yet, deception in communication is common. The research examined the possibility that speakers use epistemic markers to preempt being seen as uncooperative even though they in fact are. Epistemic markers convey the speakers' certainty and involvement in the acquisition of the information. When speakers present a lie as indirectly acquired or uncertain, they gain if the lie is believed and likely do not suffer if it is discovered. In our study, speakers of English and Italian (where epistemic markers were presented lexically) and of Estonian and Turkish (where they were presented grammatically through evidentials) had to imagine being a speaker in a conversation and choose a response to a question. The response options varied 1) the truth of the part of the response addressing the question at issue and 2) whether the epistemic marker indicated that the speaker had acquired the information directly or indirectly. Across languages, if participants chose to tell a lie, they were likely to present it with an indirect epistemic marker, thus providing evidence for preemptive action accompanying uncooperative behavior. For English and Italian participants, this preemptive action depended respectively on resource availability and relationship with the addressee, suggesting cultural variability in the circumstances that trigger it.
| S-EPMC6481770 | biostudies-literature
Project description:BACKGROUND:This is the first qualitative study to explore patient decision-making regarding end-stage kidney disease (ESKD) treatment in sub-Saharan Africa. The study addresses an important gap in the literature concerning choice and decision-making in an international context. METHODS:The study employed a qualitative research design, using grounded theory methodology. In-depth interviews were conducted with twenty-two adult patients with ESKD in 3 clinical settings in Ghana. Data analysis involved coding and a constant comparative approach to generate key themes. Ethical approval was gained from relevant ethics committees both in Ghana and the United Kingdom. RESULTS:Four main factors (personal, financial, healthcare system, and support network) were identified to influence patient decision-making regarding ESKD treatment in Ghana. Treatment was initiated for various reasons, including, initially, the urgent need to avoid premature death. Many approached their condition hoping for a cure and did not always understand the chronic nature of their condition. Financial and geographical inaccessibility of renal replacement therapy (RRT), as well as a relative lack of biomedical treatment choices, made decision making daunting for the individual with ESKD in Ghana. The subject of death or conservative management was not openly discussed. Rather patients did everything possible to seek alternative forms of treatment, including the simultaneous use of other non-RRT and traditional or faith-based healing approaches. CONCLUSIONS:Whilst similarities exist, this study illuminates stark cultural and contextual differences which make decision-making on ESKD treatment a daunting experience for the individual with ESKD in Ghana - as compared to those in high-income countries. The challenges associated with ESKD management in Ghana calls for meticulous efforts at primary prevention of the disease, including interventions directed at effective management of diabetes mellitus, hypertension and other chronic kidney disease (CKD) precursor conditions. Enhancing information provision would promote informed decision making, particularly within the initial stages of patient decision-making.
| S-EPMC6299918 | biostudies-literature
Project description:BackgroundChronic kidney disease (CKD) progression can be a cause and potentially a consequence of anemia. Previous studies suggesting that anemia is associated with CKD progression have not utilized methodologic approaches to address time-dependent confounding.MethodsWe evaluated the association of anemia (defined using World Health Organization criteria of hemoglobin <12 g/dL in women and <13 g/dL in men) with incident ESRD and all-cause death in individuals with CKD using data from the Chronic Renal Insufficiency Cohort Study. Marginal structural models were used to account for time-dependent confounding.ResultsAmong 3919 participants, 1859 (47.4%) had anemia at baseline. Over median follow up of 7.8 years, we observed 1,010 ESRD events and 994 deaths. In multivariable analyses, individuals with anemia had higher risk for ESRD compared to those without (HR 1.62, 95% CI 1.24-2.11). In stratified analyses, the increased risk for incident ESRD with anemia was observed in males (HR 2.15, 95% CI: 1.53-3.02) but not females (HR 1.20, 95% CI 0.82-1.78. The association between anemia and ESRD was significant among all racial/ethnic groups except non-Hispanic blacks (non-Hispanic white, HR 2.16, 95% CI 1.53-3.06; Hispanic, HR 1.92, 1.04-3.51; others, HR 2.94; 95% CI 1.16-7.44; non-Hispanic black, HR 1.39; 95% CI 0.95-2.02). There was no association between anemia and all-cause death.ConclusionsIn this cohort, anemia was independently associated with increased risk for incident ESRD. Future work is needed to evaluate the mechanisms by which anemia leads to CKD progression as well as the impact of novel therapeutic agents to treat anemia.
| S-EPMC7591144 | biostudies-literature
Project description:BACKGROUND AND OBJECTIVES:We investigated the incidence of ESKD after surgical management of kidney cancer in the Australian state of Queensland, and described patterns in the initiation of kidney replacement therapy resulting from kidney cancer across Australia. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS:All newly diagnosed cases of kidney cancer in the Australian state of Queensland between January of 2009 and December of 2014 were ascertained through the Queensland Cancer Registry. There were 2739 patients included in our analysis. Patients who developed ESKD were identified using international classification of disease-10-coded hospital administrative data. Incidence rate and 3-year cumulative incidence were calculated, and multivariable Cox proportional hazards models were used to identify factors associated with ESKD. Additional descriptive analysis was undertaken of Australian population data. RESULTS:The incidence rate of ESKD in all patients was 4.9 (95% confidence interval [95% CI], 3.9 to 6.2) per 1000 patient-years. The 3-year cumulative incidence was 1.7%, 1.9%, and 1.0% for all patients, and patients managed with radical or partial nephrectomy, respectively. Apart from preoperative kidney disease, exposures associated with increased ESKD risk were age?65 years (adjusted hazard ratio [aHR], 2.0; 95% CI, 1.2 to 3.2), male sex (aHR, 2.3; 95% CI, 1.3 to 4.3), preoperative diabetes (aHR, 1.8; 95% CI, 1.0 to 3.3), American Society of Anesthesiologists classification ?3 (aHR, 4.0; 95% CI, 2.2 to 7.4), socioeconomic disadvantage (aHR, 1.6; 95% CI, 0.9 to 2.7), and postoperative length of hospitalization ?6 days (aHR, 2.1; 95% CI, 1.4 to 3.0). Australia-wide trends indicate that the rate of kidney replacement therapy after oncologic nephrectomy doubled between 1995 and 2015, from 0.3 to 0.6 per 100,000 per year. CONCLUSIONS:In Queensland between 2009 and 2014, one in 53 patients managed with radical nephrectomy and one in 100 patients managed with partial nephrectomy developed ESKD within 3 years of surgery. PODCAST:This article contains a podcast at https://www.asn-online.org/media/podcast/CJASN/2018_09_28_CJASNPodcast_18_1_.mp3.
| S-EPMC6237064 | biostudies-literature
Project description:Purpose of reviewThis review evaluates current recommendations for pain management in chronic kidney disease (CKD) and end-stage kidney disease (ESKD) with a specific focus on evidence for opioid analgesia, including the partial agonist, buprenorphine.Recent findingsRecent evidence supports the use of physical activity and other nonpharmacologic therapies, either alone or with pharmacological therapies, for pain management. Nonopioid analgesics, including acetaminophen, topical analgesics, gabapentinoids, serotonin-norepinephrine reuptake inhibitors, and TCA may be considered based on pain cause and type, with careful dose considerations in kidney disease. NSAIDs may be used in CKD and ESKD for short durations with careful monitoring. Opioid use should be minimized and reserved for patients who have failed other therapies. Opioids have been associated with increased adverse events in this population, and thus should be used cautiously after risk/benefit discussion with the patient. Opioids that are safer to use in kidney disease include oxycodone, hydromorphone, fentanyl, methadone, and buprenorphine. Buprenorphine appears to be a promising and safer option due to its partial agonism at the mu opioid receptor.SummaryPain is poorly managed in patients with kidney disease. Nonpharmacological and nonopioid analgesics should be first-line approaches for pain management. Opioid use should be minimized with careful monitoring and dose adjustment.
| S-EPMC7753951 | biostudies-literature
Project description:Risk of end-stage renal disease (ESRD) in kidney donors has been compared with risk faced by the general population, but the general population represents an unscreened, high-risk comparator. A comparison to similarly screened healthy nondonors would more properly estimate the sequelae of kidney donation.To compare the risk of ESRD in kidney donors with that of a healthy cohort of nondonors who are at equally low risk of renal disease and free of contraindications to live donation and to stratify these comparisons by patient demographics.A cohort of 96,217 kidney donors in the United States between April 1994 and November 2011 and a cohort of 20,024 participants of the Third National Health and Nutrition Examination Survey (NHANES III) were linked to Centers for Medicare & Medicaid Services data to ascertain development of ESRD, which was defined as the initiation of maintenance dialysis, placement on the waiting list, or receipt of a living or deceased donor kidney transplant, whichever was identified first. Maximum follow-up was 15.0 years; median follow-up was 7.6 years (interquartile range [IQR], 3.9-11.5 years) for kidney donors and 15.0 years (IQR, 13.7-15.0 years) for matched healthy nondonors.Cumulative incidence and lifetime risk of ESRD.Among live donors, with median follow-up of 7.6 years (maximum, 15.0), ESRD developed in 99 individuals in a mean (SD) of 8.6 (3.6) years after donation. Among matched healthy nondonors, with median follow-up of 15.0 years (maximum, 15.0), ESRD developed in 36 nondonors in 10.7 (3.2) years, drawn from 17 ESRD events in the unmatched healthy nondonor pool of 9364. Estimated risk of ESRD at 15 years after donation was 30.8 per 10,000 (95% CI, 24.3-38.5) in kidney donors and 3.9 per 10,000 (95% CI, 0.8-8.9) in their matched healthy nondonor counterparts (P?<?.001). This difference was observed in both black and white individuals, with an estimated risk of 74.7 per 10,000 black donors (95% CI, 47.8-105.8) vs 23.9 per 10,000 black nondonors (95% CI, 1.6-62.4; P?<?.001) and an estimated risk of 22.7 per 10,000 white donors (95% CI, 15.6-30.1) vs 0.0 white nondonors (P?<?.001). Estimated lifetime risk of ESRD was 90 per 10,000 donors, 326 per 10,000 unscreened nondonors (general population), and 14 per 10,000 healthy nondonors.Compared with matched healthy nondonors, kidney donors had an increased risk of ESRD over a median of 7.6 years; however, the magnitude of the absolute risk increase was small. These findings may help inform discussions with persons considering live kidney donation.
| S-EPMC4411956 | biostudies-literature
Project description:Cortical bone represents nearly 80 % of human bone mass and is the major determinant of bone strength; however, cortical bone parameters and their relationship to trabecular bone in the pediatric chronic kidney disease (CKD) population have not been evaluated.Biochemical values and cortical and trabecular bone parameters were assessed in 22 pediatric dialysis patients: 12 with high and 10 with normal to low trabecular bone turnover.Trabecular bone turnover and osteoid volume correlated with parathyroid hormone (PTH) levels (r?=?0.86, p?<?0.01 and r?=?0.93, p?<?0.01, respectively). Internal cortical osteonal bone formation rate was directly related to alkaline phosphatase (r?=?0.45, p?<?0.05) and inversely related to insulin-like growth factor (IGF)-1 values (r?=?-0.55, p?<?0.01), and internal cortical porosity was also related to serum alkaline phosphatase levels (r?=?0.57, p?<?0.01). A similar relationship was not found between external cortical bone formation rate and parameters of bone turnover and porosity, however. No relationship was found between trabecular and cortical bone formation rates.Secondary hyperparathyroidism was associated with increased external cortical, relative to internal cortical, osteonal activity in pediatric dialysis patients. The clinical consequences of these changes and their response to therapy for secondary hyperparathyroidism remain to be defined.
| S-EPMC4315739 | biostudies-literature
Project description:Recent advances in genetics of renal disease have deepened our understanding of progressive kidney disease. Here, we review genetic variants that are of particular importance to progressive glomerular disease that result in end-stage kidney disease (ESKD). Some of the most striking findings relate to APOL1 genetic variants, seen exclusively in individuals of sub-Saharan African descent, that create a predisposition to particular renal disorders, including focal segmental glomerulosclerosis and arterionephrosclerosis. We also review the genetics of cardiovascular disease in ESKD and note that little work has been published on the genetics of other ESKD complications, including anemia, bone disease, and infections. Deeper understanding of the genetics of ESKD and its complications may lead to new therapies that are tailored to an individual patient's genetic profile or are discovered based on genetic approaches that identify novel pathways of renal cell injury and repair.
| S-EPMC8351533 | biostudies-literature
Project description:BACKGROUND/AIMS:Decision-making in elderly patients considering dialysis is highly complex. With the increasing number of elderly with end-stage kidney disease (ESKD), it may be important to assess geriatric impairments in this population. The aim of the Geriatric assessment in OLder patients starting Dialysis (GOLD) study was to assess the prevalence of geriatric impairments and frailty in the elderly ESKD population by means of a geriatric assessment (GA), which is a comprehensive tool for overall health assessment. METHODS:This study included 285 patients ≥65 years: 196 patients at the time of dialysis initiation and 89 patients who chose maximal conservative management (MCM). The GA assessed cognition, mood, nutritional status, (instrumental) activities of daily living (ADL), mobility, comorbidity burden, quality of life and overall frailty. RESULTS:The mean age of the participants was 78 years and 36% were women. Of the incident dialysis patients, 77% started haemodialysis and 23% started peritoneal dialysis. Geriatric impairments were highly prevalent in both dialysis and MCM patients. Most frequently impaired geriatric domains in the dialysis group were functional performance (ADL 29%, instrumental ADL (iADL) 79%), cognition (67%) and comorbidity (41%). According to the GA, 77% in the dialysis group and 88% in the MCM group had 2 or more geriatric impairments. In the MCM group, functional impairment (ADL 45%, iADL 85%) was highly prevalent. CONCLUSIONS:Geriatric impairments are highly prevalent in the elderly ESKD population. Since impairments can be missed when not searched for in regular (pre)dialysis care, the first step of improving nephrologic care is awareness of the extensiveness of geriatric impairment.
| S-EPMC6381867 | biostudies-other
Project description:BACKGROUND:Kidney transplantation is considered best practice treatment for end stage kidney disease (ESKD), however Indigenous patients are substantially less likely to receive either a deceased or live donor kidney transplant than non-Indigenous patients. We describe Indigenous peoples' experiences and perspectives including traditional values around kidney transplantation to inform international transplant programs. METHODS:We conducted a systematic review of qualitative studies involving Indigenous adults who have experience with or perceptions of kidney transplantation. We searched MEDLINE, Embase, PsychINFO, and CINAHL, in conjunction with analysis of Google Scholar and reference lists of related studies till July 2019. We utilised thematic synthesis to analyse data. Completeness of reporting in studies was evaluated using the Consolidated Criteria for Reporting Qualitative Studies (COREQ) framework. RESULTS:Eight studies involving 225 Indigenous participants were included. Five themes were identified: strong desire for transplantation (seeking normality and freedom from dialysis, wanting to reduce burden of disease within community); lack of partnership in shared decision-making (receiving inadequate information, ineffective communication); barriers to live kidney donation (difficulty asking, apprehension about impact on donor, avoiding additional financial burden and fear of complications); cultural considerations (influence of traditional values and beliefs, reconciling traditional values with pragmatic need); and experiencing lack of cultural competence in clinical care (struggling with prejudice and ignorance, mistrust of clinicians and health system). CONCLUSION:Indigenous participants had a strong desire for a kidney transplant and recognised the need for more readily available kidney transplants for others in their communities with ESKD. However, they faced prejudice and a lack of cultural competence by health workers as well as wider barriers to transplantation in systems that did not support effective and culturally appropriate delivery of information and care. Traditional cultural values also influenced decisions regarding kidney transplantation but such values were moderated when considering transplantation. Transplantation programs need to identify and mitigate barriers, such as the financial burden, promote cultural safety and incorporate traditional values into the promotion of transplantation in order to address inequitable transplantation rates. REGISTRATION:Not applicable.
| S-EPMC6937677 | biostudies-literature