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1.
Pediatr Nephrol ; 2024 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-38668777

RESUMO

BACKGROUND: The circumstances surrounding chronic kidney disease and its impact on families can be complex and difficult to navigate, leading to these cases being labeled "challenging." CASE PRESENTATION: We present the case of an adolescent with kidney failure due to unremitting systemic illness and multiple complications ultimately resulting in the family's request to forgo dialysis. Medical team members wrestled with meeting the family's needs among internal and external constraints. CONCLUSION: Past experiences, systemic inequities, differing perspectives, and consequential decision-making within individual belief systems can lead to friction between and among medical team members and families. As pediatric nephrologists, we must shift our focus from the "challenging" patient or family to addressing what is challenging their ability to flourishing.

2.
JAMA ; 328(5): 451-459, 2022 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-35916847

RESUMO

Importance: Care of adults at profit vs nonprofit dialysis facilities has been associated with lower access to transplant. Whether profit status is associated with transplant access for pediatric patients with end-stage kidney disease is unknown. Objective: To determine whether profit status of dialysis facilities is associated with placement on the kidney transplant waiting list or receipt of kidney transplant among pediatric patients receiving maintenance dialysis. Design, Setting, and Participants: This retrospective cohort study reviewed the US Renal Data System records of 13 333 patients younger than 18 years who started dialysis from 2000 through 2018 in US dialysis facilities (followed up through June 30, 2019). Exposures: Time-updated profit status of dialysis facilities. Main Outcomes and Measures: Cox models, adjusted for clinical and demographic factors, were used to examine time to wait-listing and receipt of kidney transplant by profit status of dialysis facilities. Results: A total of 13 333 pediatric patients who started receiving maintenance dialysis were included in the analysis (median age, 12 years [IQR, 3-15 years]; 6054 females [45%]; 3321 non-Hispanic Black patients [25%]; 3695 Hispanic patients [28%]). During a median follow-up of 0.87 years (IQR, 0.39-1.85 years), the incidence of wait-listing was lower at profit facilities than at nonprofit facilities, 36.2 vs 49.8 per 100 person-years, respectively (absolute risk difference, -13.6 (95% CI, -15.4 to -11.8 per 100 person-years; adjusted hazard ratio [HR] for wait-listing at profit vs nonprofit facilities, 0.79; 95% CI, 0.75-0.83). During a median follow-up of 1.52 years (IQR, 0.75-2.87 years), the incidence of kidney transplant (living or deceased donor) was also lower at profit facilities than at nonprofit facilities, 21.5 vs 31.3 per 100 person-years, respectively; absolute risk difference, -9.8 (95% CI, -10.9 to -8.6 per 100 person-years) adjusted HR for kidney transplant at profit vs nonprofit facilities, 0.71 (95% CI, 0.67-0.74). Conclusions and Relevance: Among a cohort of pediatric patients receiving dialysis in the US from 2000 through 2018, profit facility status was associated with longer time to wait-listing and longer time to kidney transplant.


Assuntos
Instituições de Assistência Ambulatorial , Acessibilidade aos Serviços de Saúde , Falência Renal Crônica , Transplante de Rim , Diálise Renal , Listas de Espera , Adolescente , Instituições de Assistência Ambulatorial/economia , Instituições de Assistência Ambulatorial/organização & administração , Instituições de Assistência Ambulatorial/estatística & dados numéricos , Criança , Pré-Escolar , Feminino , Administração de Instituições de Saúde/economia , Administração de Instituições de Saúde/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/economia , Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Humanos , Falência Renal Crônica/economia , Falência Renal Crônica/epidemiologia , Falência Renal Crônica/terapia , Transplante de Rim/economia , Transplante de Rim/estatística & dados numéricos , Masculino , Organizações sem Fins Lucrativos/economia , Organizações sem Fins Lucrativos/organização & administração , Organizações sem Fins Lucrativos/estatística & dados numéricos , Propriedade/economia , Propriedade/estatística & dados numéricos , Diálise Renal/economia , Diálise Renal/estatística & dados numéricos , Estudos Retrospectivos , Fatores de Tempo
4.
Artigo em Inglês | MEDLINE | ID: mdl-37871960

RESUMO

BACKGROUND: Children with CKD are at risk for impaired neurocognitive functioning. We investigated metabolomic associations with neurocognition in children with CKD. METHODS: We leveraged data from the Chronic Kidney Disease in Children (CKiD) study and the Neurocognitive Assessment and Magnetic Resonance Imaging Analysis of Children and Young Adults with Chronic Kidney Disease (NiCK) study. CKiD is a multi-institutional cohort that enrolled children aged 6 months to 16 years with eGFR 30-90 ml/min per 1.73 m 2 ( n =569). NiCK is a single-center cross-sectional study of participants aged 8-25 years with eGFR<90 ml/min per 1.73 m 2 ( n =60) and matched healthy controls ( n =67). Untargeted metabolomic quantification was performed on plasma (CKiD, 622 metabolites) and serum (NiCK, 825 metabolites) samples. Four neurocognitive domains were assessed: intelligence, attention regulation, working memory, and parent ratings of executive function. Repeat assessments were performed in CKiD at 2-year intervals. Linear regression and linear mixed-effects regression analyses adjusting for age, sex, delivery history, hypertension, proteinuria, CKD duration, and glomerular versus nonglomerular diagnosis were used to identify metabolites associated with neurocognitive z-scores. Analyses were performed with and without adjustment for eGFR. RESULTS: There were multiple metabolite associations with neurocognition observed in at least two of the analytic samples (CKiD baseline, CKiD follow-up, and NiCK CKD). Most of these metabolites were significantly elevated in children with CKD compared with healthy controls in NiCK. Notable signals included associations with parental ratings of executive function: phenylacetylglutamine, indoleacetylglutamine, and trimethylamine N-oxide-and with intelligence: γ -glutamyl amino acids and aconitate. CONCLUSIONS: Several metabolites were associated with neurocognitive dysfunction in pediatric CKD, implicating gut microbiome-derived substances, mitochondrial dysfunction, and altered energy metabolism, circulating toxins, and redox homeostasis.

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