scholarly journals Engaging patients and family members to design and implement patient-centered kidney disease research

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Teri Browne ◽  
Amy Swoboda ◽  
Patti L. Ephraim ◽  
Katina Lang-Lindsey ◽  
Jamie A. Green ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Family Member ◽  
Outcomes Research ◽  
Family Members ◽  
The United States ◽  
Transitions Of Care ◽  
End Stage Kidney Disease ◽  
Patient Centered ◽  
Disease Research ◽  
End Stage

Plain English summary We need more research projects that partner and engage with patients and family members as team members. Doing this requires that patients and family members set research priorities and fully participate in research teams. Models for this patient and family member engagement as research partners can help increase patient centered outcomes research. In this article, we describe how we have successfully engaged patients with kidney disease and family members as Co-Investigators on a 5-year research project testing a health system intervention to improve kidney disease care. Abstract Background This article describes a method for successful engagement of patients and family members in all stages of a 5-year comparative effectiveness research trial to improve transitions of care for patients from chronic kidney disease to end-stage kidney disease. Methods This project utilized the Patient-Centered Outcomes Research Institute’s conceptual model for engagement with patients and family members. We conducted a qualitative analysis of grant planning meetings to determine patient and family member Co-Investigators’ priorities for research and to include these engagement efforts in the research design. Patient and family member Co-Investigators partnered in writing this paper. Results Patients and family members were successfully engaged in remote and in-person meetings to contribute actively to research planning and implementation stages. Three patient-centered themes emerged from our data related to engagement that informed our research plan: kidney disease treatment decision-making, care transitions from chronic to end-stage kidney disease, and patient-centered outcomes. Conclusions The model we have employed represents a new paradigm for kidney disease research in the United States, with patients and family members engaged as full research partners. As a result, the study tests an intervention that directly responds to their needs, and it prioritizes the collection of outcomes data most relevant to patient and family member Co-Investigators. Trial registration NCT02722382.

scholarly journals Engaging Patients and Family Members to Design and Implement Patient-Centered Kidney Disease Research

2020 ◽  
Author(s):  
Teri Browne ◽  
Amy Swoboda ◽  
Patti L. Ephraim ◽  
Katina Lang-Lindsey ◽  
Jamie A. Green ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Family Member ◽  
Family Members ◽  
The United States ◽  
Transitions Of Care ◽  
New Paradigm ◽  
End Stage Kidney Disease ◽  
Patient Centered ◽  
Disease Research ◽  
End Stage

Abstract Background: This article describes a method for successful engagement of patients and family members in all stages of a 5-year comparative effectiveness research trial to improve transitions of care for patients from chronic kidney disease to end-stage kidney disease.Methods: This project utilized the Patient-Centered Outcomes Research Institute's conceptual model for engagement with patients and family members. We conducted a qualitative analysis of grant planning meetings to determine patient and family member Co-Investigators' priorities for research and to include these engagement efforts in the research design. Patient and family member Co-Investigators partnered in writing this paper.Results: Patients and family members were successfully engaged in remote and in-person meetings to contribute actively to research planning and implementation stages. Three patient-centered themes emerged from our data related to engagement that informed our research plan: kidney disease treatment decision-making, care transitions from chronic to end-stage kidney disease, and patient-centered outcomes. Conclusions: The model we have employed represents a new paradigm for kidney disease research in the United States, with patients and family members engaged as full research partners. As a result, the study tests an intervention that directly responds to their needs, and it prioritizes the collection of outcomes data most relevant to patient and family member Co-Investigators.Trial registration: NCT02722382

scholarly journals Engaging Patients and Family Members to Design and Implement Patient-Centered Kidney Disease Research

2020 ◽  
Author(s):  
Teri Browne ◽  
Amy Swoboda ◽  
Patti L. Ephraim ◽  
Katina Lang-Lindsey ◽  
Jamie A. Green ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Family Member ◽  
Family Members ◽  
Treatment Decision ◽  
The United States ◽  
Transitions Of Care ◽  
New Paradigm ◽  
Patient Centered ◽  
Disease Research ◽  
End Stage

Abstract Background: This article describes a method for successful engagement of patients and family members in a 5-year comparative effectiveness research trial to improve transitions of care for patients from chronic kidney disease to end-stage kidney disease.Methods: This project utilized the Patient-Centered Outcomes Research Institute's conceptual model for engagement with patients and family members. We conducted a qualitative analysis of grant planning meetings to determine our patient and family member Co-Investigators' priorities for research and to include these engagement efforts in the research design. Patient and family member Co-Investigators partnered in writing this paper.Results: Patients and family members were successfully engaged in remote and in-person meetings to contribute actively to research planning and implementation stages. Three patient-centered themes emerged from our data related to engagement that informed our research plan: kidney disease treatment decision-making, care transitions from chronic to end-stage kidney disease, and patient-centered outcomes. Conclusions: The model we have employed represents a new paradigm for kidney disease research in the United States, with patients and family members engaged as full research partners. As a result, the study tests an intervention that directly responds to their needs, and it prioritizes the collection of outcomes data most relevant to patient and family member Co-Investigators.Trial registration: Clinical Trials.gov, NCT02722382. Registered 30 March 2016, https://clinicaltrials.gov/ct2/show/NCT02722382?term=NCT02722382&draw=2&rank=1

scholarly journals End-Stage Kidney Disease From Scleroderma in the United States, 1996 to 2012

2018 ◽  
Vol 3 (1) ◽  
pp. 148-154 ◽  
Author(s):  
Donal J. Sexton ◽  
Scott Reule ◽  
Robert N. Foley
Keyword(s):  
United States ◽  
Kidney Disease ◽  
The United States ◽  
End Stage Kidney Disease ◽  
End Stage

scholarly journals Outcomes Associated With Apixaban Use in Patients With End-Stage Kidney Disease and Atrial Fibrillation in the United States

Circulation ◽  
2018 ◽  
Vol 138 (15) ◽  
pp. 1519-1529 ◽  
Author(s):  
Konstantinos C. Siontis ◽  
Xiaosong Zhang ◽  
Ashley Eckard ◽  
Nicole Bhave ◽  
Douglas E. Schaubel ◽  
...  
Keyword(s):  
United States ◽  
Atrial Fibrillation ◽  
Kidney Disease ◽  
The United States ◽  
End Stage Kidney Disease ◽  
End Stage

scholarly journals A Randomized Controlled Trial to Evaluate and Assess the Effect of Comprehensive Pre-End Stage Kidney Disease Education on Home Dialysis Use in Veterans, Rationale and Design

2021 ◽  
Author(s):  
Ashutosh M. Shukla ◽  
Jennifer Hale-Gallardo ◽  
Tatiana Orozco ◽  
Ivette Freytes ◽  
Sergio Romero ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Controlled Trial ◽  
End Stage Kidney Disease ◽  
Patient Centered ◽  
Advanced Chronic Kidney Disease ◽  
Home Dialysis ◽  
Clinical Patient ◽  
Randomized Controlled ◽  
The Us ◽  
End Stage

Abstract Background Informed dialysis selection and greater home dialysis use are the two long-desired, underachieved targets of advanced chronic kidney disease care in the US healthcare system. Observational institutional studies have shown that comprehensive pre-end stage kidney disease (ESKD) disease education (CPE) can improve both these outcomes. However, lack of validated protocols, well-controlled studies, and systemic models have limited wide-spread adoption of CPE in the US. We hypothesized that a universal CPE and patient-centered initiation of renal replacement therapy can improve multiple clinical, patient-centered and health service outcomes in advanced chronic kidney disease (CKD) and ESKD.Methods Trial to Evaluate and Assess the effects of CPE on Home dialysis in Veterans (TEACH-VET) is a mixed method randomized controlled trial aimed to evaluate the effects of a system-based approach for providing CPE to all Veterans with advanced CKD across a regional healthcare System. The study will randomize 544 Veterans with non-dialysis stage 4 and 5 CKD in a 1:1 allocation stratified by their annual family income and the stage of CKD to an intervention (CPE) arm or control arm. Intervention arm will receive a two-phase CPE in an intent-to-teach manner. Control arm will receive usual clinical care supplemented by resources for the freely-available kidney disease information. Participants will be followed after intervention/control for the duration of the study or until 90-days post-ESKD, whichever occurs earlier.Results The primary outcome will assess the proportion of Veterans using home dialysis at 90-days post-ESKD, and secondary outcomes will include post-intervention/control CKD knowledge, confidence in dialysis decision and home dialysis selection. Qualitative arm of the study will use semi-structured interviews to in-depth assess Veterans’ satisfaction with the intervention, preference for delivery, and barriers and facilitators to home dialysis selection and use. Several post-ESKD clinical, patient-centered and health services outcomes will be assessed 90-days post-ESKD as additional secondary outcomes.Conclusion The results will provide evidence regarding the need and efficacy of a system-based, patient-centered approach towards universal CPE for all patients with advanced CKD. If successful, this may provide a blueprint for developing such programs across the similar healthcare infrastructures throughout the country.Trial registration: NCT04064086

scholarly journals Contraceptive Use Among Women With End-Stage Kidney Disease on Dialysis in the United States

2020 ◽  
Vol 2 (6) ◽  
pp. 707-715.e1
Author(s):  
Silvi Shah ◽  
Annette L. Christianson ◽  
Charuhas V. Thakar ◽  
Samantha Kramer ◽  
Karthikeyan Meganathan ◽  
...  
Keyword(s):  
United States ◽  
Kidney Disease ◽  
Contraceptive Use ◽  
The United States ◽  
End Stage Kidney Disease ◽  
End Stage

Trends in Place of Death for Individuals With Deaths Attributed to Advanced Chronic or End-Stage Kidney Disease in the United States

2021 ◽  
Vol 61 (1) ◽  
pp. 112-120.e1
Author(s):  
Sarah H. Cross ◽  
Joshua R. Lakin ◽  
Mallika Mendu ◽  
Ernest I. Mandel ◽  
Haider J. Warraich
Keyword(s):  
United States ◽  
Kidney Disease ◽  
The United States ◽  
Place Of Death ◽  
End Stage Kidney Disease ◽  
End Stage

scholarly journals Response by Siontis et al to Letter Regarding Article, “Outcomes Associated With Apixaban Use in Patients With End-Stage Kidney Disease and Atrial Fibrillation in the United States”

Circulation ◽  
2019 ◽  
Vol 139 (12) ◽  
pp. 1563-1564
Author(s):  
Konstantinos C. Siontis ◽  
Xiaosong Zhang ◽  
Douglas E. Schaubel ◽  
Xiaoxi Yao ◽  
Peter A. Noseworthy ◽  
...  
Keyword(s):  
United States ◽  
Atrial Fibrillation ◽  
Kidney Disease ◽  
The United States ◽  
End Stage Kidney Disease ◽  
End Stage

scholarly journals Hypoglycemic and Hyperglycemic Crises Among U.S. Adults With Diabetes and End-stage Kidney Disease: Population-Based Study, 2013–2017

2021 ◽  
Author(s):  
Rodolfo J. Galindo ◽  
Mohammed K. Ali ◽  
Shealeigh A. Funni ◽  
Andrew B. Dodge ◽  
Shaheen S. Kurani ◽  
...  
Keyword(s):  
Kidney Disease ◽  
The United States ◽  
Population Based ◽  
Emergency Department Visits ◽  
End Stage Kidney Disease ◽  
Population Based Study ◽  
Hyperglycemic Hyperosmolar State ◽  
Patients With Diabetes ◽  
End Stage ◽  
Event Rates

<b>Objective</b>: We characterized annual trends of severe hypoglycemic and hyperglycemic crises (diabetic ketoacidosis/hyperglycemic hyperosmolar state) in patients with diabetes and end-stage kidney disease (DM/ESKD). <p> </p> <p><b>Design</b>: Nationwide, retrospective study of adults (≥18 years) with DM/ESKD, from the United States Renal Data System registry, 2013 to 2017. Primary outcome was annual rates of emergency department visits or hospitalizations for hypoglycemic and hyperglycemic crises, reported as number of events/1000 person-years. Adjusted event rates and risk factors were adjusted for patient age, sex, race/ethnicity, dialysis modality, comorbidities, treatment regimen and U.S. region.</p> <p> </p> <p><b>Results</b>: Among 521,789 adults with DM/ESKD (median age 65 years [IQR 57-73], 56.1% male, and 46% White), overall adjusted rates of hypoglycemic and hyperglycemic crises were 53.64 and 18.24 per 1000 person-years, respectively. For both hypoglycemia and hyperglycemia crises, the risks decreased with age and were lowest in older patients (≥75 vs 18-44 years: IRR 0.35 [95% CI 0.33-0.37] and 0.03 [0.02-0.03], women (IRR 1.09 [1.06-1.12] and 1.44 [1.35-1.54]), and with smoking (IRR 1.36 [1.28-1.43] and 1.71 [1.53-1.91]), substance abuse (IRR 1.27 [1.15-1.42] and 1.53 [1.23-1.9]), retinopathy (IRR 1.10 [1.06-1.15] and 1.36 [1.26-1.47]), and insulin therapy (vs. no therapy; IRR 0.60 [0.59-0.63] and 0.44 [0.39-0.48]), respectively. For hypoglycemia, specifically, additional risk was conferred by Black race (IRR 1.11 [1.08-1.15]) and amputation history (IRR 1.20 [1.13-1.27]).</p> <p> </p> <p><b>Conclusions</b>: In this nationwide study of patients with DM/ESKD, hypoglycemic crises were three-fold more common than hyperglycemic crises, greatly exceeding national reports in non-dialysis patients with chronic kidney disease. Young, Black, and female patients were disproportionately affected. </p>

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