Putting patients at the center of kidney care transitions: PREPARE NOW, a cluster randomized controlled trial

Green, J.A.; Ephraim, Patti L.; Hill-Briggs, Felicia; Browne, Teri; Strigo, Tara S.; Hauer, Christoph; Stametz, Rebecca; Darer, Jonathan; Patel, Uptal D.; Lang-Lindsey, Katina; Bankes, Brian; Bolden, Shakur; Danielson, Patricia; Ruff, Suzanne; Schmidt, Lana; Swoboda, Amy; Woods, Peter Charles; Vinson, Brandi; Littlewood, Diane; Jackson, George L.; Pendergast, Jane; Russell, Jennifer St. Clair; Collins, Kelli K.; Norfolk, Evan; Bucaloiu, Ion D.; Kethireddy, Shravan; Collins, Charlotte; Davis, Daniel E.; dePrisco, Jeremy; Malloy, Dave; Diamantidis, Clarissa J.; Fulmer, Sherri; Martin, Jennifer A.; Schatell, Dori; Tangri, Navdeep; Sees, Amanda; Siegrist, Cory; Breed, Jeffrey; Medley, Amy; Graboski, Elisabeth; Billet, J; Hackenberg, M; Singer, Dale; Stewart, Stephanie; Alkon, Aviel; Bhavsar, Nrupen A.; Lewis-Boyér, LaPricia; Martz, Colin A.; Yule, Christina; Saunders, Muriel D.; Cameron, Blake; Boulware, L. Ebony

doi:10.1016/j.cct.2018.09.004

Cited by 29 publications

(42 citation statements)

References 64 publications

(41 reference statements)

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“…We drafted research questions and a research design, and received more feedback from patients and family members that informed the nal study design (see Table 2). 34 Three patient-centered themes emerged from our data related to engagement that informed our research plan: decision-making, care transitions, and outcomes. How much information does a patient and family member need?…”

Section: Resultsmentioning

confidence: 99%

“…As we move forward in our project (see Fig. 2), 34 patients and family members are compensated Co-Investigators, have been trained in the conduct of human subjects research, participate in team meetings and provide input on the study and intervention implementation. They also help disseminate information about our study.…”

Section: Ongoing Engagementmentioning

confidence: 99%

“…Co-author project journal article. 34 <<INSERT FIGURE 2 ABOUT HERE>> <<INSERT Table 3 ABOUT HERE>> Challenges Some of the challenges in PCOR engagement have emerged as we have executed our study and project activities. First, some of our patient Co-Investigators receive in-center hemodialysis, which limits their meeting availability on some days and times.…”

Section: Edited New Recruitment Letters For Education Classesmentioning

confidence: 99%

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

Browne

Swoboda²,

Ephraim

et al. 2020

Preprint

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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

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Section: Resultsmentioning

confidence: 99%

Section: Ongoing Engagementmentioning

confidence: 99%

Section: Edited New Recruitment Letters For Education Classesmentioning

confidence: 99%

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

Browne

Swoboda²,

Ephraim

et al. 2020

Preprint

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“…After convening the Co-Investigators, we asked them open-ended questions about what research ideas were essential to them. We drafted research questions and a research design, and received more feedback from patients and family members that informed the final study design (see Table 2 ) [ 32 ]. Three patient-centered themes emerged from our data related to engagement that informed our research plan: decision-making, care transitions, and outcomes.…”

Section: Resultsmentioning

confidence: 99%

“…As we moved forward in the project (see Fig. 2 ) [ 32 ], patients and family members are compensated Co-Investigators, have been trained in the conduct of human subjects research, participate in team meetings and provide input on the study and intervention implementation. They also help disseminate information about the study.…”

Section: Resultsmentioning

confidence: 99%

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

Browne

Swoboda²,

Ephraim

et al. 2020

Res Involv Engagem

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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.

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Progression of Chronic Kidney Disease

Elliott

Bhatt

et al. 2022

Evidence‐Based Nephrology

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Putting patients at the center of kidney care transitions: PREPARE NOW, a cluster randomized controlled trial

Abstract: NCT02722382.

Cited by 29 publications

References 64 publications

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

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

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

Progression of Chronic Kidney Disease

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