Advanced CKD Care and Decision Making: Which Health Care Professionals Do Patients Rely on for CKD Treatment and Advice?

Barrett, Tyler M.; Green, Jamie A.; Boulware, L. Ebony; Diamantidis, Clarissa J.; Il’Giovine, Clare; Jackson, George L.; Pendergast, Jane; Peskoe, Sarah B.; Strigo, Tara S.; Billet, J; Browne, Jason; Bucaloiu, Ion D.; Collins, Charlotte; Davis, Daniel E.; Fulmer, Sherri; Green, Jamie; Hauer, Chelsie; Norfolk, Evan; Richner, Michelle; Siegrist, Cory; Smeal, Wendy; Stametz, Rebecca; Solomon, Mary; Yule, Christina; Ephraim, Patti L.; Hill‐Briggs, Felicia; Browne, Teri; Tangri, Navdeep; Bankes, Brian; Bolden, Shakur; Danielson, Patricia; Lang-Lindsey, Katina; Ruff, Suzanne; Schmidt, Lana; Swoboda, Amy; Woods, Peter Charles; Clynes, Diana; Stewart, Stephanie; Schatell, Dori; Klicko, Kristi; Vinson, Brandi; Russell, Jennifer St. Clair; Collins, Kelli K.; Martin, Jennifer A.; Singer, Dale; Littlewood, Diane

doi:10.1016/j.xkme.2020.05.008

Cited by 11 publications

(12 citation statements)

References 36 publications

(40 reference statements)

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“…The majority of them are white (75%). Compared to the demographics of the nal study population, 49 this group is younger (study mean age 71), more diverse (study mean ethnicity 97% white), and has similar gender distribution (study mean 59% women). However, at the time when we were assembling the study team, we did not have a study population in mind, therefore exact demographic similarities between the study team and research sample was not a priority.…”

Section: Methodsmentioning

confidence: 89%

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 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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Section: Methodsmentioning

confidence: 89%

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

Browne

Swoboda²,

Ephraim

et al. 2020

Preprint

Self Cite

View full text Add to dashboard Cite

show abstract

“…The majority of them are white (75%). Compared to the demographics of the final study population [ 48 ], this group is younger (study mean age 71), more diverse (study mean ethnicity 97% white), and has similar gender distribution (study mean 59% women). However, at the time when we were assembling the study team, we did not have a study population in mind, therefore exact demographic similarities between the study team and research sample was not a priority.…”

Section: Methodsmentioning

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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“…1 – 9 One example is the PREPARE NOW study, a 5-year cluster randomized controlled trial examining the effect of systemic changes on kidney disease care. 10 – 13 This study, funded by the Patient-Centered Outcomes Research Institute (PCORI), includes people with kidney disease and family members of people with kidney disease as study co-investigators and kidney organization stakeholders as research team members.…”

Section: Introductionmentioning

confidence: 99%

The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study

et al. 2022

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Background Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. Objective To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? Design We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants’ experiences with the impact of COVID-19 on research engagement. Participants Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. Approach We used a content analysis approach and identified the main themes using an inductive process. Key Results Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. Conclusions COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. Trial Registration Clinicaltrials.gov NCT02722382

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Advanced CKD Care and Decision Making: Which Health Care Professionals Do Patients Rely on for CKD Treatment and Advice?

Abstract: Graphical Abstract

Cited by 11 publications

References 36 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

The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study

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