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. 2021 May 3;2(7):1115-1123.
doi: 10.34067/KID.0002382021. eCollection 2021 Jul 29.

Stakeholder-Guided Development of Dialysis Vascular Access Education Materials

Adeline Dorough  1 , Julia H Narendra  1 , Caroline Wilkie  2 , Akhil Hegde  1 , Kawan Swain  1 , Emily H Chang  1 , Terence Oliver  3 , Jennifer E Flythe  1   4
Affiliations

Stakeholder-Guided Development of Dialysis Vascular Access Education Materials

Adeline Dorough et al. Kidney360. .

Abstract

Background: Initiating hemodialysis via an arteriovenous (AV) access is considered best practice for most patients. Despite the well-recognized advantages of AV access, 80% of US patients start hemodialysis with a catheter. Limited patient knowledge about vascular access, among other factors, may play a role in this high rate. We used iterative stakeholder input to develop novel, mixed media vascular access education materials and evaluated their preliminary acceptability.

Methods: We conducted preliminary focus groups and interviews with key stakeholders to assess patient vascular access understanding and elicit perspectives on existing education materials. We then used stakeholder input to inform initial development and iterative updates to the content and design of an animated video and complementary brochure. Video development (scripting, storyboarding, animation) was guided by an evidence-based framework and two health behavior change models. We assessed acceptability of the completed materials with patients and medical providers/personnel via interviews.

Results: Overall, 105 stakeholders participated in education materials development and review (80 patients/care partners, 25 medical providers/personnel). Preliminary qualitative work included 52 patients/care partners and 16 providers/personnel; video development included 28 patients/care partners and nine providers/personnel. The video script, storyboards, and animation underwent 14, four, and nine stakeholder-guided iterations, respectively. Responsive changes included aesthetic modifications, technical updates, and content additions (e.g., HD circuit, access self-monitoring, enhanced patient testimonials). The final 18-minute video and complementary brochure define vascular access types, describe care processes, outline potential complications, and address common patient concerns. Interviews with 28 patients/care partners and nine providers/personnel from diverse geographic regions revealed preliminary acceptability of, and enthusiasm for, the materials by patients and providers.

Conclusions: In collaboration with key stakeholders, we developed mixed media vascular access education materials that were well-received by patients and providers. Preliminary findings suggest that the materials are promising to improve vascular access understanding among patients.

Keywords: animation; arteriovenous; catheter; dialysis; education; fistula; graft; hemodialysis; mixed methods; stakeholder; vascular access; video.

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Conflict of interest statement

E.H. Chang reports receiving research funding from Lantheus Medical Imaging, and serving on the medical advisory board for the North Carolina chapter of the National Kidney Foundation (NKF). J.E. Flythe reports serving on the editorial board of American Journal of Kidney Diseases (2017–), CJASN (2017–), Kidney Medicine (2019–), and Nephrology Dialysis Transplantation (as the HD theme editor; 2018–), and as an associate editor for Kidney360 (2019–); receiving honoraria from American Renal Associates, American Society of Nephrology, Baxter, Dialysis Clinic Incorporated, Fresenius Medical Care North America, NKF, Renal Ventures, and numerous universities; having consultancy agreements with AstraZeneca and NxStage Medical Advisory Board; serving on the Kidney Disease Improving Global Outcomes Executive Committee (2020–) and Kidney Health Initiative (KHI) Board of Directors (2019–), and as the KHI Patient Preferences Project Chairperson (2019–); and receiving research funding from National Institutes of Health (NIH)/National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), NIH/National Heart, Lung, and Blood Institute, Patient-Centered Outcomes Research Institute, Renal Research Institute (subsidiary of Fresenius Medical Care North America), and Robert Wood Johnson Foundation. A. Hegde reports serving on the research committee for the American Society of Diagnostic and Interventional Nephrology, and having consultancy agreements with Truepill. C. Wilkie reports having consultancy agreements with KHI, the UNC at Chapel Hill, University of Pennsylvania’s HOPE Consortium, and University of Pittsburgh; and having other interests in/relationships with NKF. All remaining authors have nothing to disclose.

Figures

None
Graphical abstract
Figure 1.
Figure 1.
The 7-step process of stakeholder-guided dialysis vascular access education materials development resulted in a final education package comprised of an animated video and complementary brochure. aPatients with advanced CKD and dialysis-dependent ESKD, medical providers, and clinic personnel with experience in vascular access creation and maintenance processes.
Figure 2.
Figure 2.
Stakeholder suggestions guided several modifications to the video script (e.g., content, tone), storyboards (e.g., color, identifying labels), and animation (e.g., procedures) to enhance patient-centeredness. We used patient suggestions from focus groups and interviews to guide patient-centered concept inclusion throughout video development.
Figure 3.
Figure 3.
To help patients navigate their vascular access journeys, the video comprises eight “journey stops” (understanding dialysis, learning about dialysis access, vein mapping, talking about surgery, getting surgery, healing, detours, and starting dialysis). This animated map is coupled with audio aids and appears throughout the video to signal a new “stop,” or a change in the video content. It also serves as an indicator of video progress.
See this image and copyright information in PMC

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