Stakeholder-Guided Development of Dialysis VascularAccess Education MaterialsAdeline Dorough,1 Julia H. Narendra,1 Caroline Wilkie,2 Akhil Hegde,1 Kawan Swain,1 Emily H. Chang,1

Terence Oliver,3 and Jennifer E. Flythe 1,4

AbstractBackground Initiating hemodialysis via an arteriovenous (AV) access is considered best practice for mostpatients. Despite the well-recognized advantages of AV access, 80% of US patients start hemodialysis with acatheter. 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 andevaluated their preliminary acceptability.

Methods We conducted preliminary focus groups and interviews with key stakeholders to assess patientvascular access understanding and elicit perspectives on existing education materials. We then used stakeholderinput to inform initial development and iterative updates to the content and design of an animated video andcomplementary 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 materialswith patients and medical providers/personnel via interviews.

Results Overall, 105 stakeholders participated in education materials development and review (80 patients/carepartners, 25 medical providers/personnel). Preliminary qualitative work included 52 patients/care partners and16 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 complementarybrochure define vascular access types, describe care processes, outline potential complications, and addresscommon patient concerns. Interviews with 28 patients/care partners and nine providers/personnel from diversegeographic regions revealed preliminary acceptability of, and enthusiasm for, the materials by patients andproviders.

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

KIDNEY360 2: 1115–1123, 2021. doi: https://doi.org/10.34067/KID.0002382021

IntroductionInitiating hemodialysis (HD) via an arteriovenous

(AV) access is considered best practice for most

patients. Compared with central venous catheters, AVaccesses are associated with lower risk for infection,cardiovascular events, hospitalizations, and death

Key Points

• Guided by 105 stakeholders, we developed mixed-media vascular access education materials that acknowledgecommon patient concerns.

• Preliminary findings suggest that the education materials are promising to improve vascular access understand-ing among patients.

1University of North Carolina Kidney Center, Division of Nephrology and Hypertension, Department of Medicine, University of NorthCarolina School of Medicine, Chapel Hill, North Carolina2Punta Gorda, Florida3Hussman School of Journalism andMedia, University of North Carolina, Chapel Hill, North Carolina4Cecil G. Sheps Center for Health Services Research, University of North Carolina, Chapel Hill, North Carolina

* Correspondence: Dr. Jennifer E. Flythe, University of North Carolina Kidney Center, 7024 Burnett-Womack CB #7155, Chapel Hill,NC 27599-7155. Email: jflythe@med.unc.edu

www.kidney360.org Vol 2 July, 2021 Copyright # 2021 by the American Society of Nephrology 1115

Original Investigation

(1–3). Despite the well-recognized advantages of AV access,80% of US patients start HD with a catheter (4). Althoughcomplex barriers related to the health system (e.g., insuffi-cient interprovider communication), the patient (e.g., emo-tional distress), and clinical status (e.g., uncertainty abouttime to kidney failure) contribute to this high rate (5–7),limited patient understanding of vascular access may alsoplay a role.Health education interventions have the potential to

enhance understanding, improve self-management, and pos-itively affect health outcomes among individuals with CKD(8). However, we lack standardized approaches to vascularaccess education and related care processes. Currently, sucheducation is combined with programs about kidney failuretreatment options, despite the unique emotional experiencesand clinical complexities associated with vascular access.Although written education resources exist (9–12), their useis variable, and most materials do not directly addresspatient concerns, such as worries about dialysis, needles,and/or disfigurement. As such, there is a need for novelvascular access education approaches that are patient-cen-tered and are delivered at an appropriate health literacylevel. Emerging data suggest that animating health informa-tion can enhance learning and retention across literacy levels(13–16).Accordingly, our objective was to develop mixed media

vascular access education materials that acknowledgepatient emotions (e.g., fear, reluctance) while providingrealistic insight into the care steps and potential complica-tions that may arise during the process of creating a viableAV access. Throughout the project, we used iterative stake-holder input to guide content, imagery, and tone. We thenevaluated the preliminary acceptability of the developedmaterials with stakeholders.

MethodsOverviewFigure 1 depicts project activities. In preliminary focus

groups and interviews, stakeholders identified the lack of

mixed media, patient-centered education materials as abarrier to AV access-based HD initiation. In response, wedeveloped a vascular access education brochure and pro-duced an animated video. We used iterative stakeholderinput to inform material content and design.

The preliminary focus groups, interviews, and draft edu-cation brochure assessment were conducted as part of abroader Geisinger Health quality improvement (QI) pro-ject, aiming to improve rates of AV access–based HD initia-tion (17). These activities were approved by the DukeHealth Institutional Review Board (IRB; Pro00075488).Video development activities were approved by the Uni-versity of North Carolina (UNC) IRB (20-0369). Participantsprovided informed consent.

Preliminary Focus Groups, Interviews, and Draft BrochureWe conducted focus groups and interviews with stake-

holders from Geisinger Health in Danville, Pennsylvania,and UNC Health in Chapel Hill, North Carolina. Care part-ners and patients with nondialysis-dependent advancedCKD (eGFR #20 ml/min per 1.73 m2) and a preference forHD, or HD-dependent kidney failure who initiated HDwithin 1 year, were eligible for focus groups. Intervieweesincluded nephrologists, surgeons, interventionalists, andclinic personnel. Research coordinators recruited patientsand providers using IRB-approved in-person and over-the-telephone recruitment scripts. We used purposive sam-pling to recruit individuals with diverse vascular accesscare experiences and professional roles. Two research coor-dinators (one from each site) with prior experience in quali-tative data collection completed joint training to ensurestandardized use of this project’s moderator and interviewguides (Supplemental Table 1). In addition, the researchcoordinators received training about vascular access from aCKD educator, nephrologist, and two patients with vascu-lar access experience. Both coordinators performed a mockinterview, observed by the principal investigator, beforeresearch data collection. All research interactions wererecorded and professionally transcribed.

Findings were used to draft a preliminary vascularaccess education brochure for the Geisinger Health QI pro-ject (17). During the QI project, we collected user feedback(patient, medical provider/personnel) through semistruc-tured interviews to inform brochure modifications andvideo development.

Video Development and ProductionStrategy and Target PopulationWe used Williams et al.’s (18) adaptation of the Medical

Research Council framework for the development of visu-ally based interventions to guide video development. Theframework has four stages: (1) selecting a theoretic basis,(2) developing a narrative to establish structure, (3) story-boarding and creating imagery, and (4) establishing accept-ability and understanding. We aimed to develop a15-minute video to balance the need to communicatedetailed information without overtaxing the viewer. Ourtarget audience is people planning for HD as a treatmentfor kidney failure and their social supports. Ideally, thematerials would be used in the dialysis preparatory phaseto support pre-emptive AV access creation. However, the

Interviews &Focus Groups

VideoDevelopment

Storyboarding

Iterative stakeholder feedbacka

Final VideoFinal

Brochure

Video ScriptDevelopment

PreliminaryBrochure

Figure 1 | The 7-step process of stakeholder-guided dialysis vascu-lar access education materials development resulted in a finaleducation package comprised of an animated video and comple-mentary brochure. aPatients with advanced CKD and dialysis-dependent ESKD, medical providers, and clinic personnel withexperience in vascular access creation and maintenance processes.

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information is also relevant to individuals who havealready initiated HD.Development ProcessSelecting a Theoretic Basis Our video objectives were

to: (1) improve understanding of vascular access andpotential complications, (2) increase the perceived bene-fits of AV access, (3) reduce uncertainty surrounding vas-cular access care processes, and (4) increase self-efficacyin navigating such processes. To guide video content andformat, we drew upon two health behavior change mod-els derived from social psychologic theories: the healthbelief model and Leventhal et al.’s self-regulationmodel (19–21).Developing a Narrative After selecting the theoretic

bases, we worked with stakeholders to draft and iterativelyrefine the script, using the principles from Hill-Briggs etal.’s (22) five-step methodology for adaptation of patienthealth information to achieve a fifth-grade reading level.Specifically, we used short sentences with active (versuspassive) voice, and defined essential medical terms (e.g.,thrill, bruit, cannulation) (22). We used transitions betweena professional narrator and a patient narrator to retainviewer attention and reinforce important concepts.Storyboarding and Creating Imagery A professional

animator (T.O.) then drafted storyboards. The animatorselected subway imagery to depict the “journey” and visu-ally communicate the nonlinear aspects of associated care.This approach naturally supported the patient recommen-dation of content segmentation through subway stops. Weincorporated photographs of real vascular accesses andultrasound images to supplement animated graphics.Animation and Sound Production The animator then

converted the static storyboard images into flowing videosequences, and a professional audio engineer added thenarrations, background music, and supporting soundeffects to create a cohesive narrative.Acceptability and Understanding We conducted stake-

holder interviews to establish preliminary acceptability andunderstanding of the video content.Stakeholder InputThroughout video development, we gathered stake-

holder input through semistructured interviews. Using thesame recruitment criteria and strategies as for the prelimi-nary data collection, we recruited participants from UNCHealth–affiliated practices. In addition, we relied on apatient database to recruit patients from other health sys-tems who had previously expressed interest in learningabout research opportunities. All interviews were con-ducted by an experienced interviewer using standardizedguides (Supplemental Table 1). The master’s trained inter-viewer has .4 years of experience performing semistruc-tured research interviews with individuals with kidneydisease, their providers, and other relevant stakeholders.During script-related interviews, interviewees read along

with an audio-recorded script; the interviewer sought inputon content, narration style and pacing, and potential visualsupports. The script underwent 14 stakeholder-driven iter-ative revisions. During storyboard and video interviews,interviewees examined storyboards or the video (in part orin whole); the interviewer sought feedback on graphics,sound effects, and flow. Interview questions focused oncontent completeness, technical accuracy, design, and

patient-centeredness. In cases where we made responsivetechnical changes (e.g., thrombectomy animation, needlepositioning) or content additions (e.g., HD circuit, accessself-monitoring), we returned to the recommending stake-holders to affirm the updates. The storyboards and videounderwent four and nine stakeholder-driven iterative revi-sions, respectively.

Alignment of Video and Written MaterialsWe then updated the content and aesthetics of the

preliminary brochure to match the video by: (1) aligningwording and definitions, (2) adding stakeholder-recommended topics, and (3) incorporating video imag-ery. We assessed acceptability of the final materialswith patients/care partners and medical providers/per-sonnel via interviews.

Statistical AnalysisWe used descriptive statistics (count with percentage,

median with interquartile range [IQR] to report participantcharacteristics and materials’ acceptability. We importedpreliminary focus group and interview data transcriptionsinto ATLAS.ti software (version 7, Berlin, Germany), andused directed content analysis to identify barriers to vascu-lar access care (23–25), focusing on education-related gapsfor this presented work. Three researchers used line-by-linecoding to group text according to education-related defi-ciencies (e.g., content, style, reading level). Specifically, thedata were split into smaller units, named on the basis oftheir content, and then grouped according to conceptualsimilarities (25). Through iterative discussion (i.e., triangu-lation), researchers resolved discrepancies and reached con-sensus on the coding scheme.During video development and production, we analyzed

stakeholder interviews to guide revisions to the script,storyboards, and video. Data were compiled in tables orga-nized by video development stage, interviewee type, andmaterial aspect (e.g., content, tone, imagery). Two research-ers independently reviewed and coded the data to identifycontent for potential revision. When considering responsivechanges, we weighted information provided by two ormore interviewees. To ensure validity and credibility, weperformed member checking (i.e., participant validation),where we asked participants to review the education mate-rial changes made in response to their initial interviewsand confirm their accuracy (26). We considered develop-ment steps complete when member checking produced nosuggested revisions. We deemed the materials final whenacceptability testing yielded .90% acceptability and stake-holders suggested no further modifications.

ResultsParticipant CharacteristicsTable 1 depicts project participants. Preliminary qualita-

tive work, conducted to identify deficiencies in existingvascular access education materials, included four focusgroups with 18 patients (nine patients on HD, nine patientswith advanced CKD), six care partners, and 16 individualinterviews with providers/personnel, all from GeisingerHealth and UNC Health. During the Geisinger Health

KIDNEY360 2: 1115–1123, July, 2021 Development of Vascular Access Education Materials, Dorough et al. 1117

Table 1. Participant characteristics

CharacteristicFocus Groups andInterviews (N540)

Draft BrochureReview (N528)

Animated VideoReview (N537)a

Patients and care partners, n 24 28 28Participant type, n (%)

Patient on HD 9 (38) 0 6 (21)Patient with a transplant 0 0 1 (4)Patient with CKD stage 4 5 (21) 23 (82) 6 (21)Patient with CKD stage 5 3 (13) 5 (18) 12 (43)Patient with unknown CKD stage 1 (4) 0 0Care partner 6 (25) 0 3 (11)

Geographic region, n (%)Southeastern United States 11 (46) 0 10 (36)Northeastern United States 13 (54) 28 (100) 8 (29)Midwestern United States 0 0 3 (11)Western United States 0 0 5 (18)Europe 0 0 2 (7)

Age (yr), median (IQR) 65 (60–73) 63 (58–74) 58 (52–77)Female, n (%) 12 (50) 9 15 (54)Race, n (%)

Black 7 (29) 0 12 (43)White 13 (47)Other 17 (71) 28 (100) 3 (11)

Highest level of educationcompleted, n (%)

—

Some high school 2 (8) 2 (7)High school graduate or GED 12 (50) 10 (36)Some college 3 (13) 5 (18)$4 Year college degree 7 (29) 11 (39)

Vascular access type, n (%)Fistula 16 (67) 0 4 (14)Graft 1 (4) 0 4 (14)Catheter 2 (8) 0 3 (11)Fistula and catheterb 1 (4) 0 2 (7)None 3 (13) 28 (100) 15 (54)Missing 1 (4) 0 0

Clinic personnel and medicalproviders, n

16 0 9

Professional role, n (%)Nephrology providerc 3 (19) 4 (44)Surgeon 2 (13) 1 (11)Interventionalist 2 (13) 2 (22)Nurse 8 (50) 2 (22)Nephrology scheduler 1 (6) 0

Geographic region, n (%) —

Southeastern United States 8 (50) 7 (78)Northeastern United States 8 (50) 2 (22)

Age (yr), median (IQR) 42 (38–51) — 46 (37–63)Female, n (%) 11 (69) — 6 (67)Race, n (%)

Black — 1 (11)White 12 (75) 6 (67)Other 4 (25) 2 (22)

Time worked in role (yr),median (IQR)

7 (5–9) — 5 (4–11)

HD, hemodialysis; IQR, interquartile range; GED, General Educational Development.aOf the 37 participants, eight individuals participated in more than one interview.bIndividuals dialyzing via catheter while arteriovenous access was healing or maturing.cNephrology provider includes physicians and advanced practice providers.

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vascular access QI project, 28 people with advanced CKD(median [IQR] eGFR of 21 [17–24] ml/min per 1.73 m2)reviewed the preliminary education brochure.Video development and review participants included 28

patients (six with HD, 18 with advanced CKD, one with atransplant), three care partners, and nine providers/per-sonnel. Among patient participants, the median (IQR) agewas 58 (52–77) years, and 12 (43%) had a high schooldegree or less. Among provider participants, the median(IQR) time serving in their role was 5 (4–11) years.

Education-Related Findings from Preliminary Focus Groupsand InterviewsIn focus groups, patients and care partners reported feel-

ing uncertain navigating vascular access care processes andidentified the need for more comprehensive, patient-centered education materials (Supplemental Table 2). Theyalso emphasized inclusion of patient testimonials toacknowledge and validate emotional experiences (e.g.,reluctance, fear). Patients underscored the importance offrankly describing the variable experiences and potentialcomplications associated with viable AV access creation. Ininterviews, providers affirmed the importance of the afore-mentioned points, reflecting on their own experiences withpatients who were unprepared to participate in shareddecision making or manage common complications due tolimited understanding of vascular access. Patients and pro-viders acknowledged that the breadth of information couldoverwhelm audiences, and therefore suggested segmentingthe material by presenting vascular access care processes as

a multistep “journey.” We used these findings to informdevelopment of a preliminary vascular access educationbrochure.

Initial Testing of Draft Education BrochureOverall, patients responded positively to the preliminary

education brochure’s content, format, and length(Supplemental Table 3). Specifically, the “journey” conceptclearly depicted the steps involved in getting a vascularaccess, and the provided definitions improved understand-ing of terminology. Of the 28 patients who reviewed thebrochure, 27 (96%) would recommend it to other patients.Several patients suggested developing a video to reinforceand expand upon the brochure concepts, citing a desire formore in-depth information that could accommodate differ-ent learning styles.

Stakeholder-Informed Video DevelopmentSupplemental Table 2 contains participant quotations

from all stages of materials development. Table 2 displaysa summary of the stakeholder input and responsive script,storyboard, and video changes. Specifically, input wasobtained from 21 individual participants (12 patients, nineproviders) across 47 unique interactions. Figure 2 providesexamples of stakeholder-informed, patient-centered con-cepts applied during video development.Script DevelopmentIn early script interviews, stakeholders affirmed the

importance of the included concepts, but suggested simpli-fying technical descriptions and elaborating on practical

Table 2. Stakeholder feedback on the video and responsive changes

Script and Storyboarding Feedback Responsive Change(s) Video Feedback

PatientsHelpful information, but some details

unnecessaryShortened technical descriptions Good overview that stimulates

questions, equips patients for careteam conversations

Patient-narrated portion is essential,well-timed, and relatable

Included patient’s voice and imagethroughout video

Patient story is influential, clarifiesinformation, and eases fears/concerns

“Journey” concept is intuitive;subway imagery is clear; detoursimply different experiences

Added more examples of potentialdetours to highlight variability inindividual experiences

Steps to get an access are easy tofollow; transparent content preparesindividuals by providing a completeand truthful picture

Add more information about day-to-day life with a vascular access

Added patient-suggested daily activities,questions, and worries

Examples contextualize the information

Cartoons are effective at impartingcomplex information, but shouldbe paired with real imagery

Added vascular access photographs andultrasound images

Animation complements the script andis easy to understand; vibrant colors,pace, and tempo facilitate interest

ProvidersContent is comprehensive, but ranges

from too technical to too nonspecificRemoved excess detail (e.g., term “blood

flow rate”); updated overly simplifiedconcepts (e.g., added detail aboutaccess self-assessments)

Addresses common concerns and keytopics at an appropriate healthliteracy level; relevant for bothpatients with advanced CKD andthose who are HD dependent

Amount of information is difficult todigest, but topics are critical toinclude

Reordered information; summarized keyconcepts in patient-narrated portions

Good flow; summaries support learningand bring humanity to technicaldetail

Provide context to make animationclearer

Added orienting imagery and labels Animations are accurate and supportlearning

KIDNEY360 2: 1115–1123, July, 2021 Development of Vascular Access Education Materials, Dorough et al. 1119

aspects (e.g., influence on the patient’s life, timeline).Patients and providers recommended adding informationabout vascular access maintenance procedures (e.g., angio-plasty, catheter thrombolysis) and providing more detailabout HD (e.g., cannulation, dialysis circuit). In general,interviewees appreciated repeated information to facilitateunderstanding, but a few considered the redundancy a dis-traction. In response, we shortened or spaced out repeatdescriptions. Related, we consolidated the interspersedpatient testimonials into summary sections at each“journey stop.” In near-final script interviews, stakeholdersreported these changes effectively signaled content transi-tions, reinforced key information, and, most importantly,infused the script with humanity and “real-life” experien-ces. In addition, stakeholder input guided word changes topromote technical accuracy and an appropriate health liter-acy level (e.g., incorporating and defining terms such as“vessel mapping” and “maturing”). The script was deemed“final” upon interviewee approval of modifications duringmember checking.

Storyboard and Video DevelopmentIn storyboard and early video interviews, stakeholders

suggested modifying the color palette to reflect morediverse skin tones, enlarging font size, adding real imagery,and using on-screen text to signal key terms. Many patientsexpressed concerns about body disfigurement. One womansaid, “… I’m so concerned that my arm is gonna look likesome incredible hulk.” In response, we added photographsof vascular accesses to showcase their variability in appear-ance. Patients preferred that procedures remain animatedto avoid unnecessarily detailed depictions. Intervieweesalso suggested incorporating a “vascular access journeymap” throughout the video to illustrate progress anddepict the nonlinear nature of the experience (Figure 3).

Final Video ProductionIn near-final video interviews, stakeholders reported sat-

isfaction with animation updates, citing improvements inthe depiction of content often perceived as dull and com-plex. Only minor refinements were suggested to supportease of viewership. For example, a few perceived the jour-ney stops as “running together.” In response, we length-ened transitions and added audio indicators to cue thebeginning of each “journey stop.” After these edits, thefinal video was 18 minutes long, which is 3 minutes morethan the target duration. Despite the length, patients foundthe content neither burdensome nor boring, and describedthe video as empowering because of its comprehensive andrealistic nature. In general, stakeholders found that the ani-mation effectively imparted complex information, and thatthe two narrators, background music, and sound effectsheld their attention. One patient on HD commented, “Itwas visually interesting, and I wasn’t watching the clockthinking that it was taking forever,” and a patient withadvanced CKD said, “…The video gave me lots of infor-mation that I can just sit with and ask questions later.”

In particular, the patient narrator’s story resonated acrossstakeholder types. A patient on HD commented, “[She]will reduce anxiety and make things clearer. You alwayscan identify with someone who has been through whatyou’re going to go through.” This idea was evidencedwhen an individual who was just beginning their vascularaccess journey said, “I felt less tense and less worriedbecause of her…” All patient and provider participants

DIALYSISACCESSJOURNEY

UnderstandingDialysis

StartingDialysis

Learning aboutDialysis AccessVein

Mapping

Talking aboutSurgery

GettingSurgery

Detours

Healing

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 ani-mated map is coupled with audio aids and appears throughout thevideo to signal a new “stop,” or a change in the video content. Italso serves as an indicator of video progress.

PatientSuggestion

ScriptExcerpt(s)

Video

Share a real patient’s story

Hi, I’m Caroline and I’m ahemodialysis patient. I’ve

been on dialysis for 10 yearsand I’ve had few types of

dialysis access.

Directly address needle usage

Two needles are used toconnect fistulas and grafts tothe dialysis machine tubes.

Explain why some accessesneed extra procedures

•At least 1 out of 3 fistulas needs extra help to mature.

•Doctors may need to make it [fistula] bigger to help blood flow better.

Show real photographs ofdifferent access types

Sometimes, [fistulas and grafts]look lumpy or bumpy under yourskin, but not always. Everyone’s

looks different.

Show how hemodialysis works

The machine cleans yourblood a little at a time, removesextra fluid, and then sends theclean blood back your body.

Figure 2. | Stakeholder suggestions guided several modifications to the video script (e.g., content, tone), storyboards (e.g., color, identi-fying labels), and animation (e.g., procedures) to enhance patient-centeredness. We used patient suggestions from focus groups and inter-views to guide patient-centered concept inclusion throughout video development.

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indicated they would recommend the video to their peersand patients, respectively.

Understanding and Acceptability ofPostproduction MaterialsThe final education package (go.unc.edu/dialysisaccess;

Supplemental Material) was evaluated by 25 patients, threecare partners, and nine medical providers. Participantswere from diverse geographic regions, and 13 (77%) of thepatients had advanced CKD—the video target audience.Participants felt the aesthetics and content paralleled oneanother, effectively reinforcing important concepts (e.g.,vascular access journey, terms), while providing helpful,medium-specific individualizations (e.g., space to write-inmedical appointments, animated technical procedures).Patients called attention to the accessibility of mixed media,noting “… it’s great because you can watch the video andthen take the brochure home and really think about it… ,”and “… it gives you a chance to keep thinking about it[and] share it with family.” Similarly, a provider com-mented, “The repeated visuals help [the information] stickwith you. Even if a patient is overwhelmed and teary eyedand mad, [they] can remember these pictures so [they]know how to ask questions.” All 37 (100%) intervieweesendorsed use of the materials in practice, exceeding the90% acceptability threshold.

DiscussionThis article describes the stakeholder-guided process of

developing a patient-centered vascular access educationvideo and complementary brochure. The resultant materi-als use subway imagery to depict the “journey” of navigat-ing vascular access care, include patient testimonials toacknowledge common emotions and concerns, and sum-marize key health information. Preliminary findings sug-gest the materials are acceptable to patients and providers,and have the potential to improve understanding of vascu-lar access and associated care. This work highlights theimportance of creating mixed media health education toolsthat are infused with patient experiences to enhance relat-ability and appeal.A systematic review of qualitative studies found that

patients often experience emotional vulnerability, unpre-paredness, and loss of control during vascular access plan-ning (27). Our focus group findings supported these data,with stakeholders reiterating the need for education thatdirectly acknowledges patient anxiety, fear, and uncer-tainty. To do so, we incorporated a patient narrator who iscurrently receiving maintenance HD. In the video, she tellsher own vascular access story, describing her reluctance tostart the journey, fears of needles and pain, and medicalcomplications. The patient’s story resonated with viewers,who described “Caroline” as the distinguishing video ele-ment, grounding the health information in an authenticvoice. Patients found Caroline’s story comforting becausethey identified with her emotions and challenges. Suchreactions are consistent with peer mentorship literaturethat highlights the role of shared patient experiences in nor-malizing emotions, promoting credibility, enhancing trust,and providing hope (28,29). The patient narrator also

reiterated critical information relayed by the professionalnarrator, aiming to increase viewer understanding andretention. Stakeholders felt this approach was particularlyimportant given the information complexity and volume.However, the aforementioned elements would likely fall

short without accommodating different learning styles andliteracy levels. Limited health literacy affects more than aquarter of individuals with CKD and is associated withpoorer health outcomes (e.g., more rapid kidney functiondecline, higher mortality) (30–34). Factors related to limitedhealth literacy—including reduced self-management capac-ity, challenges navigating care processes, and difficultyeffectively communicating with providers—may, in part,mediate these observed associations (35). Data suggest thatanimation can help overcome some limited health literacychallenges by improving comprehension and recall (13–15).For example, audiences with limited health literacy mayhave difficulty developing mental representations of staticinformation (36,37). Incorporating dynamic animation andaudio narration in colorectal education materials wasshown to eliminate recall differences between audienceswith lower and higher health literacy (13). Moreover, ananimated video on kidney allocation provides precedentfor using this medium to improve understanding and deci-sional self-efficacy in CKD populations (38). Therefore, wecoupled static (brochure) and dynamic (video) media toenhance viewer information processing, emphasize keypoints, and improve recallability of vascular accessinformation.Strengths of our project include: (1) use of a validated

framework for the development of visually based interven-tions and two health behavior change models to guidecontent and development; (2) reliance on a five-step meth-odology for lowering material reading level; (3) incorpora-tion of both professional and patient narration; (4) guidanceby diverse stakeholders; and (5) input from 80 patients/care partners, including perspectives from 54 individualswith advanced CKD (i.e., the target audience). We acknowl-edge project limitations. First, we only included partici-pants who spoke English. Although we have translated thematerials into Spanish, these require cultural validationand possibly cultural adaptation. Second, the video lengthcould deter viewing. To address this potential limitation,we generated time-stamped video chapters within the18-minute video and eight individual “journey-stop” videoclips to facilitate segmented viewing. Third, we reportedsolely on the material development process. Future studiesshould assess the materials’ effectiveness at increasingknowledge and decisional self-efficacy, and improving clin-ical outcomes. Finally, no education product is ever trulyfinished. Although we used formal member checking andacceptability testing to guide our decision to end materialediting, we acknowledge that future revisions may bewarranted.In conclusion, we present a vascular access education

package comprising an animated video and complemen-tary brochure. Together, these materials present key infor-mation about vascular access, care steps, and commonpatient concerns. Although future research is needed toevaluate their effectiveness, our data highlight the materi-als’ potential to improve patient understanding and experi-ences as they navigate dialysis vascular access care.

KIDNEY360 2: 1115–1123, July, 2021 Development of Vascular Access Education Materials, Dorough et al. 1121

DisclosuresE.H. Chang reports receiving research funding from Lantheus

Medical Imaging, and serving on the medical advisory board forthe North Carolina chapter of the National Kidney Foundation(NKF). J.E. Flythe reports serving on the editorial board of Ameri-can Journal of Kidney Diseases (2017–), CJASN (2017–), Kidney Medi-cine (2019–), and Nephrology Dialysis Transplantation (as the HDtheme editor; 2018–), and as an associate editor for Kidney360(2019–); receiving honoraria from American Renal Associates,American Society of Nephrology, Baxter, Dialysis Clinic Incorpo-rated, Fresenius Medical Care North America, NKF, Renal Ven-tures, and numerous universities; having consultancy agreementswith AstraZeneca and NxStage Medical Advisory Board; servingon the Kidney Disease Improving Global Outcomes ExecutiveCommittee (2020–) and Kidney Health Initiative (KHI) Board ofDirectors (2019–), and as the KHI Patient Preferences Project Chair-person (2019–); and receiving research funding from NationalInstitutes of Health (NIH)/National Institute of Diabetes andDigestive and Kidney Diseases (NIDDK), NIH/National Heart,Lung, and Blood Institute, Patient-Centered Outcomes ResearchInstitute, Renal Research Institute (subsidiary of Fresenius MedicalCare North America), and Robert Wood Johnson Foundation. A.Hegde reports serving on the research committee for the AmericanSociety of Diagnostic and Interventional Nephrology, and havingconsultancy agreements with Truepill. C. Wilkie reports havingconsultancy agreements with KHI, the UNC at Chapel Hill, Uni-versity of Pennsylvania’s HOPE Consortium, and University ofPittsburgh; and having other interests in/relationships with NKF.All remaining authors have nothing to disclose.

FundingThis work was supported by NIDDK grant R21DK116115, and

Renal Research Institute (RRI; a subsidiary of Fresenius KidneyCare North America) unrestricted, investigator-initiated researchgrant 20-0149. J.E. Flythe is supported by NIDDK grantK23DK109401.

AcknowledgmentsThe authors express gratitude to our Geisinger collaborators,

Dr. Jamie Green and Ms. Christina Yule, for their work develop-ing and implementing the QI project from which these edu-cation materials stemmed. The authors also thank Drs. SuryaManivannan and Shannon Murphy for their assistance withqualitative analyses of the preliminary focus groups and inter-views, Ms. Linda York for her support with participant re-cruitment, and the numerous stakeholders who shared theirexperiences and feedback. Finally, we thank the patients whopermitted inclusion of photographs of their dialysis accessesand ultrasound images.The results presented in this article have not been published

previously in whole or part, except in abstract form.RRI played no role in study design; collection, analysis, and

interpretation of data; writing the report; or in the decision tosubmit the report for publication.

Author ContributionsAll authors were responsible for visualization; A. Dorough and

J.E. Flythe wrote the original draft; A. Dorough, J.E. Flythe, andJ.H. Narendra were responsible for formal analysis; A. Dorough,J.E. Flythe, and T. Oliver conceptualized the study; A. Doroughand J.H. Narendra were responsible for data curation and projectadministration; J.E. Flythe was responsible for funding acquisitionand provided supervision; J.E. Flythe and T. Oliver were

responsible for methodology and resources; T. Oliver was respon-sible for software; and all authors were responsible for investiga-tion, and reviewed and edited the manuscript.

Supplemental MaterialThis article contains the following supplemental material online at

http://kidney360.asnjournals.org/lookup/suppl/doi:10.10.34067/KID.0002382021/-/DCSupplemental.

Supplemental Table 1. Representative interview guide questions.Supplemental Table 2. Stakeholder quotations.Supplemental Table 3. Stakeholder-informed vascular access edu-

cational brochure development.Supplemental Material. Education Package.

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Received: April 6, 2021. Accepted: April 29, 2021

KIDNEY360 2: 1115–1123, July, 2021 Development of Vascular Access Education Materials, Dorough et al. 1123

Dorough, et al. Supplement 1

SUPPLEMENTAL MATERIAL

Table of Contents

Supplemental Table S1. Representative interview guide questions. .................................................................... 2

Supplemental Table S2. Stakeholder quotations. ................................................................................................. 3

Supplemental Table S3. Stakeholder-informed vascular access educational brochure development. ................ 6

Education Package ............................................................................................................................................... 7

Dorough, et al. Supplement 2

Supplemental Table S1. Representative interview guide questions. Focus Groups & Interviews Patient and Care Partner Questions

Q. What was the first thing you learned about vascular access? PROBE: Can you describe your reaction?

Q. Please tell me about the education on vascular access, if any, that you received. PROBE: Do you feel like you have/had an adequate understanding of the types of vascular access and the process for having a vascular access placed? Why or why not?

Q. (For advanced CKD patients) Do you have any fears or worries about vascular access? PROBE: Do you feel supported? If yes, how? If no, how could your support be improved?

Q. (For dialysis patients) Knowing what you know now, what information do you wish you had when you started the vascular access process?

Clinic Personnel and Medical Provider Questions

Q. How do you typically explain vascular access to patients? PROBE: What is the format (e.g., in-person, online, pamphlets)?

Q. What are the main patient barriers to creation of AV access prior to HD start?

Q. When do you see patients having the most challenges in the AV access creation process? Draft Brochure Review Patient Questions

Q. What, if anything, did you learn from the brochure? PROBE: What information is missing, if anything?

Q. What did you like most about the brochure?

Q. What did you like least about the brochure? Script, Storyboarding, and Animation Interviews Patient Questions

Q. Does this accurately reflect your vascular access experience? PROBE: Are the “journey” stops comprehensive?

Q. How easy was it to understand the descriptions of vascular access types, appointments, etc.? PROBE: Is anything missing? Inaccurate? Misplaced? Unclear?

Q. How clear is the subway imagery in depicting a “journey”? PROBE: What changes could make the journey clearer? PROBE: What stops of the journey should include real images (vs. animation)

Q. What are your thoughts on the patient testimonial? PROBE: Is it clear that the individual is a real patient sharing a real story? PROBE: How did inclusion of this testimonial impact your thoughts on the video?

Q. How do you feel about the video aesthetics (e.g., color, font) and sounds (e.g., narration, background music, sound effects?)

Clinic Personnel and Medical Provider Questions

Q. Does this content cover the information that your patients commonly ask about? PROBE: What else do you normally share that we did not include?

Q. What misconceptions/confusion have you encountered discussing this information?

Q. What technical inaccuracies exist, if any? PROBE: What language needs to be modified? Definitions? Descriptions? PROBE: What imagery/animation updates are needed to correctly depict the content?

Final Materials Review Patient Questions

Q. How do the video and brochure work together? PROBE: Do each make sense independently of one another? If yes, why? If no, why not?

Q. When would you recommend other patients receive these materials? Why?

Q. What is the value in these educational materials? PROBE: How might these [have] influence[d] your vascular access journey?

Clinic Personnel and Medical Provider Questions

Q. How do the video and brochure work together? PROBE: Do each make sense independently of one another? If yes, why? If no, why not?

Q. How could you envision using the materials clinically? PROBE: How might your patients utilize these materials, if at all?

Dorough, et al. Supplement 3

Supplemental Table S2. Stakeholder quotations. Development phase Stakeholder quotation Preliminary focus groups and interviews - “I didn't understand exactly what they were talking about. If they could really explain [vascular

access], just sit down with a patient and say this is what's going to be, this is how it's going to happen, I think that would help a whole lot...yeah, in normal language.” (Patient)

- “I was scared. No one ever acknowledged that. They just kept talking like it was everyday stuff.” (Patient)

- “If I could have gotten more information on what to expect after the fistula was done. Maybe that would have helped me feel a little more reassured.” (Patient)17

- “I took the Kidney Smart Class, and they did touch on [AV access], but not enough to really let you know what you were getting into.” (Patient)17

- “I need pictures. It is hard to think about what [vascular access] might be like without real live pictures.” (Patient)

- “I am a tech guy. Show me the procedure. What is actually going to happen?” (Patient) - “See his [fistula] was in, but his kidneys went that fast. There wasn’t time for it to mature, and he

had to get the catheter. There was no head’s up that something like that might happen... Things happen. There’s going to be hiccups along the way- having the conversation about things like that is good. But you don’t hear that.” (Care Partner)17

- “A large majority of the time, [patients] have no idea why they're here. They have no idea what a fistula is. They have no idea what a graft is." (Nurse)17

- “I feel like when patients are in the clinic…, they don’t listen, they’re overwhelmed. Most of what we say [about vascular access] is not retained.” (Nephrologist)

- “I think if we had more communication tools [about vascular access]. Maybe better communication, more time spent just to cover the access. When we do [kidney failure] education, we talk about so many different things that perhaps we need to do a session just about access.” (Nephrologist)

- “Patients have misconceptions about the way fistulas look and about pain with needles for dialysis. This hinders them getting an access placed.” (Nephrologist)

- “Patients often come to the surgery appointment not understanding vascular access, and we have to spend time explaining the access types and process to patients. It feels like the patients are learning the information for the first time.” (Surgeon)

Script - "It’s enough information but not too much.” (Patient)

- “Even if I never knew about dialysis at all, this would have been a good introduction and very helpful.” (Patient)

- “I like that Caroline is honest about being scared. Emotions are good.” (Patient) - “I was waiting for the needle talk. Important to reassure people that you get used to it. It is scary

at first.” (Patient) - “I am not kidding you. It is exactly what I went through. I didn’t have a second fistula, but the first

one was all those appointments.” (Patient) - “When you mention [a fistula or graft] might need a secondary intervention, also add a sentence

that they fail to mature or graft gets infected or clots and it’s not usable.” (Surgeon) - “Lots of patients think the [angioplasty] balloon is still in their arm, like it’s inserted and remains.

[There is] So much confusion around that, especially if they have multiple. Be clear that it gets removed.” (Interventionalist)

- “Telling patients to know if the thrill is there or not is key to success...I tell patients to check for this because it’s high yield and easy to determine on their own.” (Interventionalist)

- “It’s good to have reference of [post-op] movement like buttoning a shirt because some people just hold their arms against their bodies and get frozen shoulder.” (Nurse)

Storyboards - "Animate the process of a graft or fistula, when the vessels are connected and then show

needles as described in the script. It looks odd as a still image.” (Patient) - “Could [the patient] wear something less formal? She looks so professional.” (Patient) - “Patients need more context. Having just an arm that’s a green color...they are gonna spend 5

seconds orienting themselves and miss the access description. Orient them in advance by using a whole human body, and then do a box around the part of the body, and then zoom all the way in. It needs more labels too.” (Interventionalist)

Dorough, et al. Supplement 4

- “Is the [fistula] vein braided? It’s good to show it’s bigger and matured but should just be a chunkier vein of same the diameter all the way up arm and make it purple. The needle orientation is fine.” (Interventionalist)

- “The subway [imagery] will work because you have stops and starts. Even if rural folks don’t get the transportation mode, the idea of stops and starts is clear. It makes it clear it’s a journey and that’s what matters.” (Nurse)

Video - “I wish I had this information when I was going through my journey! I pulled some things up on

the internet about it, but this would have been more helpful.” (Patient) - “There was enough to keep your attention with the animation and things moving around. You

won’t be an expert, but you’ll know enough to start a dialogue with a surgeon or nephrologist and ask good questions.” (Patient)

- “It flowed well. It even talked about how some people have to have a catheter the whole time on dialysis. It covered enough of the different aspects that people will have a fairly good feel about what’s going on.” (Patient)

- [The video] made me understand the situation. How they gonna do it. I really learned a lot from that and I’m glad I came [to watch]. [The patient narrator] is pretty much laying it all out for you. She let me know that the fistula is better, so that’s what I would really want to try.” (Patient)

- “I really like the guitar and teeth-brushing component. We want [patients] to use their arm for most things [after surgery]. (Surgeon)

- “I liked the multiple pictures of fistulas and grafts so [patients] know it could look 100 different ways and it’s still okay or normal.” (Surgeon)

- “I think you covered some things I didn’t even think about but were useful...Using the same images over and over to reinforce is good. The length is the hardest part about it – I mean it’s a lot of information. You don’t want to rush it. I think the pace was good and I didn’t get bored. I think patients would be less likely to be bored than me.” (Nephrologist)

- “[The skin tones] Appeared to be hues to imply different races...you could extrapolate that some people looked black or white or neither or both. I think that’s the right thing. You want to sort of be able to see enough of yourself, but not everyone has to be yourself.” (Nephrologist)

- “...you have a relatable-patient narrator and the animation...using that compared to a medical diagram is more relatable for the everyday person.” (Nurse)

Final materialsa - “The journey is beautifully laid out. I think it’s simple and presents complex information. I love

the script.” (Patient) - “[The education] provides a very good perspective on what my choices are and why. And if I

make a certain choice, will I be able to live with it? The pain and carrying heavy objects and things like that. It’s a very practical summary.” (Patient)

- “They work together well. I think it’s a very good program. It deserves an Emmy or something in that category.” (Patient)

- “I think it’s great because you can watch the video and then take the brochure home and really think about it“I think [the education package is] a good combination because everyone learns differently. Some are more visual, and some want to read up on things.” (Patient)

- “I think these are perfect words for [kidney patients].” (Patient) - “The way [the video] phrased everything and went into details...and then seeing it on the

screen, ya know, I thought ‘they did exactly that thing to me!’ [It] explained everything really well, and the words were good.” (Patient)

- “I think the glossary is helpful because so many people forget words. It will be helpful for people to look back and see what they have. Just a nice way to remember.” (Patient)

- “Nothing was really missing. I think [the education] covered everything.” (Patient) - “[The information] was very clearly presented and [the access types] were crystalized in

my mind. Overall, I was pleased with the video.” (Patient) - “I love the graphics through [these] things! Not too simplified. It is a perfect

representation of what’s supposed to be happening.” (Nephrologist) - “I know I’m losing patients no matter how hard I try because it’s so hard to explain...To

show this [video] would be so nice...it really captures it well. The patient’s experience with [the education] is always helpful.” (Interventionalist)

- “It was great. Just enough of a description without confusing people.” (Interventionalist) - “You have found the balance of a very complex disease process and a very emotional

disease process.” (Nurse)

Dorough, et al. Supplement 5

- “This is very ready for primetime. We’ve never had something like this.” (Nurse) - “It doesn’t talk down, and it’s specific. My population will understand every word of this. I

have no concerns with that.” (Nurse) a Bolded quotations are representative of interview content used to support the conclusion that further video and brochure revisions were unnecessary. Such quotations, along with an acceptability threshold of >90% and absence of suggested content changes during member-checking, were used to deem the education materials “final.”

Dorough, et al. Supplement 6

Supplemental Table S3. Stakeholder-informed vascular access educational brochure development. Content recommendations

(Pre-development) Suggested modifications

(Draft brochure) Alignment with video

(Final brochure) • Incorporate patient testimonials --- • Added patient quotes, questions

• Named and validated patient emotions (e.g., fear, confusion)

• Added imagery of diverse people

• Keep language simple without diluting content or omitting detail

• Clarify vague health terms (e.g., tests, tubes, vessels)

• Aligned language across materials

• Define key terms and ideas • Shorten definitions (e.g., vascular) • Add terms (e.g., bruit, cannulation)

• Included visual aids next to each glossary term (video still images)

• Added information on how to protect and care for access

• Depict the vascular access experience as a multi-step journey

• Simplify stop names, descriptions • Describe the variability in individual

access journeys • Explain potential complications

• Updated roadmap imagery to subway map imagery

• Stated that everyone’s journey is different

• Describe when and why a vascular access is needed

• Add information about hemodialysis • Included hemodialysis description and imagery

Focus group participants identified gaps in existing vascular access educational materials and made recommendations for new resources (column 1). In response, we developed a preliminary vascular access educational brochure for use in a QI project at Geisinger Health. QI project participants suggested modifications to the brochure to improve clarity and transparency (column 2). The final brochure reflects incorporation of suggested modifications in addition to changes which align the brochure with the aesthetics and content of the final video (column 3).

Dorough, et al. Supplement 7

Education Package Video and brochure available for review and download at go.unc.edu/dialysisaccess Image 1. Video Title Screen

Image 2. Brochure cover

Dorough, et al. Supplement 1

SUPPLEMENTAL MATERIAL

Table of Contents

Supplemental Table S1. Representative interview guide questions. .................................................................... 2

Supplemental Table S2. Stakeholder quotations. ................................................................................................. 3

Supplemental Table S3. Stakeholder-informed vascular access educational brochure development. ................ 6

Education Package ............................................................................................................................................... 7

Dorough, et al. Supplement 2

Supplemental Table S1. Representative interview guide questions. Focus Groups & Interviews Patient and Care Partner Questions

Q. What was the first thing you learned about vascular access? PROBE: Can you describe your reaction?

Q. Please tell me about the education on vascular access, if any, that you received. PROBE: Do you feel like you have/had an adequate understanding of the types of vascular access and the process for having a vascular access placed? Why or why not?

Q. (For advanced CKD patients) Do you have any fears or worries about vascular access? PROBE: Do you feel supported? If yes, how? If no, how could your support be improved?

Q. (For dialysis patients) Knowing what you know now, what information do you wish you had when you started the vascular access process?

Clinic Personnel and Medical Provider Questions

Q. How do you typically explain vascular access to patients? PROBE: What is the format (e.g., in-person, online, pamphlets)?

Q. What are the main patient barriers to creation of AV access prior to HD start?

Q. When do you see patients having the most challenges in the AV access creation process? Draft Brochure Review Patient Questions

Q. What, if anything, did you learn from the brochure? PROBE: What information is missing, if anything?

Q. What did you like most about the brochure?

Q. What did you like least about the brochure? Script, Storyboarding, and Animation Interviews Patient Questions

Q. Does this accurately reflect your vascular access experience? PROBE: Are the “journey” stops comprehensive?

Q. How easy was it to understand the descriptions of vascular access types, appointments, etc.? PROBE: Is anything missing? Inaccurate? Misplaced? Unclear?

Q. How clear is the subway imagery in depicting a “journey”? PROBE: What changes could make the journey clearer? PROBE: What stops of the journey should include real images (vs. animation)

Q. What are your thoughts on the patient testimonial? PROBE: Is it clear that the individual is a real patient sharing a real story? PROBE: How did inclusion of this testimonial impact your thoughts on the video?

Q. How do you feel about the video aesthetics (e.g., color, font) and sounds (e.g., narration, background music, sound effects?)

Clinic Personnel and Medical Provider Questions

Q. Does this content cover the information that your patients commonly ask about? PROBE: What else do you normally share that we did not include?

Q. What misconceptions/confusion have you encountered discussing this information?

Q. What technical inaccuracies exist, if any? PROBE: What language needs to be modified? Definitions? Descriptions? PROBE: What imagery/animation updates are needed to correctly depict the content?

Final Materials Review Patient Questions

Q. How do the video and brochure work together? PROBE: Do each make sense independently of one another? If yes, why? If no, why not?

Q. When would you recommend other patients receive these materials? Why?

Q. What is the value in these educational materials? PROBE: How might these [have] influence[d] your vascular access journey?

Clinic Personnel and Medical Provider Questions

Q. How do the video and brochure work together? PROBE: Do each make sense independently of one another? If yes, why? If no, why not?

Q. How could you envision using the materials clinically? PROBE: How might your patients utilize these materials, if at all?

Dorough, et al. Supplement 3

Supplemental Table S2. Stakeholder quotations. Development phase Stakeholder quotation Preliminary focus groups and interviews - “I didn't understand exactly what they were talking about. If they could really explain [vascular

access], just sit down with a patient and say this is what's going to be, this is how it's going to happen, I think that would help a whole lot...yeah, in normal language.” (Patient)

- “I was scared. No one ever acknowledged that. They just kept talking like it was everyday stuff.” (Patient)

- “If I could have gotten more information on what to expect after the fistula was done. Maybe that would have helped me feel a little more reassured.” (Patient)17

- “I took the Kidney Smart Class, and they did touch on [AV access], but not enough to really let you know what you were getting into.” (Patient)17

- “I need pictures. It is hard to think about what [vascular access] might be like without real live pictures.” (Patient)

- “I am a tech guy. Show me the procedure. What is actually going to happen?” (Patient) - “See his [fistula] was in, but his kidneys went that fast. There wasn’t time for it to mature, and he

had to get the catheter. There was no head’s up that something like that might happen... Things happen. There’s going to be hiccups along the way- having the conversation about things like that is good. But you don’t hear that.” (Care Partner)17

- “A large majority of the time, [patients] have no idea why they're here. They have no idea what a fistula is. They have no idea what a graft is." (Nurse)17

- “I feel like when patients are in the clinic…, they don’t listen, they’re overwhelmed. Most of what we say [about vascular access] is not retained.” (Nephrologist)

- “I think if we had more communication tools [about vascular access]. Maybe better communication, more time spent just to cover the access. When we do [kidney failure] education, we talk about so many different things that perhaps we need to do a session just about access.” (Nephrologist)

- “Patients have misconceptions about the way fistulas look and about pain with needles for dialysis. This hinders them getting an access placed.” (Nephrologist)

- “Patients often come to the surgery appointment not understanding vascular access, and we have to spend time explaining the access types and process to patients. It feels like the patients are learning the information for the first time.” (Surgeon)

Script - "It’s enough information but not too much.” (Patient)

- “Even if I never knew about dialysis at all, this would have been a good introduction and very helpful.” (Patient)

- “I like that Caroline is honest about being scared. Emotions are good.” (Patient) - “I was waiting for the needle talk. Important to reassure people that you get used to it. It is scary

at first.” (Patient) - “I am not kidding you. It is exactly what I went through. I didn’t have a second fistula, but the first

one was all those appointments.” (Patient) - “When you mention [a fistula or graft] might need a secondary intervention, also add a sentence

that they fail to mature or graft gets infected or clots and it’s not usable.” (Surgeon) - “Lots of patients think the [angioplasty] balloon is still in their arm, like it’s inserted and remains.

[There is] So much confusion around that, especially if they have multiple. Be clear that it gets removed.” (Interventionalist)

- “Telling patients to know if the thrill is there or not is key to success...I tell patients to check for this because it’s high yield and easy to determine on their own.” (Interventionalist)

- “It’s good to have reference of [post-op] movement like buttoning a shirt because some people just hold their arms against their bodies and get frozen shoulder.” (Nurse)

Storyboards - "Animate the process of a graft or fistula, when the vessels are connected and then show

needles as described in the script. It looks odd as a still image.” (Patient) - “Could [the patient] wear something less formal? She looks so professional.” (Patient) - “Patients need more context. Having just an arm that’s a green color...they are gonna spend 5

seconds orienting themselves and miss the access description. Orient them in advance by using a whole human body, and then do a box around the part of the body, and then zoom all the way in. It needs more labels too.” (Interventionalist)

Dorough, et al. Supplement 4

- “Is the [fistula] vein braided? It’s good to show it’s bigger and matured but should just be a chunkier vein of same the diameter all the way up arm and make it purple. The needle orientation is fine.” (Interventionalist)

- “The subway [imagery] will work because you have stops and starts. Even if rural folks don’t get the transportation mode, the idea of stops and starts is clear. It makes it clear it’s a journey and that’s what matters.” (Nurse)

Video - “I wish I had this information when I was going through my journey! I pulled some things up on

the internet about it, but this would have been more helpful.” (Patient) - “There was enough to keep your attention with the animation and things moving around. You

won’t be an expert, but you’ll know enough to start a dialogue with a surgeon or nephrologist and ask good questions.” (Patient)

- “It flowed well. It even talked about how some people have to have a catheter the whole time on dialysis. It covered enough of the different aspects that people will have a fairly good feel about what’s going on.” (Patient)

- [The video] made me understand the situation. How they gonna do it. I really learned a lot from that and I’m glad I came [to watch]. [The patient narrator] is pretty much laying it all out for you. She let me know that the fistula is better, so that’s what I would really want to try.” (Patient)

- “I really like the guitar and teeth-brushing component. We want [patients] to use their arm for most things [after surgery]. (Surgeon)

- “I liked the multiple pictures of fistulas and grafts so [patients] know it could look 100 different ways and it’s still okay or normal.” (Surgeon)

- “I think you covered some things I didn’t even think about but were useful...Using the same images over and over to reinforce is good. The length is the hardest part about it – I mean it’s a lot of information. You don’t want to rush it. I think the pace was good and I didn’t get bored. I think patients would be less likely to be bored than me.” (Nephrologist)

- “[The skin tones] Appeared to be hues to imply different races...you could extrapolate that some people looked black or white or neither or both. I think that’s the right thing. You want to sort of be able to see enough of yourself, but not everyone has to be yourself.” (Nephrologist)

- “...you have a relatable-patient narrator and the animation...using that compared to a medical diagram is more relatable for the everyday person.” (Nurse)

Final materialsa - “The journey is beautifully laid out. I think it’s simple and presents complex information. I love

the script.” (Patient) - “[The education] provides a very good perspective on what my choices are and why. And if I

make a certain choice, will I be able to live with it? The pain and carrying heavy objects and things like that. It’s a very practical summary.” (Patient)

- “They work together well. I think it’s a very good program. It deserves an Emmy or something in that category.” (Patient)

- “I think it’s great because you can watch the video and then take the brochure home and really think about it“I think [the education package is] a good combination because everyone learns differently. Some are more visual, and some want to read up on things.” (Patient)

- “I think these are perfect words for [kidney patients].” (Patient) - “The way [the video] phrased everything and went into details...and then seeing it on the

screen, ya know, I thought ‘they did exactly that thing to me!’ [It] explained everything really well, and the words were good.” (Patient)

- “I think the glossary is helpful because so many people forget words. It will be helpful for people to look back and see what they have. Just a nice way to remember.” (Patient)

- “Nothing was really missing. I think [the education] covered everything.” (Patient) - “[The information] was very clearly presented and [the access types] were crystalized in

my mind. Overall, I was pleased with the video.” (Patient) - “I love the graphics through [these] things! Not too simplified. It is a perfect

representation of what’s supposed to be happening.” (Nephrologist) - “I know I’m losing patients no matter how hard I try because it’s so hard to explain...To

show this [video] would be so nice...it really captures it well. The patient’s experience with [the education] is always helpful.” (Interventionalist)

- “It was great. Just enough of a description without confusing people.” (Interventionalist) - “You have found the balance of a very complex disease process and a very emotional

disease process.” (Nurse)

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- “This is very ready for primetime. We’ve never had something like this.” (Nurse) - “It doesn’t talk down, and it’s specific. My population will understand every word of this. I

have no concerns with that.” (Nurse) a Bolded quotations are representative of interview content used to support the conclusion that further video and brochure revisions were unnecessary. Such quotations, along with an acceptability threshold of >90% and absence of suggested content changes during member-checking, were used to deem the education materials “final.”

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Supplemental Table S3. Stakeholder-informed vascular access educational brochure development. Content recommendations

(Pre-development) Suggested modifications

(Draft brochure) Alignment with video

(Final brochure) • Incorporate patient testimonials --- • Added patient quotes, questions

• Named and validated patient emotions (e.g., fear, confusion)

• Added imagery of diverse people

• Keep language simple without diluting content or omitting detail

• Clarify vague health terms (e.g., tests, tubes, vessels)

• Aligned language across materials

• Define key terms and ideas • Shorten definitions (e.g., vascular) • Add terms (e.g., bruit, cannulation)

• Included visual aids next to each glossary term (video still images)

• Added information on how to protect and care for access

• Depict the vascular access experience as a multi-step journey

• Simplify stop names, descriptions • Describe the variability in individual

access journeys • Explain potential complications

• Updated roadmap imagery to subway map imagery

• Stated that everyone’s journey is different

• Describe when and why a vascular access is needed

• Add information about hemodialysis • Included hemodialysis description and imagery

Focus group participants identified gaps in existing vascular access educational materials and made recommendations for new resources (column 1). In response, we developed a preliminary vascular access educational brochure for use in a QI project at Geisinger Health. QI project participants suggested modifications to the brochure to improve clarity and transparency (column 2). The final brochure reflects incorporation of suggested modifications in addition to changes which align the brochure with the aesthetics and content of the final video (column 3).

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Education Package Video and brochure available for review and download at go.unc.edu/dialysisaccess Image 1. Video Title Screen

Image 2. Brochure cover