Introduction
There are few decisions faced by patients with advanced CKD that are as challenging as whether to undergo maintenance dialysis. Although dialysis can offer many patients longer life and control of symptoms, dialysis also demands substantial time and life changes and is associated with complications, frequent interaction with the health care system (1,2), and loss of independence (3–5). For older adults (aged ≥75 years) with significant comorbidity, there is a growing body of evidence that dialysis may not extend survival (6–8) or improve quality of life (9–11) beyond what can be achieved with conservative approaches to advanced CKD.
Decision aids are intended to promote shared decision making by preparing patients for a collaborative role in the decision-making process with their clinicians. They are tools that enhance patients’ knowledge of clinical issues, their treatment options, and associated outcomes and help patients identify and communicate those options that best uphold their personal values and health goals (12). There have been a number of efforts to develop decision aids to assist patients with decisions about treatment of advanced CKD (13). However, most have focused primarily on the benefits and harms of dialysis and either do not mention a conservative option or present this as a last resort (14,15). Most decision aids that do present information on conservative kidney management were either developed in other countries (16–18) and/or are not widely accessible to US audiences (15,19). In this context, it is not surprising that many US patients feel that they have little choice but to start dialysis (20,21), and most are unaware of more conservative approaches (22). Decisions to forgo dialysis are relatively uncommon in the United States, and when they do occur, they tend to unfold in a chaotic manner, late in the illness trajectory, and with a small minority of patients enrolling in a hospice (23,24).
There is some evidence that patients who are interested in learning about conservative approaches to treatment of advanced CKD likely have unique needs for decision making. Qualitative studies indicate that the primary concerns and considerations that shaped decision making among patients enrolled in conservative kidney management programs can be similar but do not entirely overlap with those of patients who pursue dialysis. Patients receiving conservative kidney management have voiced that they prioritize quality of life, the nonphysical domains of well-being, independence, dignified life closure, not being abandoned by their health care providers for the decisions that they make, and managing prognostic uncertainty (25–30). However, decision aids that include some information on conservative kidney management present this option in terms of how it compares to dialysis across a narrow range of properties (e.g., life expectancy, operations needed), and thus may miss what matters most to patients who might consider conservative kidney management.
To address the specific concerns and needs of patients interested in learning about conservative kidney management, we used human-centered design to develop a dedicated decision aid that orients patients and families to conservative kidney management.
Materials and Methods
Development of the decision aid was guided by human-centered design principles, which aim to optimize fit between an intervention, its end users, and its context. At its core, human-centered design occurs over three phases (Figure 1) (31). It begins with a discovery phase that involves engaging persons most affected by the problem to build understanding of their needs and challenges. An intervention is then iteratively designed through multiple rapid cycles of ideation, prototyping, and testing with a small group of informants relevant to the problem who can contribute diverse perspectives. The intervention is then implemented in real-world settings with attention to how it can be further refined and to generate additional insights into the problem (32). Unlike the conventional scientific method that employs a linear, top-down approach that is predicated on a preformed hypothesis or theory-driven solution, human-centered design encourages the discovery of potentially new and unconventional solutions (33). Human-centered design is also a novel application of stakeholder engagement toward intervention development that puts the needs of persons most affected by the problem front and center and involves them throughout the life cycle of intervention development to ensure that the intervention is responsive to their needs and feedback (34).
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Figure 1.: Overview of decision aid development. The decision aid was developed using human-centered design principles in three phases: Discovery, Design, and Implementation.
Collection of informant data from patients and families was approved by the Institutional Review Boards at University of Washington and Veterans Affairs Puget Sound Health Care System. Reporting of our development process of the decision aid was informed by the International Patient Decision Aids Standards Collaboration DEVELOPTOOLS Reporting Checklist (Supplemental Material 1) (35).
Discovery Phase
The content and design of the decision aid was based on the findings of a qualitative study that we conducted of US patients with advanced CKD and their family members on their needs and preferences for information on conservative kidney management (described in detail elsewhere) (36). Briefly, we recruited patients aged ≥75 years with stage 4 or 5 CKD from three medical centers in the greater Seattle area and their family members between June 2019 and January 2020 to participate in qualitative interviews. Before completing interviews, participants were asked to complete a brief demographic survey inquiring age, race and ethnicity, sex, highest educational attainment, annual household income, relationship to patient (if participant was a family member), and whether they had ever heard of dialysis or conservative kidney management and discussed these topics with any of their health care providers before participating in the study. We also asked participants to rate their health, which has been shown to be predictive of disease progression and mortality among patients with advanced CKD (37).
To catalyze discussion on conservative kidney management, we shared with patients and family members prepared information on conservative kidney management adapted from existing English language decision aids developed in other countries and conducted 1-hour long audio-recorded interviews with them to elicit their reactions to the prepared information. We performed a thematic analysis of interview transcripts to identify dominant themes reflecting their views on information on conservative kidney management. We also invited participants to share their perspective on different terms used in medical literature to label approaches to caring for patients who forgo dialysis, including “conservative,” “palliative,” “supportive,” “medical management,” and “nondialysis” (38). We continued to recruit patients for interviews until no new themes related to their perspectives on information on conservative kidney management emerged with additional patient interviews (i.e., thematic saturation) (34).
Design Phase
On the basis of the findings of the qualitative study, T. Oestreich (a health educator) and S.P.Y. Wong (a nephrologist) created an initial prototype of the decision aid. We adhered to the Washington State Health Care Authority criteria for patient decision aids (39), which is adapted from the International Patient Decision Aids Standards (12) and provides 23 benchmarks in content, development, and effectiveness to ensure that decision making is informed and values based. Medical information reported in the decision aid was based on the findings of previously published meta-analyses and our own systematic review of existing literature on conservative kidney management (40–45). We used language and font sizes that accommodated readers with at least an eighth-grade literacy level and those with visual impairment. Due to financial constraints, we chose to create a print version of the decision aid, as opposed to other media types, and to create an English language version, as opposed to multiple versions in different languages. In light of the imprecision with which health outcomes can be estimated among conservatively managed patients (46) and concerns about limited numeracy among patients with advanced CKD (47), we opted not to use graphs or report probabilities in the decision aid.
The prototype underwent five rounds of review and iteration between April 2021 and August 2021. Review was performed by three different groups of informants. We assembled a multidisciplinary group of clinicians recruited from four medical centers in the greater Seattle area. Clinicians were recruited through the professional networks of S.P.Y. Wong. We also engaged the Kidney Research Institute Patient Advisory Committee, which is a national group of patients with advanced CKD who actively consult on kidney disease research and policy. We also solicited individual feedback from the patients and family members who participated in the qualitative study. Rounds of review were conducted separately for each group of informants and alternated between clinicians and either the patient advisory committee or patients and family members. Each informant contributed feedback to at least one round of review.
Informants were provided prototype iterations by mail or email and asked to provide their feedback as a group or individually, in writing or verbally, and in-person or over video or phone call, per their preference. Informants were also asked to markup copies of the prototype with their comments and suggestions then return it to us. We recorded written notes on verbal feedback provided. With each round of review, T. Oestreich and S.P.Y. Wong together reviewed all feedback, and similar feedback shared by at least two informants were incorporated into prototype iterations. T. Oestreich and S.P.Y. Wong used a consensus-based approach to determine how prototypes were revised to address the feedback received. After the final round of review and iteration, we shared the prototype with four health educators known to T. Oestreich and who were employed at two of the medical centers for input on layout and clarity.
Demographic information on clinician, members of the patient advisory committee, and health educators were not collected.
Implementation Phase
A final prototype of the decision aid was tested in a randomized controlled pilot trial to evaluate its feasibility and acceptability among patients aged ≥75 years with stage 4 or 5 CKD receiving care at four medical centers in the greater Seattle area and their family members. To complete the implementation phase of the development of the decision aid, we conducted a nested qualitative study among a subset of trial participants between September 2020 and September 2021 to ascertain their feedback on the prototype. To accomplish this, we randomly selected half of patients and their family members to receive the final prototype by mail. Patients and their family members were given approximately 2 weeks to review the prototype and then were asked to participate in phone interviews for their feedback using the following probes: (1) What did you like/dislike about it? (2) What was useful/not useful about it? (3) What was the most difficult part of the it? (4) What suggestions do you have to improve it? Interviews were audio-recorded and transcribed verbatim without personal identifiers. Participants were also asked to complete a similar demographic survey as that used in the discovery phase.
To analyze transcripts, we used a rapid assessment process (48), which is a structured approach to analyzing qualitative data that uses a set of a priori defined domains to organize and summarize qualitative data efficiently while still allowing for unexpected yet grounded concepts to emerge from the data within these domains (49). First, we constructed a matrix with four domains reflecting domains of feedback on the decision aid elicited during interviews: (1) likes/dislikes, (2) useful/not useful, (3) difficulties, and (4) suggestions. Second, S.P.Y. Wong and B. Chandler (a Doctor of Nursing Practice with palliative care and qualitative research training) independently reviewed 10 transcripts line by line and recorded emergent themes and their illustrative quotations in the matrix under their relevant domains. B. Chandler and S.P.Y. Wong then together reviewed the results to assess thoroughness of review and resolved through discussion any inconsistencies about emergent themes or how they were categorized into their relevant domains. B.C. reviewed all remaining transcripts in a similar fashion. S.P.Y. Wong, B. Chandler, and T. Oestreich then together reviewed all of themes and their associated quotations assembled into the matrix and, using a consensus-based approach, refined theme definitions, merged similar themes, and made final revisions to the decision aid that addressed the feedback received. Patients and family members were mailed the final version of the decision aid for their record.
Results
Discovery Phase
Fourteen patients (age 71±12 years; 79% White; 29% women) and six of their family members (age 71±12 years; 66% White; 67% women) participated in interviews on their needs and preferences for information about conservative kidney management (Table 1). Although all of the patients reported being familiar with dialysis, only 29% (n=4) of patients and none of their family members had recalled ever discussing conservative kidney management with a health care provider before participating in the study.
Table 1. -
Characteristics of patient and family member informants
| Characteristic |
Human-Centered Design |
| Discovery and Design Phases |
Implementation Phase |
| Patients (N=14)
a
|
Family Members (N=6) |
Patients (N=36) |
Family Members (N=29) |
| Women |
4 (29) |
4 (67) |
15 (44) |
22 (76) |
| Age, mean (SD) |
79 (7) |
71 (12) |
81 (5) |
72 (11) |
|
Race
|
| White |
11 (79) |
4 (67) |
29 (81) |
27 (93) |
| Other
b
|
3 (21) |
2 (33) |
7 (19) |
2 (7) |
|
Highest educational attainment
|
| Any high school |
4 (29) |
0 |
9 (23) |
3 (10) |
| Any college |
4 (29) |
5 (83) |
16 (40) |
13 (45) |
| Any graduate school |
6 (43) |
1 (17) |
15 (27) |
13 (45) |
|
Relationship to patient
|
| Spouse/live-in partner |
NA |
5 (83) |
NA |
21 (72) |
| Adult child or other |
NA |
1 (17) |
NA |
8 (18) |
|
Household annual income
|
| <$50,000 |
7 (50) |
3 (50) |
16 (44) |
8 (18) |
| $50,000–$75,000 |
2 (14) |
1 (17) |
6 (17) |
5 (17) |
| >$75,000 |
2 (14) |
2 (33) |
9 (25) |
11 (38) |
| Decline to respond |
3 (21) |
0 |
5 (14) |
5 (17) |
|
Self-rated health
|
| Excellent or very good |
3 (21) |
3 (50) |
7 (19) |
19 (66) |
| Good |
6 (43) |
2 (33) |
11 (31) |
9 (31) |
| Fair |
4 (29) |
1 (17) |
12 (33) |
1 (3) |
| Poor |
1 (7) |
0 |
7 (19) |
0 |
|
Have you ever heard of the following?
|
| Dialysis |
14 (100) |
6 (100) |
36 (100) |
29 (100) |
| Discussed it with your health care provider |
7 (50) |
1 (17) |
21 (58) |
14 (48) |
| Conservative kidney management |
5 (36) |
3 (50) |
4 (11) |
5 (17) |
| Discussed it with your health care provider |
4 (29) |
1 (17) |
2 (6) |
2 (7) |
Data shown as n (%) unless otherwise indicated. NA, not applicable.
aOne patient died before participating in the design phase.
bIncludes those who self-identified as Black, Asian or Pacific Islander, Latino or Hispanic, Native American, multiracial or other.
Major content and design elements of the initial prototype of the decision aid were informed by the four themes that emerged from interviews with patients and family members (Table 2): (1) core elements of conservative care: patients and families appreciated the whole-person, team-based, and structured approach to care and its focus on symptom management, maintaining current lifestyle, and managing health setbacks; (2) importance of how conservative care is framed: participants were more receptive to this treatment option when this was framed as an active rather than passive treatment approach and appreciated transparency around the inherent uncertainties with illness course and prognosis; (3) an explicit approach to shared decision making: participants believed decisions about conservative kidney management and dialysis should address risk and benefits of treatment options, family members’ and clinicians’ input, and patients’ values, goals, and preferences; and (4) relationship between conservative care and dialysis: participants did not see these treatment options as mutually exclusive and valued flexibility to alter their treatment decisions should their circumstances, needs, or values change over time (36). The term “conservative” was generally more acceptable to participants than other terms used to label approaches to caring for patients who forgo dialysis and was easily understood as a noninvasive approach to kidney disease when compared with dialysis (36).
Table 2. -
Discovery phase: Examples of major design and content elements of the initial decision aid prototype
| Themes Reflecting the Information Needs and Preferences of Patients and Family Members Elicited in Qualitative Interviews |
Exemplar Quotations from Patients and Family Members |
Examples of How Addressed in the Prototype |
| Theme 1: Core elements of conservative care |
“I’d like to think the health care provider would be wanting to help treat palliatively or otherwise any part of the process of the kidney failure … I like it when care teams treat the whole person.” |
Spoke to social, emotional, spiritual needs and end-of-life concerns with advanced CKD |
| “I’m realistic, I know that [my kidney disease] is not going to get better. Even with whatever I know, I still need somebody to tell me, ‘this is what’s happening.’ I appreciate that.” |
Provided overview of kidney disease and structured information on conservative kidney management according to severity of kidney disease |
| “I take life as it comes, there’s a reason for what’s going on, that doesn’t mean we’re going to roll over and play dead. We’re gonna try to solve the problem.” |
Introduced concept of action plans to mitigate medical crisis |
| Theme 2: Importance of how conservative care is framed |
“…to treat the symptoms and preventing or managing medical problems that might result from damaged kidney function, protecting remaining kidney function. Help a person live well without dialysis … That statement makes me feel positive, kind of anticipating maybe a good outcome … I felt good about it … It gives you hope.” |
Used active words such as “plan,” “program,” “treatment,” “approach” to describe conservative kidney management |
| “You really can’t predict how your body is going to react to any care and you can’t predict your life expectancy.” |
Acknowledged uncertainty in prognosis and that outcomes of conservative kidney management can vary between individual patients |
| “I think people should be made aware of what could contribute to things going the wrong direction because they may not be doing it on purpose.” |
Described the kinds of factors that can affect outcomes with conservative kidney management |
| Theme 3: An explicit approach to shared decision making |
“Conservative care isn’t just giving up … it may or may not curtail life expectancy, but you may feel better.” |
Reported pros and cons of conservative kidney management |
| “At my age–listen—I’ve had a wonderful life. I’ve traveled all over the world several times. I have a great woman of 50 years … I think that there should be more attention in medicine in general for people making decisions like this about their lives.” |
Incorporated self-reflection exercises to help readers articulate their personal values and goals for health care |
| “It’s always a better idea to have other minds to help you decide on something. That is for the best, to make a good decision. A member of your family, I guess. Of course, the medical profession.” |
Encouraged identifying persons and resources important to them in making medical decisions |
| Theme 4: Relationship between conservative care and dialysis |
“I mean everybody offers a different perspective. My doctor provides excellent information, but sometimes it’s nice to have even something like a support group of people that have gone through it, or people that are aware of what’s going on, or going through it.” |
Shared exemplar quotations from patients and family members who participated in the qualitative study to illustrate different points of views on decision making about conservative kidney management dialysis |
| “I'm not trapped in any one particular course of treatment … It’s comforting to know that if I’m given sufficient reason, I could change my mind, but I have no reason to think I would do that at this point. Again, it’s positive information that I needed to know.” |
Presented the option of changing one’s mind about conservative kidney management and dialysis |
| “It’s always going to be an individual, case-by-case basis, so that the caregivers, the renal specialists, are going to look at all of the information and counsel the person … That’s really conservative care.” |
Pointed out that treatment plans with conservative kidney management adapt with changes in patients’ values, goals, and preferences |
On the basis of these findings, our initial prototype was composed of five sections: (1) a brief description of kidney disease and its signs and symptoms; (2) an overview of conservative kidney management, its core elements, and supports provided according to level of severity of symptoms; (3) the pros and cons of conservative kidney management; (4) the option of changing one’s minds about conservative kidney management; and (5) self-reflection exercises to assist patients with articulating their personal goals and values and help them prepare for conversations about conservative kidney management with their health care providers and others who support them with medical decision making. Under the section on pros and cons of conservative kidney management, we summarized the findings of four previously published meta-analyses (40,41,43,45) and two systematic reviews of existing literature on conservative kidney management (Supplemental Material 2) (42,44). These studies showed that survival advantages with dialysis are diminished with increasing age and comorbidity (40–42,45,50); changes in overall quality of life may be similar between treatment groups, although there may be differences with regards to specific symptoms (42,51); and conservatively treated patients spend less time in the hospital than those treated with dialysis (45). We chose to use the term “conservative” throughout the prototype because it was generally well received by participants and is also used in current clinical practice guidelines (52,53). We also used stock photos of people with diverse ages, genders, and racial backgrounds, and featured exemplar quotations from patients and family members who participated in the qualitative study reflecting their different perspectives on conservative kidney management.
Design Phase
Our multidisciplinary panel of clinicians comprised seven nephrologists, three nephrology nurses, one renal social worker, two palliative care physicians, two geriatricians, and one family practice physician. All but one (who died) of the patients and family members who participated in the qualitative study participated in the design phase.
During rounds of review, informants generally regarded each iteration of the prototype positively. Clinicians found the information “helpful in painting conservative care in a positive light, making conversations easier” and “instructional to both patients and providers.” One nephrologist remarked that “the paragraph about dialysis is very neutral, which is probably what you are aiming for and leading with the negatives may be too judgmental, but I feel like people don't always get how bad dialysis can be.” Members of the patient advisory committee believed that the information “expressed hope” and would be a “great resource.” One member commented that although the information focused on conservative kidney management, it also gave readers a “better feel for the whole decision” about treatment of advanced CKD that they were facing. Patients and family members felt the information provided a “good explanation about the details of conservative care” and “would recommend this information to others.” One patient felt that the organization and flow of information “goes with my way of thinking and understanding.”
Examples of constructive criticism from informants and how they were addressed in prototype revisions are outlined in Table 3. The final prototype included an additional introductory section describing the intended audience for the decision aid and expanded on the information under sections describing the pros and cons of conservative kidney management, options for changing one’s minds about conservative kidney management, and the supports provided with conservative kidney management.
Table 3. -
Design phase: Examples of iterative design changes to the decision aid prototypes
| Stakeholder Group |
Examples of Stakeholder Feedback on Prototypes |
Corresponding Changes to Prototypes to Address Feedback |
| Patient and family members |
Allow for individualization of care plan |
Outlined core elements of conservative kidney management while encouraged working together with providers to develop personal care plan |
| Clarify for whom the decision aid is intended |
Opened the decision aid with an introduction clarifying that the intended audience is for people who are interested in learning about treatments that do not involve dialysis and who cannot or do not want a kidney transplant |
| Some self-reflection exercises seemed redundant |
Condensed self-reflection exercises to four questions posed to the reader |
| Clinicians |
Explicitly state that patients can die from kidney disease |
Acknowledged the possibility of dying from kidney disease |
| Acknowledge that non-nephrologists can take lead or support other nephrologists with conservative kidney management |
Avoided specialty-specific perspectives and used generic terms to refer to providers, such as “health care team” |
| Clarify symptoms and health care burdens associated with each treatment option |
Added information on possibility of surgeries, time spent in the hospital, and symptoms with conservative kidney management and dialysis |
| Patient advisory committee |
Address stigma around conservative kidney management and misperception that it is equivalent to no care |
Added a quotation from a patient who participated in qualitative study that reflected their views of conservative kidney management as part of his “fight” against kidney disease |
| Clarify that conservative kidney management is integrated with other aspects of kidney care |
Explained that conservative kidney management is part of the continuum of kidney care |
| Acknowledge religious influences in decision making |
Included self-reflection exercise to elicit spiritual or religious factors important to patients’ decision making |
Implementation Phase
Among participants who enrolled in the larger pilot trial, 44 patients and 33 family members were randomly assigned to receive the decision aid of whom 36 patients (age 81±5 years; 81% White; 44% women) and 29 family members (age 72±11 years; 93% White; 76% women) provided feedback (Table 1). Similar to the informants who contributed to the discovery and implementation phases of decision aid development, all were familiar with dialysis; however, only a minority of patients (n=2; 5%) and family members (n=2; 7%) had ever spoken with a health care provider about conservative kidney management before participating in the study.
Patients and family members generally thought the format of the final prototype of the decision aid was “clear,” “thorough,” and “well-organized.” Many were satisfied with the length of the decision aid and “liked that it was short enough for me to remember what was in there.” Some viewed the decision aid to be a “starting point” and “gentle” introduction to conservative kidney management, and that “given the range of people that you’re encountering, that this is a pretty good guide for that” but “would’ve liked it to have more depth.” Patients and family members also recognized that the information was written in a way that “presumed that the reader is already familiar with dialysis” and, at the same time, “didn’t make it sound like dialysis was the only thing you could do.” Many appreciated the inclusion of quotations of patients and family members who participated in the prior qualitative study reflecting their perspectives of decision making about treatments for advanced CKD and “liked that you put other peoples’ thoughts and their feelings in there … to kind of maybe get some insight.” Participants also thought the self-reflection exercises included in the decision aid “gives me something to think about” and “liked that it’s encouraging me to have more of a discussion with my doctor about it.”
Examples of feedback that were incorporated into the final revisions of the decision aid are displayed in Table 4. On the basis of feedback, we included additional of examples of common questions that patients and family members had about conservative kidney management to the section with self-reflection exercises. We also added a final section to the decision that contained information and links to websites and other educational resources on conservative kidney management. The final version of the decision aid (Supplemental Material 3) met all of the relevant benchmarks for decision aids as recommended by the Washington State Health Care Authority (Supplemental Material 4).
Table 4. -
Implementation phase: Examples of final revisions to the decision aid after pilot testing
| Areas of Feedback |
Exemplar Quotations from Patients and Family Members Regarding their Feedback |
How Addressed in Final Revisions |
| Content |
“Sometimes when you’re asked to fill in the blank, sometimes things don’t quite come, so I’m wondering if there’s any maybe suggested ideas, to sort of springboard people of things to think about.” |
Provided examples of common questions that patients and family members had about conservative kidney management for their providers after reviewing the decision aid |
| “A lot of the people that this guide would go to or be for would be very much online, they would read … they’ll see the word ‘dialysis’ and they’ll go to Google and look it up, you know?” |
Added a section with weblinks to additional resources related to conservative kidney management |
| “This is going to an awful lot of different people with different mindsets, different levels of anxiety or concern or illness, so I think it does need to acknowledge that one size doesn’t fit all … I would expect that the guide would say that there is a lot more to be discussed, and this is one of the roles of the team.” |
Included a quotation from a patient who participated in the pilot study that speaks to the need to consult with their providers about their specific preferences and details about their care plan and prognosis |
| Format |
“I would bold out conservative care, and I would put dialysis in a different color.” |
Color coded sections describing conservative kidney management and dialysis to make clearer which information pertained to which treatment |
| “I don’t know if it’s a dislike … I always find myself with testimonials, being a little bit more like advertising.” |
Moved quotations from patients and family members to bottom panel of a page |
| “Try to imagine how people feel when they’re handed this … I just want to go home and wrap up in a blanket and think about it.” |
Moved self-reflection exercises from middle to end of the decision aid and added supportive and empathic statements in this section |
Discussion
We describe a systematic approach to developing a patient- and family-centered decision aid to support decision making about conservative kidney management using human-centered design principles. Human-centered design principles help to support the trustworthiness, acceptability, utility, validity, and reliability of the development process for patient decision aids, and to ensure involvement of patients, family members, health professionals, and other experts before adoption of the tools (13). Our process revealed several unique considerations with developing a decision aid on conservative kidney management within a broader context where discussions on treatments for advanced CKD are anchored in dialysis. It also revealed several challenges with developing a decision aid that can accommodate patients and family members with diverse needs, backgrounds, and perspectives.
Our decision aid on conservative kidney management seeks to fill an important gap in high-quality educational resources for patients and their families who are facing decisions about treatment of advanced CKD. Our decision aid is tailored to address the distinct needs and perspectives of older patients with advanced CKD. Other existing decision aids are designed for broad audiences, with some presenting side-by-side comparisons of dialysis, kidney transplantation, and conservative kidney management. Although the existing approaches might be well suited to patients who are first learning about their treatment options and are eligible to receive any of these treatments, they may be of less relevance to patients who are unable to receive a kidney transplant or certain types of dialysis (e.g., home dialysis) or are concerned that the burdens of dialysis outweigh its potential benefits. Consistent with prior studies illustrating how treatment of advanced CKD is typically framed to such patients as “dialysis or death” (54), the patients and families among whom our decision aid was developed knew of dialysis but were largely unfamiliar with conservative kidney management. Hence, our decision aid served not only to introduce patients and families to conservative kidney management, but also to disrupt preconceived notions of what treatments for advanced CKD were available to them if they did not undergo dialysis.
Many nephrologists find conversations with patients who do not wish to undergo dialysis particularly difficult and fear taking away “hope” and “having nothing to offer” (55) when they do not pursue dialysis. In contrast, our decision aid presents conservative kidney management as a proactive choice. This aid focuses on the positive elements of conservative kidney management and outlines a planned approach to caring for patients with advanced CKD over the course of their illness trajectory. In fact, not only did patients and family members find the decision aid to be informative, but clinicians also found it to be instructional and thought it could help guide their conversations with patients and families. Further research is needed to evaluate the efficacy of the decision aid in supporting shared decision making about conservative kidney management between patients, families, and clinicians.
In introducing patients and family members to conservative kidney management, our decision aid cultivated a desire among them for more information about their likely outcomes and the kind of care that they could expect to receive if they chose this treatment option. To support this deeper inquiry into conservative kidney management, our decision aid directs patients and families to consult the health care providers who are most familiar with their overall health and contextual factors for guidance and provides self-reflection exercises to help prepare them for these types of conversations with their providers. The aid also offers websites and other sources of information on conservative kidney management as further references. Nonetheless, research on conservative kidney management is still very limited, and there is a high degree of heterogeneity in outcomes with conservative kidney management that complicates the level of precision in a decision aid that might be desired by some patients and family members (44). Further, there is heterogeneity across health systems in care practices, available community-based resources, and care infrastructure to support patients and families that can also shape their care experiences and outcomes with conservative kidney management (56). Additional research is needed to develop different models of conservative kidney management that can effectively support the varied needs and preferences of patients and families who choose this treatment option. In addition, the current decision aid will need updating as new evidence on conservative kidney management emerges.
Our process for developing a decision aid on conservative kidney management has the following limitations. First, the development process was largely based on the input of English-speaking older patients with advanced CKD and their family members who were recruited from one geographical area and were mostly White. Their perspectives may not be generalizable to those residing in other regions and those who are of different racial backgrounds and younger age among whom forgoing dialysis is much less common (57,58). More work is needed to develop information on conservative kidney management that effectively responds to the concerns of patients and family members representing diverse languages, ages, cultures, and geographic backgrounds. Second, due to financial constraints, we opted to create a paper version of the decision aid, which limits its accessibility to those with visual impairments or very limited literacy. Furthermore, the design and content of the decision aid was based on the feedback of informants who were mostly well educated, had reasonable health, and did not have cognitive impairments. Information on conservative kidney management delivered using different media formats and pedagogical styles is necessary to support diverse learning needs and preferences. Third, although the informants in this study did not recommend using numerical data in the decision aid, future work is needed to understand how to effectively convey this type of information to support informed decision making about conservative kidney management. Fourth, patients’ and family members’ feedback on the decision aid could differ when delivered in different contexts and circumstances, such as during a clinical encounter or by a health care provider. Finally, although our decision aid provides some information on dialysis, it was designed with patients and family members who already had some prior knowledge of dialysis, and thus, is best used as an adjunct to currently available educational tools on treatments for advanced CKD rather than as a standalone resource.
The process of developing a decision aid on conservative kidney management using human-centered design principles revealed important considerations regarding decision making about treatment of advanced CKD. Given the broader context in which dialysis is presented to patients and families as the predominant option for advanced CKD, targeted efforts to educate them about conservative kidney management with tools such as our dedicated decision aid can help to reorient them to therapeutic alternatives to dialysis. A decision aid on conservative kidney management will require ongoing iteration as better prognostic tools and more evidence on best practices and long-term outcomes with conservative kidney management emerge.
Disclosures
S.P.Y. Wong reports research funding from the Doris Duke Charitable Foundation and National Institutes of Health, none of which poses a financial conflict of interest with respect to this work. J.R. Curtis reports royalties from UpToDate; being on the advisory board of the Cambia Health Foundation Sojourns Scholars Program; and other interests or relationships with Cambia Health Foundation and the National Institutes of Health. All remaining authors have nothing to disclose.
Funding
This work was made possible through research funding provided by the National Palliative Care Research Center. The funder had no role in study design, data collection, analysis, reporting, or the decision to submit for publication.
Acknowledgments
We are grateful to the patients and family members, the Kidney Research Institute Patient Advisory Committee, and the clinicians and allied health professionals for their contributions to this decision aid. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position or policy of the Department of Veterans Affairs or US government.
Author Contributions
B. Chandler, T. Oestreich, and S.P.Y. Wong were responsible for the formal analysis and investigation; J.R. Curtis and S.P.Y. Wong were responsible for the conceptualization, methodology, and supervision; S.P.Y. Wong was responsible for funding acquisition and resources; and all authors wrote the original draft of the manuscript and reviewed and edited the manuscript.
Each author contributed important intellectual content during manuscript drafting or revision and agrees to be personally accountable for the individual’s own contributions and to ensure that questions pertaining to the accuracy or integrity of any portion of the work, even one in which the author was not directly involved, are appropriately investigated, and resolved, including documentation in the literature if appropriate.
Data Sharing Statement
Partial restrictions to the data and/or materials apply: anonymized data for the study will be made available to interested parties upon written request and submission of a formal written research proposal that has undergone human subjects research review.
Supplemental Material
This article contains supplemental material online at https://kidney360.asnjournals.org/lookup/suppl/doi:10.34067/KID.0000392022/-/DCSupplemental.
Supplemental Material 1. DEVELOPTOOLS Reporting Checklist for reporting of development process of patient decision aids.
Supplemental Material 2. Summary of findings from meta-analyses and systematic reviews on conservative kidney management.
Supplemental Material 3. Decision aid on conservative kidney management.
Supplemental Material 4. Washington State Health Care Authority Patient Decision Aid Criteria.
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