Visual Abstract
Abstract
Background and objectives The language used to communicate important aspects of kidney health is inconsistent and may be conceptualized differently by patients and health professionals. These problems may impair the quality of communication, care, and patient outcomes. We aimed to describe the perspectives of patients on terms used to describe kidney health.
Design, setting, participants, & measurements Patients with CKD (n=54) and caregivers (n=13) from the United States, United Kingdom, and Australia participated in ten focus groups to discuss terms for kidney health (including kidney, renal, CKD, ESKD, kidney failure, and descriptors for kidney function). We analyzed the data using thematic analysis.
Results We identified four themes: provoking and exacerbating undue trauma (fear of the unknown, denoting impending death, despair in having incurable or untreatable disease, premature labeling and assumptions, judgment, stigma, and failure of self); frustrated by ambiguity (confused by medicalized language, lacking personal relevance, baffled by imprecision in meaning, and/or opposed to obsolete terms); making sense of the prognostic enigma (conceptualizing level of kidney function, correlating with symptoms and effect on life, predicting progression, and need for intervention); and mobilizing self-management (confronting reality, enabling planning and preparation, taking ownership for change, learning medical terms for self-advocacy, and educating others).
Conclusions The obscurity and imprecision of terms in CKD can be unduly distressing and traumatizing for patients, which can impair decision making and self-management. Consistent and meaningful patient-centered terminology may improve patient autonomy, satisfaction, and outcomes.
- communication
- education
- nomenclature
- patient-centered care
- chronic kidney disease
- caregivers
- focus groups
- judgment
- self-management
- ownership
- language
- prognosis
- personal satisfaction
- renal insufficiency
- chronic
- kidney failure
- decision making
- patient participation
- fear
- patient-centered care
- Australia
Introduction
Patients with CKD have an increased risk of mortality, life-threatening adverse events such as cardiovascular disease, and treatment complications (1–5). The unpredictability and uncertainty of the disease course, and complexities in management, necessitate patient-centered communication and education to support shared decision making (4,6–9). However, inconsistencies in the use of medical terms used in CKD, which may also be inaccessible and confusing, makes this challenging and could harm patients (8,10–18). Across medical specialties, there are concerns that “inappropriate use of medical terms in healthcare professional-patient communication” (19) can impair patient awareness, empowerment, autonomy, mental health, satisfaction, and adherence (8,17–21).
The terms used for kidney health may be imprecise, misleading, and difficult to understand (18,22–24). Some terms are conceptualized differently by patients and health professionals (15,22,25). For example, “renal” and “kidney” are used to described kidney health, but “renal” may be unfamiliar to patients and the public, preventing awareness and advocacy. Some patients are unsure about the meaning of “chronic” in CKD (15,22), and the term “ESKD” could provoke panic and despair, and disengagement from health services. Problems with communication may also contribute to barriers to accessing KRTs including home dialysis or transplantation. Another challenge is that patients may be asymptomatic until they reach kidney failure. Difficulties in understanding terms have been found to cause fear and intimidation, preventing patients from communicating with their nephrologist and accessing information (18,21).
There is little evidence on how patients and caregivers define and interpret the terms used for kidney health, and its impact. This study aimed to describe the broad range, and depth, of patient and caregiver beliefs and perspectives on terms commonly used to describe aspects related to kidney health. Such insights may help to ensure that the terms used for kidney health can better support communication, decision making, self-management, and outcomes in patients with kidney disease.
Materials and Methods
Context
This focus group study was commissioned by Kidney Disease Improving Global Outcomes (KDIGO) in preparation for a Consensus Conference on Nomenclature for Kidney Function and Disease to inform the revision of nomenclature for kidney disease, and to establish a patient-centered and precise glossary of terms related to kidney disease. We used the Consolidated Criteria for Reporting Qualitative Studies (26) to report this study.
Participant Selection
Patients aged 18 years and over, English-speaking, and with stage 1–5 CKD, receiving dialysis, or who had received a kidney transplant, and their caregivers (family members involved in the care of the patient), were eligible to participate. Participants were identified and recruited from hospitals and the KDIGO Patient Network. Ethics approval was provided by The University of Sydney (2015–288), Baylor College of Medicine (H-43848), Imperial College Healthcare National Health Service Trust, and Sheffield Teaching Hospitals National Health Service Foundation Trust (18/WS/0084). To obtain a wide diversity of perspectives, we used a purposive sampling strategy to include a broad range of demographics (age, gender, and educational attainment) and clinical (stage of CKD, diagnosis) characteristics. Invitations were sent by email and by post. Informed consent was obtained from all participants.
Data Collection
The 2-hour focus groups were conducted from March to May 2019 in meeting rooms external to clinical settings. Focus groups are used to encourage participants to discuss and clarify their views, to elicit a breadth and depth of data rather than to assess the frequency of different opinions (27,28). The question guide was developed from the literature (3,10,11,15,18–21,29,30) and discussion with the investigator team, which included patients (Supplemental Material). We asked questions about terms used to describe kidney health that participants perceived to be challenging, the meaning and effect of these terms, and suggestions for alternative terms. We asked about specific terms: kidney versus renal, CKD, ESKD, kidney failure, kidney function (including descriptors and measures for kidney function, e.g., CKD stages and eGFR). A researcher (AT or TG, both women with experience in qualitative research and not known to the participants before the study) facilitated the group and a cofacilitator (JS, LD, NSR, or AB) took field notes. We convened focus until we reached data saturation. All groups were audio-recorded and transcribed verbatim.
Analysis
We used thematic analysis to analyze the data. All transcripts were imported into HyperRESEARCH software to facilitate data analysis. AT reviewed the transcripts line-by-line to inductively identify concepts related to patient and caregiver perspectives on terminology for kidney health. The preliminary themes were discussed with the cofacilitators JS, TG, NSR, AB, and LD, who also read the transcripts (investigator triangulation), and sent to participants for comment (member-checking), and the feedback was integrated into the final analysis to ensure it reflected the breadth and depth of the data. A thematic schema was developed to summarize and depict relationships among the themes (Figure 1).
Thematic schema showing that frustration with the ambiguity of terms used to describe kidney health could provoke and exacerbate undue distress and trauma. Patients indicated a preference for terms that conveyed meaningful information about their prognosis, effect on life, and need for intervention. Some terms were perceived to mobilize and motivate self-management for preventing the progression of CKD. Of note, multiple themes could be applicable to the same terms.
Results
In total, 54 patients with CKD and 13 caregivers participated in ten focus groups in the United States (three groups, n=21), United Kingdom (three groups, n=18), and Australia (four groups, n=28). Participant characteristics are shown in Table 1. Forty-three (64%) were aged over 50 years and 43 (64%) were women. Five were diagnosed with CKD during childhood (aged under 18 years). Patients were on a variety of treatment modalities, on hemodialysis (n=14), used peritoneal dialysis (n=4), or had a kidney transplant (n=20), or were not on KRT (n=16). Most (n=51) had high educational attainment (professional certificate, undergraduate, or postgraduate degree).
Characteristics of the participants (N=67)
We identified four themes: provoking and exacerbating undue trauma, frustrated by ambiguity, making sense of the prognostic enigma, and mobilizing self-management. The respective subthemes are described in the following section. Selected quotations to support each theme are available in Table 2. The focus groups contributing to each theme are indicated in Supplemental Table 1. The thematic schema is provided in Figure 1.
Selected illustrative quotations
Provoking and Exacerbating Undue Trauma
Fear of the Unknown.
Terms that were unfamiliar, obscure, and with a negative connotation (e.g., chronic or end stage) caused shock and fear in patients, and families, which remained unresolved for some: “you always remember the day you’re told you’ve got CKD, it stays with you, the language they use, it’s critical.” Being uncertain of the meaning and implications, the words were “doom-laden,” “scary,” and sounded “extreme and severe.”
Denoting Impending Death.
The term “ESKD” indicated to participants that death was imminent: “I literally thought I had months to live, I had accepted the fact I was going to die and needed to take care of business so that my daughter was going to be taken care of.” It caused participants to perceive themselves to be “on a cliff, about to fall off.” The term was “daunting,” “demoralizing,” and compounded feelings of isolation. Participants noted that “end stage” in other conditions, such as cardiovascular disease, cancer, and cystic fibrosis, refers to “those last few months of life, when you’re at the end” or means palliative care. For some patients, it took time to realize that it meant “end stage for the kidney, it’s not end stage for our life.” They suggested using “milder” terms such as referring to the stages of CKD or explaining that “kidneys are not functioning very well,” so patients would know that “it is serious but also understand how it’s not the end of the road, there’s a life beyond.” Some patients in the United States considered it possible that “ESKD” may be necessarily severe to access Medicare reimbursement for dialysis.
Despair in Having Incurable and Untreatable Disease.
For some patients, the word “disease” had given them “false hope” because the term “disease” implied there was a cure. Some perceived the term “end stage” to mean the “end of a healthy life, the end of a positive mindset,” and initially thought there was “nothing you can do about it.” The term “chronic” was understood by some to mean that things would not improve: “if they’re chronic, I don’t know that they get better.” They felt helpless, unable to control what was happening, and lost hope. “If you have cancer, you can fight it and win it or lose it. If you have kidney failure, it’s for life. You don’t fight, you don’t win, you don’t lose, you just live with it.” Seeing the decline in their own kidney function was described as “watching this guillotine.” Some suggested that “failure” may be preferred as a term compared with “ESKD” because “you know that you can come back from that, there are options where you can continue.”
Premature Labeling and Assumptions.
Some despised the term “predialysis” because it was unnecessarily precipitating the need for dialysis: “it assumes you know what the future holds.” This was because of fear and reluctance to commence dialysis. They voiced the opinion that some patients could not get access to dialysis, may choose not to commence dialysis, or had stable kidney function and may not be ready to consider KRT: “that alludes to something that might not happen for that person, if you’re called a predialysis patient, is time ticking before I start that?” “Predialysis” was deemed a “derogatory” term because it implied passivity in patients: “I don’t want someone telling me I’m predialysis because I could change my lifestyle.” Some suggested it would be “better to talk about the function that they do have, than what might happen in the future.”
Judgment, Stigma, and Failure of Self.
Terms such as “disease” and “failure” impaired self-esteem and sense of personhood. Some experienced “depression” because they were “labelled with the disease,” or had interpreted “failure” to mean that their “physical existence is failing,” or they had “done something wrong.” They emphasized that these concepts had to be “separated from the person.” In comparing with diabetes, some noted, “no one says, “you’ve got diabetes, your pancreas has failed”,” and that clinicians did not use “end stage pancreas failure.”
Frustrated by Ambiguity
Confused by Medicalized Language.
Participants emphasized that the word “kidney” should be used instead of “renal” to improve awareness and understanding among patients and the general community, to support education and advocacy: “What’s renal failure? It’s totally Greek to me.” Some defined “renal” as “the whole system, the bladder,” whereas the kidney was the organ. They noted that the term “renal” exacerbated confusion in patients with CKD who had cognitive impairment, including difficulty in concentrating. Some argued that “doctors don’t have to speak a different language to patients” so patients could relate to them: “It’s about making things simple for everybody, so that language isn’t a weapon.” “Chronic” and “acute” were considered very “medicalized with no immediate translation into common usage,” and other terms such as “low clearance,” “GFR,” and “nephrology” were confusing.
Lacking Personal Relevance.
Participants identified terms that were not applicable at an individual level or to specific populations, and recognized that establishing terms was challenging with “so many different trajectories, it’s really difficult to lump together and talk about them the same.” “CKD stages” were not useful if patients were already at “end stage” at diagnosis: “when I first got diagnosed, I was in stage 5 so that meant nothing to me.” “Pre-KRT/predialysis” would not apply to all patients as “it is not a luxury that everybody has.” Also, patients in the United States recognized there were differences in estimating eGFR for black patients, which led to confusion about this term, “they have in parenthesis that if you’re African American it’s a different number (for eGFR), but they didn’t explain why it’s a different.”
Baffled by Imprecision in Meaning.
Some felt that certain terms did not convey kidney function and disease with adequate accuracy. Some thought “CKD stages” were “vague.” The word “disease” was perceived to be inappropriate for patients who had a congenital “abnormality,” or had “declining kidney function because of cardiac issues.” “Chronic” was regarded as too “severe” for patients in the earlier stages of kidney disease. “Kidney failure/impairment” were suggested as terms that were “honest.” “Is it just kidney failure? Can we just ditch the end stage rubbish? Because that’s the period when your kidneys actually fail, when they’re no longer able to do the job filtering out the fluids and the toxins.”
Opposed to Obsolete Terms.
Some regarded the term “end stage” to be outdated because KRT was available to prolong life. “The more technology develops, the less appropriate that word “end” becomes. For the majority of people, there are life-sustaining treatments out there, dialysis and transplant.” They asserted that classifying patients living long-term with dialysis or transplant as “end stage” was “misplaced”; as one caregiver stated, “my husband was on dialysis for 20 years, that’s hardly end stage.”
Making Sense of the Prognostic Enigma
Conceptualizing Levels of Kidney Function.
Participants believed that terms should enable understanding of their level of kidney function, how this compared with normal function, and progression of disease. Some suggested that stages of CKD had to be more clearly defined, similar to stages of cancer, and that numeric values (e.g., GFR) be qualified (e.g., early, moderate, or advanced, or lower, middle, or higher) to facilitate comprehension about severity. “What is this level, is that good or bad? I didn’t really understand.” Some were confused with the use of percentages in describing kidney function. “So if it has to be (an eGFR) over 60 do you consider 60 100%? What is the 100%? I’ve heard up to (an GFR of) 115 so when you do a percentage it might be information that’s not accurate.”
Correlating with Symptoms and Effect on Life.
Terms such as GFR and CKD stages sometimes lacked meaning as they did not appear to correlate consistently with the presence or severity of symptoms: “I was in stage 5 and I still didn’t have any symptoms.” One caregiver stated, “I could see vomiting and all the symptoms, but I didn’t understand how that was connected (with the GFR).”
Predicting Progression and Need for Intervention.
Participants felt that terms should give an indication of their disease trajectory and when they may need interventions including medications, dialysis, or a kidney transplant. In reference to CKD stages, some realized that “there was really no set amount of time that each stage went through,” and that they would only be useful if the stages corresponded with “different stages of treatment.” Some were aware that GFR was used in decision making about commencing dialysis: “you know your GFR is five, you need to get on dialysis.”
Mobilizing Self-Management
Confronting Reality.
Some accepted that terms such as “ESKD” were necessarily “damaging and painful to the patient” so they would reflect its seriousness. For some, it forced them to understand the severity, irreversibility, and incurability of kidney disease, and to have realistic expectations about their prognosis.
Enabling Planning and Preparation.
Terms such as “stage” of CKD, “kidney failure,” and “GFR” were perceived by some participants to provide opportunities for preparing for the future. Despite “causing anxiety,” such terms were regarded as “beneficial in that they give you a sense of planning” and making a decision about dialysis or kidney transplant.
Taking Ownership for Change.
Terms that caused alarm were believed by some participants to encourage patients to “get their act together” and take responsibility for their health, prompting them to modify behaviors to slow progression of kidney disease. For example, “predialysis” instigated lifestyle changes to delay commencement of dialysis: “if you’re saying predialysis, in my mind that says I’m about to go on dialysis but then I’m going to wonder is there something I can do to keep me from going on dialysis.” They compared this with diabetes: “when you are told you’re prediabetic, you go crazy, change your diet!” The CKD stages were also regarded as useful for those who were “goal-oriented,” as they would be motivated to “do things to keep me moving to stage 2.” Terms such as “renal” meant that kidney disease “becomes something that’s not your own… it’s a textbook.”
Learning Medical Terms for Self-Advocacy.
Some acknowledged that medical terminology could be “intimidating” but urged that patients had a responsibility to learn the language as “this is your life.” It was unavoidable and some commented that patients were “much more capable of shaping ourselves to their [doctors’] language.” They suggested that patients needed to be proactive in seeking explanations of the terms from their doctor.
Educating Others.
Simple terms such as “kidney” rather than “renal” were considered important for communicating with family members, and the community, about their disease and treatment, including living donor kidney transplantation. “My brother, he gave me my kidney, he’s not medical either. We are having a kidney transplant, not a renal. It’s a kidney.” Participants stated that words such as “end stage” could inadvertently frighten others, cause them to assume “you’re probably really sick so they associate you in a way like you must be dying or something and it gets taken out of proportion,” and diminish access to support.
Discussion
Terms for kidney health that were confusing, ambiguous, and obsolete led to frustration, and caused distress in patients and caregivers. The shock and trauma in patients were compounded by terms that triggered fear of the unknown, signaled imminent death or need for dialysis, undermined their sense of hope for treatment, and connoted failure and end stage of personhood. Patients emphasized the need for consistent terms to enable them to understand their level of kidney function and prognosis, particularly in terms of symptomology and predicting the need for interventions, including medications and KRT. Others believed that the use of direct and serious terms compelled patients to confront the risks and reality of kidney disease, plan and prepare for managing kidney disease, and take ownership for enacting lifestyle changes. Some felt they needed to learn and understand medical terms so they could advocate for themselves. They urged for the use of simple and accessible terms to educate family and those in their social networks, and to promote awareness and knowledge among patients, and the general community.
There were no clear differences in attitudes or beliefs about terms on the basis of demographics (including educational attainment) and clinical characteristics, except by country. Patients in the United States noted that the term “ESKD” was used as a billing code to qualify for Medicare reimbursement for dialysis, and speculated that this was the reason for the use of a serious or severe term. The term “low clearance” was specifically mentioned by patients in the United Kingdom, which was thought to be a confusing term. There were polarized opinions on negative-sounding terms such as “ESKD” or “predialysis.” Some believed this caused depression that prevented acceptance of the disease, or instigated a paralyzing fear that inhibited coping, self-management, and decision making. Some patients feared and wanted to avoid dialysis because it signified they were in the final stage of the disease, and expected that dialysis would constrain and limit their lives; and thus expressed an aversion to being labeled as “predialysis.” In contrast, others felt these terms urged and prompted lifestyle changes, and enabled them to prepare for treatment. However, these opinions did not appear to link with specific participant characteristics.
The use of confusing and inappropriate terms and its detrimental effects, from the patient perspective, have also been demonstrated in other medical disciplines including oncology (31), cardiology (12), infectious disease (10), psychiatry (16), pediatrics (11,30), dermatology (16), urology (13,14), and anesthesiology (32). For example, in tuberculosis, there have been calls to remove “judgmental and criminalizing” terms such as “suspect” and “defaulter,” because they place blame for the disease and adverse outcomes on the patient (10). Similarly, in psychocutaneous medicine, terms such as “trichotillomania,” “delusions of parasitosis,” and “neurotic excoriation” have been identified to be offensive and insensitive to patients, potentially becoming barriers to accessing treatment (16). The few studies of kidney disease have shown that terminology can be difficult to understand and cause confusion (15,21). Our findings reveal how common terms used for kidney health are perceived by some patients to be ambiguous, and may effect a patient’s identity, emotional and psychosocial wellbeing, and undermine their ability to monitor and manage their health. Also, it has been recognized among nephrologists that terms such as predialysis are ambiguous and poorly defined (33).
Studies suggest that patients want to be informed about their diagnosis early, despite the fear and distress of receiving the diagnosis. However, some clinicians may be reluctant to emotionally overwhelm patients with information about their diagnosis and prognosis (24,34). Patient-provider communication requires careful consideration of terms and how these may be interpreted by patients and caregivers, as well as education and counseling to manage the potential consequences. Also, effective shared decision making is on the basis of common understanding of the language used.
Our study was conducted across three countries, and generated in-depth and nuanced insights about patient and caregiver perspectives on terms used to describe kidney health. We achieved reasonable diversity in demographic and clinical characteristics; however, there are some potential limitations. We did not include non-English-speaking participants given our focus on terms used in the English language, and 63% were white. We acknowledge that 30% of the participants had received a kidney transplant; however, there were no notable differences in perspectives on nomenclature compared with patients without a kidney transplant. There were relatively few older adults (7% were aged over 70 years) who participated; therefore, the transferability of the findings to the older population is uncertain. Of note, 89% of the participants had a high level of education (i.e., completed 12th grade), and we recognize that we may not have captured how patients with lower educational attainment and health literacy comprehend, and react to, terms for kidney health. We acknowledge that there is an association of ethnicity and educational status in health literacy. Despite this, confusion and misinterpretation of terms were apparent in our study, which highlights the critical role of terminology in health literacy.
The Institute of Medicine defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” (35). It refers to communication among patients, health professionals, social networks, and research, to promote patient understanding and engagement in care (29). Patients with CKD have limited health literacy (36–38), which has been found to be associated with increased mortality and hospitalization, reduced access to treatment (including transplantation), and worsened quality of life (29,38–40). Another challenge is that patients may be asymptomatic until they have kidney failure. The use of terms that are not easily understood, imprecise in meaning, and cause catastrophizing, whereby patients perceive the term (e.g., ESKD) to mean they are near death or without treatment options, can prevent patients from seeking and comprehending relevant health information, and from making decisions. It can be difficult to disentangle terminology and communication, as both contribute to the lack of awareness and understanding. Given the link between poor understanding of terminology and low functional health literacy (41), there is potential for appropriate and consistent terminology to increase patient participation and engagement in care (42). Thus, ensuring that terminology is patient-centered provides an opportunity to improve health literacy in this population. Also, the findings highlight the complexity of hope (43), and the opportunities to cultivate hope and realistic expectations with prognostic information (44). On the basis of our findings, we outline suggestions for terminology in Table 3.With the increased availability of and access to health information (e.g., electronic health records and research publications) facilitated by the Internet and technology, we suggest that key terms to describe and characterize kidney health should be clear, patient-centered, and consistent to improve communication and satisfaction with care. There is a need for more research in patient-clinician communication in the context of CKD (45). The KDIGO Consensus Conference on Nomenclature for Kidney Function and Disease was recently convened to refine and revise nomenclature used to describe various aspects pertaining to kidney health (46). The findings from this study informed the discussion at the conference. Efforts are underway to work with researchers, clinicians, journal editors and managers, and patients and caregivers to develop a patient-centered glossary of terms, to improve consistency of use in research, practice, and policy (46).
Suggestions and implications for terminology for kidney health for use in patient-facing contexts
Some common terms to describe kidney health are obscure and imprecise. This can lead to extreme and unresolved trauma and guilt that impairs capacities for information-seeking, decision making, managing treatment, and coping. There is a need for consistent and meaningful terms, education and counseling regarding the use of terms that mitigate against psychosocial harms, and communication strategies that support coping, decision making about treatment, and self-management. The development and use of patient-centered terminology for kidney health may improve patient autonomy, satisfaction, and outcomes.
Disclosures
Dr. S. Anumudu attended and participated in KDIGO conferences where travel was paid/reimbursed by KDIGO. Dr. K.-U. Eckardt reports consultancy agreements with Akebia, Bayer, Genzyme, Johnson & Johnson, and Vifor; research funding from Amgen, AstraZeneca, Bayer, Fresenius, Genzyme, Shire, and Vifor; honoraria from Akebia, Bayer, Genzyme, and Vifor; and Scientific Advisory or Membership of Kidney International and British Medical Journal (Editorial Boards), and the Swiss National Science Foundation and German Research Foundation (Scientific Advisory Boards), outside the submitted work. Dr. M. Jadoul reports personal fees, nonfinancial support, and other funding from AstraZeneca; grants and personal fees from Merck (MSD); grants from Amgen, Roche, Otsuka, and Janssen-Cilag; and personal fees from Astellas, Abbvie, Fresenius, Vifor Med. Care Renal Pharma., and Menarini, paid to his institution. Mr. D.M. White owned CareDx stock in 2019 and currently owns Artara Therapeutics stock; and reports that his great-grandchildren own Amgen stock. Dr. D.C. Wheeler reports personal fees and nonfinancial support from AstraZeneca; and personal fees from Amgen, Boehringer Ingelheim, Bayer, GlaxoSmithKline, Janssen, MSD, Napp, Mundipharma, Reata, and Vifor Fresenius, outside the submitted work. Dr. W.C. Winkelmayer reports personal fees from Akebia, AstraZeneca, Bayer, MSD, Janssen, and Vifor FMC Renal Pharma (including Relypsa), outside the submitted work. All remaining authors have nothing to disclose.
Funding
Ms. T. Gutman and Dr. N. Scholes-Robertson are supported by National Health and Medical Research Council Program grant ID1092957, and Dr. A. Tong is supported by National Health and Medical Research Council Fellowship grant ID1106716. Dr. J.I. Shen is supported by National Institutes of Health grant K23DK103972. The study was funded by the Kidney Disease Improving Global Outcomes Network.
Supplemental Material
This article contains the following supplemental material online at http://cjasn.asnjournals.org/lookup/suppl/doi:10.2215/CJN.00900120/-/DCSupplemental.
Supplemental Table 1. Focus groups contributing to each theme.
Acknowledgments
We thank all of the patients and caregivers who gave their time to participate in the study. We also acknowledge Stacy L. Christiansen and Nijsje M. Dorman for providing feedback on the manuscript.
The funding organizations had no role in the design and conduct of the study, the collection, management, analysis, and interpretation of the data, or the preparation, review, or approval of the manuscript. Dr. Michel Jadoul cochairs KDIGO. Dr. Andrew Levey cochaired the KDIGO Consensus Conference on Nomenclature for Kidney Function and Disease, which is related to this work.
Footnotes
Published online ahead of print. Publication date available at www.cjasn.org.
See related Patient Voice, “Nephrology Nomenclature: How to Accelerate Patient Anxiety, Suppress Engagement, and Mire the Advance of Medical Innovation,” and editorial, “Considering Our Patients and Tempering Terminology,” on pages 907–908 and 914–916, respectively.
- Received January 21, 2020.
- Accepted April 16, 2020.
- Copyright © 2020 by the American Society of Nephrology
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