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Original ArticlesChronic Kidney Disease
Open Access

Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health

Allison Tong, Andrew S. Levey, Kai-Uwe Eckardt, Samaya Anumudu, Cristina M. Arce, Amanda Baumgart, Louese Dunn, Talia Gutman, Tess Harris, Liz Lightstone, Nicole Scholes-Robertson, Jenny I. Shen, David C. Wheeler, David M. White, Martin Wilkie, Jonathan C. Craig, Michel Jadoul and Wolfgang C. Winkelmayer
CJASN July 2020, 15 (7) 937-948; DOI: https://doi.org/10.2215/CJN.00900120
Allison Tong
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
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Andrew S. Levey
3Division of Nephrology, Tufts Medical Center, Boston, Massachusetts
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Kai-Uwe Eckardt
4Medical Department, Division of Nephrology and Internal Intensive Care Medicine, Charité – Universitätsmedizin Berlin, Berlin, Germany
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Samaya Anumudu
5Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, Texas
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Cristina M. Arce
6Dallas Renal Group, Dallas, Texas
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Amanda Baumgart
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
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Louese Dunn
7Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
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Talia Gutman
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
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Tess Harris
8Polycystic Kidney Disease International, London, UK
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Liz Lightstone
9Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, UK
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Nicole Scholes-Robertson
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
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Jenny I. Shen
10Division of Nephrology and Hypertension, Harbor-UCLA Medical Center, Torrance, California
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David C. Wheeler
11Centre for Nephrology, University College London, London, UK
12George Institute for Global Health, Sydney, New South Wales, Australia
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David M. White
13Center for Health Action and Policy, The Rogosin Institute, New York, New York
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Martin Wilkie
7Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
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Jonathan C. Craig
14College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia
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Michel Jadoul
15Department of Nephrology, Cliniques Universitaires Saint-Luc, Université Catholique de Louvain, Brussels, Belgium
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Wolfgang C. Winkelmayer
5Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, Texas
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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).

Figure 1.
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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).

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Table 1.

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.

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Table 2.

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).

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Table 3.

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.

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.

Supplemental Material

This article contains the following supplemental material online at http://cjasn.asnjournals.org/lookup/suppl/doi:10.2215/CJN.00900120/-/DCSupplemental.

Questions Guide.

Supplemental Table 1. Focus groups contributing to each theme.

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

References

  1. ↵
    1. Grams ME,
    2. Yang W,
    3. Rebholz CM,
    4. Wang X,
    5. Porter AC,
    6. Inker LA,
    7. Horwitz E,
    8. Sondheimer JH,
    9. Hamm LL,
    10. He J,
    11. Weir MR,
    12. Jaar BG,
    13. Shafi T,
    14. Appel LJ,
    15. Hsu CY; CRIC Study Investigators
    : Risks of adverse events in advanced CKD: The chronic renal insufficiency cohort (CRIC) study. Am J Kidney Dis 70: 337–346, 2017 pmid:28366517
    OpenUrlPubMed
  2. ↵
    1. Go AS,
    2. Chertow GM,
    3. Fan D,
    4. McCulloch CE,
    5. Hsu CY
    : Chronic kidney disease and the risks of death, cardiovascular events, and hospitalization. N Engl J Med 351: 1296–1305, 2004 pmid:15385656
    OpenUrlCrossRefPubMed
  3. ↵
    1. de Jager DJ,
    2. Grootendorst DC,
    3. Jager KJ,
    4. van Dijk PC,
    5. Tomas LM,
    6. Ansell D,
    7. Collart F,
    8. Finne P,
    9. Heaf JG,
    10. De Meester J,
    11. Wetzels JF,
    12. Rosendaal FR,
    13. Dekker FW
    : Cardiovascular and noncardiovascular mortality among patients starting dialysis. JAMA 302: 1782–1789, 2009 pmid:19861670
    OpenUrlCrossRefPubMed
  4. ↵
    1. Levey AS,
    2. Coresh J
    : Chronic kidney disease. Lancet 379: 165–180, 2012 pmid:21840587
    OpenUrlCrossRefPubMed
  5. ↵
    1. Farrugia D,
    2. Mahboob S,
    3. Cheshire J,
    4. Begaj I,
    5. Khosla S,
    6. Ray D,
    7. Sharif A
    : Malignancy-related mortality following kidney transplantation is common. Kidney Int 85: 1395–1403, 2014 pmid:24257690
    OpenUrlCrossRefPubMed
  6. ↵
    1. Levin A,
    2. Tonelli M,
    3. Bonventre J,
    4. Coresh J,
    5. Donner JA,
    6. Fogo AB,
    7. Fox CS,
    8. Gansevoort RT,
    9. Heerspink HJL,
    10. Jardine M,
    11. Kasiske B,
    12. Köttgen A,
    13. Kretzler M,
    14. Levey AS,
    15. Luyckx VA,
    16. Mehta R,
    17. Moe O,
    18. Obrador G,
    19. Pannu N,
    20. Parikh CR,
    21. Perkovic V,
    22. Pollock C,
    23. Stenvinkel P,
    24. Tuttle KR,
    25. Wheeler DC,
    26. Eckardt KU; ISN Global Kidney Health Summit participants
    : Global kidney health 2017 and beyond: A roadmap for closing gaps in care, research, and policy. Lancet 390: 1888–1917, 2017 pmid:28434650
    OpenUrlCrossRefPubMed
  7. ↵
    1. Thomas R,
    2. Kanso A,
    3. Sedor JR
    : Chronic kidney disease and its complications. Prim Care 35: 329–344, vii, 2008 pmid:18486718
    OpenUrlCrossRefPubMed
  8. ↵
    1. Narva AS,
    2. Norton JM,
    3. Boulware LE
    : Educating patients about CKD: The path to self-management and patient-centered care. Clin J Am Soc Nephrol 11: 694–703, 2016 pmid:26536899
    OpenUrlAbstract/FREE Full Text
  9. ↵
    1. Vandecasteele SJ,
    2. Kurella Tamura M
    : A patient-centered vision of care for ESRD: Dialysis as a bridging treatment or as a final destination? J Am Soc Nephrol 25: 1647–1651, 2014 pmid:24833125
    OpenUrlAbstract/FREE Full Text
  10. ↵
    1. Zachariah R,
    2. Harries AD,
    3. Srinath S,
    4. Ram S,
    5. Viney K,
    6. Singogo E,
    7. Lal P,
    8. Mendoza-Ticona A,
    9. Sreenivas A,
    10. Aung NW,
    11. Sharath BN,
    12. Kanyerere H,
    13. van Soelen N,
    14. Kirui N,
    15. Ali E,
    16. Hinderaker SG,
    17. Bissell K,
    18. Enarson DA,
    19. Edginton ME
    : Language in tuberculosis services: Can we change to patient-centred terminology and stop the paradigm of blaming the patients? Int J Tuberc Lung Dis 16: 714–717, 2012 pmid:22613683
    OpenUrlCrossRefPubMed
  11. ↵
    1. Hirschfeld-Dicker L,
    2. Samuel RD,
    3. Tiram Vakrat E,
    4. Dubnov-Raz G
    : Preferred weight-related terminology by parents of children with obesity. Acta Paediatr 108: 712–717, 2019 pmid:30118160
    OpenUrlCrossRefPubMed
  12. ↵
    1. Aronis KN,
    2. Edgar B,
    3. Lin W,
    4. Martins MAP,
    5. Paasche-Orlow MK,
    6. Magnani JW
    : Health literacy and atrial fibrillation: Relevance and future directions for patient-centred care. Eur Cardiol 12: 52–57, 2017 pmid:28936235
    OpenUrlPubMed
  13. ↵
    1. Homma Y
    : Hypersensitive bladder: A solution to confused terminology and ignorance concerning interstitial cystitis. Int J Urol 21[Suppl 1]: 43–47, 2014 pmid:24807494
    OpenUrlCrossRefPubMed
  14. ↵
    1. Meijlink JM
    : Patient-centred standardization in interstitial cystitis/bladder pain syndrome-a PLEA. Transl Androl Urol 4: 499–505, 2015 pmid:26816849
    OpenUrlPubMed
  15. ↵
    1. Ladin K,
    2. Buttafarro K,
    3. Hahn E,
    4. Koch-Weser S,
    5. Weiner DE
    : “End-of-Life care? I’m not going to worry about that yet.” health literacy gaps and end-of-life planning among elderly dialysis patients. Gerontologist 58: 290–299, 2018 pmid:28329829
    OpenUrlCrossRefPubMed
  16. ↵
    1. Walling HW,
    2. Swick BL
    : Psychocutaneous syndromes: A call for revised nomenclature. Clin Exp Dermatol 32: 317–319, 2007 pmid:17397356
    OpenUrlCrossRefPubMed
  17. ↵
    1. Wernick M,
    2. Hale P,
    3. Anticich N,
    4. Busch S,
    5. Merriman L,
    6. King B,
    7. Pegg T
    : A randomised crossover trial of minimising medical terminology in secondary care correspondence in patients with chronic health conditions: Impact on understanding and patient reported outcomes. Intern Med J 46: 596–601, 2016 pmid:26968750
    OpenUrlCrossRefPubMed
  18. ↵
    1. Rix EF,
    2. Barclay L,
    3. Stirling J,
    4. Tong A,
    5. Wilson S
    : ‘Beats the alternative but it messes up your life’: Aboriginal people’s experience of haemodialysis in rural Australia. BMJ Open 4: e005945, 2014 pmid:25231493
    OpenUrlAbstract/FREE Full Text
  19. ↵
    1. Fage-Butler AM,
    2. Nisbeth Jensen M
    : Medical terminology in online patient-patient communication: Evidence of high health literacy? Health Expect 19: 643–653, 2016 pmid:26287945
    OpenUrlPubMed
  20. ↵
    1. Guo M,
    2. Quensell M,
    3. Chang A,
    4. Miyamura J,
    5. Sentell T
    : Understanding of key obstetric quality terminology by Asian and Pacific Islander subgroups: Implications for patient engagement and health equity. Matern Child Health J 22: 1543–1549, 2018 pmid:30006728
    OpenUrlCrossRefPubMed
  21. ↵
    1. Roberti J,
    2. Cummings A,
    3. Myall M,
    4. Harvey J,
    5. Lippiett K,
    6. Hunt K,
    7. Cicora F,
    8. Alonso JP,
    9. May CR
    : Work of being an adult patient with chronic kidney disease: A systematic review of qualitative studies. BMJ Open 8: e023507, 2018 pmid:30181188
    OpenUrlAbstract/FREE Full Text
  22. ↵
    1. Teasdale EJ,
    2. Leydon G,
    3. Fraser S,
    4. Roderick P,
    5. Taal MW,
    6. Tonkin-Crine S
    : Patients’ experiences after CKD diagnosis: A meta-ethnographic study and systematic review. Am J Kidney Dis 70: 656–665, 2017 pmid:28764920
    OpenUrlPubMed
  23. ↵
    1. Costantini L,
    2. Beanlands H,
    3. McCay E,
    4. Cattran D,
    5. Hladunewich M,
    6. Francis D
    : The self-management experience of people with mild to moderate chronic kidney disease. Nephrol Nurs J 35: 147–155; quiz 156, 2008pmid:18472683
    OpenUrlPubMed
  24. ↵
    1. Greer RC,
    2. Crews DC,
    3. Boulware LE
    : Challenges perceived by primary care providers to educating patients about chronic kidney disease. J Ren Care 38: 174–181, 2012 pmid:23176576
    OpenUrlCrossRefPubMed
  25. ↵
    1. Tong A,
    2. Manns B,
    3. Hemmelgarn B,
    4. Wheeler DC,
    5. Evangelidis N,
    6. Tugwell P,
    7. Crowe S,
    8. Van Biesen W,
    9. Winkelmayer WC,
    10. O’Donoghue D,
    11. Tam-Tham H,
    12. Shen JI,
    13. Pinter J,
    14. Larkins N,
    15. Youssouf S,
    16. Mandayam S,
    17. Ju A,
    18. Craig JC; SONG-HD Investigators
    : Establishing core outcome domains in hemodialysis: Report of the Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) consensus workshop. Am J Kidney Dis 69: 97–107, 2017 pmid:27497527
    OpenUrlCrossRefPubMed
  26. ↵
    1. Tong A,
    2. Sainsbury P,
    3. Craig J
    : Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care 19: 349–357, 2007 pmid:17872937
    OpenUrlCrossRefPubMed
  27. ↵
    1. Tong A,
    2. Winkelmayer WC,
    3. Craig JC
    : Qualitative research in CKD: An overview of methods and applications. Am J Kidney Dis 64: 338–346, 2014 pmid:24768353
    OpenUrlCrossRefPubMed
  28. ↵
    1. Kitzinger J
    : Qualitative research. Introducing focus groups. BMJ 311: 299–302, 1995 pmid:7633241
    OpenUrlFREE Full Text
  29. ↵
    1. Dageforde LA,
    2. Cavanaugh KL
    : Health literacy: Emerging evidence and applications in kidney disease care. Adv Chronic Kidney Dis 20: 311–319, 2013 pmid:23809283
    OpenUrlCrossRefPubMed
  30. ↵
    1. Gittelman MA,
    2. Mahabee-Gittens EM,
    3. Gonzalez-del-Rey J
    : Common medical terms defined by parents: Are we speaking the same language? Pediatr Emerg Care 20: 754–758, 2004 pmid:15502657
    OpenUrlCrossRefPubMed
  31. ↵
    1. O’Connell RL,
    2. Hartridge-Lambert SK,
    3. Din N,
    4. St John ER,
    5. Hitchins C,
    6. Johnson T
    : Patients’ understanding of medical terminology used in the breast clinic. Breast 22: 836–838, 2013 pmid:23523178
    OpenUrlPubMed
  32. ↵
    1. Fields AM,
    2. Freiberg CS,
    3. Fickenscher A,
    4. Shelley KH
    : Patients and jargon: Are we speaking the same language? J Clin Anesth 20: 343–346, 2008 pmid:18761241
    OpenUrlCrossRefPubMed
  33. ↵
    1. Hsu CY,
    2. Chertow GM
    : Chronic renal confusion: Insufficiency, failure, dysfunction, or disease. Am J Kidney Dis 36: 415–418, 2000 pmid:10922323
    OpenUrlCrossRefPubMed
  34. ↵
    1. Tiu H,
    2. Fagerlin A,
    3. Roney M,
    4. Kerr E,
    5. Ojo A,
    6. Rothman E,
    7. Nunes JW
    : Provider perspectives on chronic kidney disease diagnosis delivery. Clin Nephrol 89: 205–213, 2018 pmid:29057734
    OpenUrlCrossRefPubMed
  35. ↵
    1. IOM
    : Institute of the Medicine. Roundtable on Health Literacy; Board on Population Health and Public Health Practice. Facilitating State Health Exchange Communication Through the Use of Health Literate Practices: Workshop Summary, Washington, DC, Institute of the Medicine, 2012
  36. ↵
    1. Taylor DM,
    2. Bradley JA,
    3. Bradley C,
    4. Draper H,
    5. Johnson R,
    6. Metcalfe W,
    7. Oniscu G,
    8. Robb M,
    9. Tomson C,
    10. Watson C,
    11. Ravanan R,
    12. Roderick P; ATTOM Investigators
    : Limited health literacy in advanced kidney disease. Kidney Int 90: 685–695, 2016 pmid:27521115
    OpenUrlPubMed
  37. ↵
    1. Morony S,
    2. Flynn M,
    3. McCaffery KJ,
    4. Jansen J,
    5. Webster AC
    : Readability of written materials for CKD patients: A systematic review. Am J Kidney Dis 65: 842–850, 2015 pmid:25661679
    OpenUrlCrossRefPubMed
  38. ↵
    1. Fraser SD,
    2. Roderick PJ,
    3. Casey M,
    4. Taal MW,
    5. Yuen HM,
    6. Nutbeam D
    : Prevalence and associations of limited health literacy in chronic kidney disease: A systematic review. Nephrol Dial Transplant 28: 129–137, 2013 pmid:23222414
    OpenUrlCrossRefPubMed
  39. ↵
    1. Taylor DM,
    2. Bradley JA,
    3. Bradley C,
    4. Draper H,
    5. Dudley C,
    6. Fogarty D,
    7. Fraser S,
    8. Johnson R,
    9. Leydon GM,
    10. Metcalfe W,
    11. Oniscu GC,
    12. Robb M,
    13. Tomson C,
    14. Watson CJE,
    15. Ravanan R,
    16. Roderick P; ATTOM investigators
    : Limited health literacy is associated with reduced access to kidney transplantation. Kidney Int 95: 1244–1252, 2019 pmid:30952457
    OpenUrlPubMed
  40. ↵
    1. Dodson S,
    2. Osicka T,
    3. Huang L,
    4. McMahon LP,
    5. Roberts MA
    : Multifaceted assessment of health literacy in people receiving dialysis: Associations with psychological stress and quality of life. J Health Commun 21[Suppl 2]: 91–98, 2016 pmid:27683959
    OpenUrlCrossRefPubMed
  41. ↵
    1. Donovan-Kicken E,
    2. Mackert M,
    3. Guinn TD,
    4. Tollison AC,
    5. Breckinridge B,
    6. Pont SJ
    : Health literacy, self-efficacy, and patients’ assessment of medical disclosure and consent documentation. Health Commun 27: 581–590, 2012 pmid:22107084
    OpenUrlCrossRefPubMed
  42. ↵
    1. Gambier Y,
    2. Van Doorslaer L
    1. Cabre MT
    : Terminology and translation. In: Handbook of Translation Studies, edited by Gambier Y, Van Doorslaer L, Amsterdam, The Netherlands, John Benjamins Publishing Company, 2010, pp 356–365
  43. ↵
    1. Davison SN,
    2. Simpson C
    : Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. BMJ 333: 886, 2006 pmid:16990294
    OpenUrlAbstract/FREE Full Text
  44. ↵
    1. Curtis JR,
    2. Engelberg R,
    3. Young JP,
    4. Vig LK,
    5. Reinke LF,
    6. Wenrich MD,
    7. McGrath B,
    8. McCown E,
    9. Back AL
    : An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer. J Palliat Med 11: 610–620, 2008 pmid:18454614
    OpenUrlCrossRefPubMed
  45. ↵
    1. Schell JO,
    2. Green JA,
    3. Tulsky JA,
    4. Arnold RM
    : Communication skills training for dialysis decision-making and end-of-life care in nephrology. Clin J Am Soc Nephrol 8: 675–680, 2013 pmid:23143502
    OpenUrlAbstract/FREE Full Text
  46. ↵
    KDIGO: Consensus conference on nomenclature for kidney function and disease. 2019. Available at: https://kdigo.org/conferences/nomenclature/. Accessed July 16, 2019
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Clinical Journal of the American Society of Nephrology: 15 (7)
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Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health
Allison Tong, Andrew S. Levey, Kai-Uwe Eckardt, Samaya Anumudu, Cristina M. Arce, Amanda Baumgart, Louese Dunn, Talia Gutman, Tess Harris, Liz Lightstone, Nicole Scholes-Robertson, Jenny I. Shen, David C. Wheeler, David M. White, Martin Wilkie, Jonathan C. Craig, Michel Jadoul, Wolfgang C. Winkelmayer
CJASN Jul 2020, 15 (7) 937-948; DOI: 10.2215/CJN.00900120

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Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health
Allison Tong, Andrew S. Levey, Kai-Uwe Eckardt, Samaya Anumudu, Cristina M. Arce, Amanda Baumgart, Louese Dunn, Talia Gutman, Tess Harris, Liz Lightstone, Nicole Scholes-Robertson, Jenny I. Shen, David C. Wheeler, David M. White, Martin Wilkie, Jonathan C. Craig, Michel Jadoul, Wolfgang C. Winkelmayer
CJASN Jul 2020, 15 (7) 937-948; DOI: 10.2215/CJN.00900120
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Keywords

  • 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
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