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American Journal of Kidney Diseases

Shared Decision Making Among Older Adults With Advanced CKD

  • Rebecca Frazier
    Correspondence
    Address for Correspondence: Rebecca Frazier, MD, 633 N St Clair, 18th Floor, Chicago, IL 60611.
    Affiliations
    Division of Nephrology and Hypertension, Department of Medicine, Center for Translational Metabolism and Health, Institute for Public Health and Medicine, Chicago, Illinois

    Jesse Brown Veterans Administration Medical Center, Chicago, Illinois
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  • Sarah Levine
    Affiliations
    William B. Schwartz MD Division of Nephrology, Tufts University School of Medicine, Boston, Massachusetts
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  • Thalia Porteny
    Affiliations
    Research on Ethics, Aging, and Community Health (REACH Lab) and Departments of Occupational Therapy and Community Health, Tufts University, Medford, Massachusetts
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  • Hocine Tighiouart
    Affiliations
    Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Tufts University School of Medicine, Boston, Massachusetts

    Tufts Clinical and Translational Science Institute, Tufts University, Tufts University School of Medicine, Boston, Massachusetts
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  • John B. Wong
    Affiliations
    Division of Clinical Decision Making, Tufts Medical Center, Tufts University School of Medicine, Boston, Massachusetts
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  • Tamara Isakova
    Affiliations
    Division of Nephrology and Hypertension, Department of Medicine, Center for Translational Metabolism and Health, Institute for Public Health and Medicine, Chicago, Illinois
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  • Susan Koch-Weser
    Affiliations
    Department of Public Health and Community Medicine, Tufts University School of Medicine, Boston, Massachusetts
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  • Elisa J. Gordon
    Affiliations
    Department of Surgery–Division of Transplantation, Center for Health Services and Outcomes Research, Center for Bioethics and Medical Humanities, Northwestern University Feinberg School of Medicine, Chicago, Illinois
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  • Daniel E. Weiner
    Affiliations
    William B. Schwartz MD Division of Nephrology, Tufts University School of Medicine, Boston, Massachusetts
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  • Keren Ladin
    Affiliations
    Research on Ethics, Aging, and Community Health (REACH Lab) and Departments of Occupational Therapy and Community Health, Tufts University, Medford, Massachusetts
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Open AccessPublished:March 26, 2022DOI:https://doi.org/10.1053/j.ajkd.2022.02.017

      Rationale & Objective

      Older adults with advanced chronic kidney disease (CKD) face difficult decisions about dialysis initiation. Although shared decision making (SDM) can help align patient preferences and values with treatment options, the extent to which older patients with CKD experience SDM remains unknown.

      Study Design

      A cross-sectional analysis of patient surveys examining decisional readiness, treatment options education, care partner support, and SDM.

      Setting & Participants

      Adults aged 70 years or older from Boston, Chicago, San Diego, or Portland (Maine) with nondialysis advanced CKD.

      Predictors

      Decisional readiness factors, treatment options education, and care partner support.

      Outcomes

      Primary: SDM measured by the 9-item Shared Decision Making Questionnaire (SDM-Q-9) instrument, with higher scores reflecting greater SDM. Exploratory: Factors associated with SDM.

      Analytical Approach

      We used multivariable linear regression models to examine the associations between SDM and predictors, controlling for demographic and health factors.

      Results

      Among 350 participants, mean age was 78 ± 6 years, 58% were male, 13% identified as Black, and 48% had diabetes. Mean SDM-Q-9 score was 52 ± 28. SDM item agreement ranged from 41% of participants agreeing that “my doctor and I selected a treatment option together” to 73% agreeing that “my doctor told me that there are different options for treating my medical condition.” In multivariable analysis adjusted for demographic characteristics, lower estimated glomerular filtration rate, and diabetes, being “well informed” and “very well informed” about kidney treatment options, having higher decisional certainty, and attendance at a kidney treatment options class were independently associated with higher SDM-Q-9 scores.

      Limitations

      The cross-sectional study design limits the ability to make temporal associations between SDM and the predictors.

      Conclusions

      Many older patients with CKD do not experience SDM when making dialysis decisions, emphasizing the need for greater access to and delivery of education for individuals with advanced CKD.

      Index Words

      Older adults with advanced kidney disease face difficult treatment decisions. Dialysis offers uncertain survival benefits but has significant quality of life implications. Shared decision making (SDM) may help patients choose treatment options that best align with their goals and values. We performed a cross-sectional analysis among older adults with advanced kidney disease to examine SDM in nephrology clinics using the 9-item Shared Decision Making Questionnaire. We found that SDM was suboptimal, with a mean questionnaire score of 52 (possible scores of 0-100). Being “well informed” and “very well informed” about kidney treatment options, having higher decisional certainty, and attendance at a kidney treatment options class were associated with greater SDM. Our research highlights the need to improve SDM for older adults facing dialysis decisions.
      Older adults are the fastest-growing demographic category receiving dialysis in the United States.
      • Johansen K.L.
      • Chertow G.M.
      • Foley R.N.
      • et al.
      US Renal Data System 2020 Annual Data Report: epidemiology of kidney disease in the United States.
      Importantly, dialysis and conservative management of advanced chronic kidney disease (CKD) appear to be associated with similar survival among older adults, particularly those aged 80 years or older, whereas quality of life may vary between the 2 treatment approaches.
      • Verberne W.R.
      • Geers A.B.
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      • Vincent H.H.
      • van Delden J.J.
      • Bos W.J.
      Comparative survival among older adults with advanced kidney disease managed conservatively versus with dialysis.
      • O’Connor N.R.
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      Conservative management of end-stage renal disease without dialysis: a systematic review.
      • Foote C.
      • Kotwal S.
      • Gallagher M.
      • Cass A.
      • Brown M.
      • Jardine M.
      Survival outcomes of supportive care versus dialysis therapies for elderly patients with end-stage kidney disease: a systematic review and meta-analysis.
      • Engelbrecht B.L.
      • Kristian M.J.
      • Inge E.
      • et al.
      Does conservative kidney management offer a quantity or quality of life benefit compared to dialysis? A systematic review.
      The burdens of dialysis can be substantial, especially among elderly patients, who commonly have significant comorbidities and poor functional status.
      • Schmidt R.J.
      Informing our elders about dialysis: is an age-attuned approach warranted?.
      ,
      • Cook W.L.
      • Jassal S.V.
      Functional dependencies among the elderly on hemodialysis.
      Older adults with CKD may also have different values than their younger counterparts and are more likely to prioritize quality of life, decreasing caregiver burden, and preserving autonomy over survival.
      • Visser A.
      • Dijkstra G.J.
      • Kuiper D.
      • et al.
      Accepting or declining dialysis: considerations taken into account by elderly patients with end-stage renal disease.
      ,
      • Ashby M.
      • op’t Hoog C.
      • Kellehear A.
      • et al.
      Renal dialysis abatement: lessons from a social study.
      Accordingly, more so than with many health care decisions for which there is a clear survival benefit, dialysis decisions for older adults are preference-sensitive.
      Shared decision making (SDM) may help optimize decisional outcomes.
      • Saran R.
      • Robinson B.
      • Abbott K.C.
      • et al.
      US Renal Data System 2018 Annual Data Report: epidemiology of kidney disease in the United States.
      SDM is a collaborative discussion-based model that engages patients, clinicians, and often care partners in the decisional domains of agenda setting, information sharing, deliberation, and decision making.
      • Charles C.
      • Gafni A.
      • Whelan T.
      Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model.
      • Makoul G.
      • Clayman M.L.
      An integrative model of shared decision making in medical encounters.
      • Amir N.
      • McCarthy H.J.
      • Tong A.
      A working partnership: a review of shared decision-making in nephrology.
      With SDM, the physician and patient are involved in the decision-making process: the physician shares pertinent medical information and the patient and care partners share their values and concerns. Patients and their clinicians make a decision together, one that balances medical risks and benefits with patient preferences.
      • Charles C.
      • Gafni A.
      • Whelan T.
      Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model.
      SDM addresses decisional needs and enhances decisional outcomes with complex medical choices for which there is not one clearly superior option.
      • Stacey D.
      • Légaré F.
      • Boland L.
      • et al.
      20th Anniversary Ottawa Decision Support Framework: part 3 overview of systematic reviews and updated framework.
      ,
      • Hughes T.M.
      • Merath K.
      • Chen Q.
      • et al.
      Association of shared decision-making on patient-reported health outcomes and healthcare utilization.
      SDM increases patient engagement with the decision-making process and helps patients make medical choices that better align with their values.
      • Hoffmann T.C.
      • Légaré F.
      • Simmons M.B.
      • et al.
      Shared decision making: what do clinicians need to know and why should they bother?.
      Nephrology professional organizations recommend the use of SDM to discuss with patients the available treatment options for advanced CKD.
      • Moss A.H.
      Revised dialysis clinical practice guideline promotes more informed decision-making.
      Renal Physicians Association
      Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. Clinical Practice Guideline.
      KDOQI Clinical Practice Guideline for Hemodialysis Adequacy: 2015 update.
      However, many nephrologists struggle to implement SDM, especially with older adults facing dialysis decisions.
      • Schell J.O.
      • Patel U.D.
      • Steinhauser K.E.
      • Ammarell N.
      • Tulsky J.A.
      Discussions of the kidney disease trajectory by elderly patients and nephrologists: a qualitative study.
      ,
      • Hussain J.A.
      • Flemming K.
      • Murtagh F.E.
      • Johnson M.J.
      Patient and health care professional decision-making to commence and withdraw from renal dialysis: a systematic review of qualitative research.
      Previous qualitative studies reveal that many older adults do not perceive dialysis initiation as a choice, feel disengaged from the decision-making process, and experience regret after starting dialysis.
      • Harwood L.
      • Clark A.M.
      Understanding pre-dialysis modality decision-making: a meta-synthesis of qualitative studies.
      • Ladin K.
      • Lin N.
      • Hahn E.
      • Zhang G.
      • Koch-Weser S.
      • Weiner D.E.
      Engagement in decision-making and patient satisfaction: a qualitative study of older patients’ perceptions of dialysis initiation and modality decisions.
      • Stringer S.
      • Baharani J.
      Why did I start dialysis? A qualitative study on views and expectations from an elderly cohort of patients with end-stage renal failure starting haemodialysis in the United Kingdom.
      Lack of understanding about treatment options may also contribute to decision dissatisfaction, as studies have found that poor medical knowledge is associated with decreased feelings of self-efficacy.
      • Holm A.
      • Berland A.
      • Severinsson E.
      Older patients’ involvement in shared decision-making—a systematic review.
      ,
      • Cassidy B.P.
      • Getchell L.E.
      • Harwood L.
      • Hemmett J.
      • Moist L.M.
      Barriers to education and shared decision making in the chronic kidney disease population: a narrative review.
      Gaps remain in quantifying the extent of SDM experienced by older adults who are nearing the point at which dialysis decisions are needed. Few quantitative studies have evaluated SDM in discussions about advanced CKD treatment options that take place in routine clinical practice. Studies that address this topic have mostly included younger patients, did not use validated measures, were limited geographically, or were retrospective, evaluating treatment decision making in individuals who had already initiated dialysis, thus excluding those who chose conservative management.
      • Ghodsian S.
      • Ghafourifard M.
      • Ghahramanian A.
      Comparison of shared decision making in patients undergoing hemodialysis and peritoneal dialysis for choosing a dialysis modality.
      • Schellartz I.
      • Ohnhaeuser T.
      • Mettang T.
      • Scholten N.
      Information about different treatment options and shared decision making in dialysis care - a retrospective survey among hemodialysis patients.
      • Robinski M.
      • Mau W.
      • Wienke A.
      • Girndt M.
      Shared decision-making in chronic kidney disease: A retrospection of recently initiated dialysis patients in Germany.
      Increased knowledge about SDM in nephrology clinics will help identify areas for improvement, implement interventions to increase SDM, and track SDM use over time.
      To improve understanding of SDM among older adults with advanced CKD, we examined SDM in nephrology clinics from 4 geographically diverse sites across the United States using baseline data from the Decision Aid for Renal Therapy (DART) Trial.

      Methods

      Study Design and Sample

      In 2018-2019, we recruited 400 patients and randomized 363 of these patients from nephrology clinics in greater Boston, Portland (Maine), San Diego, and Chicago to participate in the DART Trial (ClinicalTrials.gov identifier NCT03522740), a randomized controlled trial investigating the effectiveness of a web-based decision aid compared with routine in-person education in reducing decisional conflict.
      • Ladin K.
      • Neckermann I.
      • D’Arcangelo N.
      • et al.
      Advance care planning in older adults with CKD: patient, care partner, and clinician perspectives.
      ,
      • Koch-Weser S.
      • Porteny T.
      • Rifkin D.E.
      • et al.
      Patient education for kidney failure treatment: a mixed-methods study.
      Eligible patients had nondialysis advanced CKD and were aged 70 years or older, spoke English, and were established in a nephrology clinic. To determine eligibility by estimated glomerular filtration rate (eGFR), one of the most recent 2 eGFR assessments had to be <30 mL/min/1.73 m2 with the other <35 mL/min/1.73 m2. Scheduled kidney transplant or dialysis initiation were exclusion criteria. All participants provided written informed consent, and the Tufts Health Sciences Institutional Review Board approved and served as single institutional review board for this study.
      Our study is a cross-sectional, observational study of data derived from the baseline survey of the DART Trial. Research coordinators administered the survey in person after participants provided informed consent but before randomization into the DART Trial; therefore, participants had not yet received the intervention. Of the 363 patients who participated in the DART Trial, 350 answered questions from the 9-item Shared Decision Making Questionnaire (SDM-Q-9) survey and were included in this study.

      Outcome

      The primary outcome was patient-perceived SDM measured using the validated, widely used SDM-Q-9, which consists of 9 statements about the decision-making process (shown in Fig 2).
      • Kriston L.
      • Scholl I.
      • Hölzel L.
      • Simon D.
      • Loh A.
      • Härter M.
      The 9-item Shared Decision Making Questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample.
      The core components of SDM addressed in the SDM-Q-9 include agenda setting (including identifying a decision to be made and clarifying the degree to which patients want to be involved in the decision-making process), information sharing (including medical information from the nephrologist and discussion of patient values), deliberation, and decision making, with input from the clinician and patient.
      • Charles C.
      • Gafni A.
      • Whelan T.
      Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model.
      ,
      • Makoul G.
      • Clayman M.L.
      An integrative model of shared decision making in medical encounters.
      ,
      • Toupin-April K.
      • Barton J.L.
      • Fraenkel L.
      • et al.
      OMERACT development of a core domain set of outcomes for shared decision-making interventions.
      Item responses were assessed using a 6-point Likert scale from 0 (strongly disagree) to 5 (strongly agree). The overall score is standardized to a scale from 0 to 100 points by calculating the average score among the 9 item responses and multiplying this number by 20. Higher scores indicate greater SDM. We evaluated the SDM-Q-9 using the COSMIN criteria.
      • Gagnier J.J.
      • Lai J.
      • Mokkink L.B.
      • Terwee C.B.
      COSMIN reporting guideline for studies on measurement properties of patient-reported outcome measures.
      Psychometric testing demonstrated high reliability, validity, and acceptance in English and German versions.
      • Kriston L.
      • Scholl I.
      • Hölzel L.
      • Simon D.
      • Loh A.
      • Härter M.
      The 9-item Shared Decision Making Questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample.
      ,
      • Scholl I.
      • Koelewijn-van Loon M.
      • Sepucha K.
      • et al.
      Measurement of shared decision making - a review of instruments.
      ,
      • Alvarez K.
      • Wang Y.
      • Alegria M.
      • et al.
      Psychometrics of shared decision making and communication as patient centered measures for two language groups.
      As an exploratory analysis, we investigated the factors associated with SDM, examining demographic characteristics, health-related factors, decisional readiness characteristics, and education and support.

      Covariates

      The Ottawa Decision Support Framework was used to guide the analysis. The framework suggests that increased decisional needs, if not adequately addressed, affect patients’ decision making and perceived SDM.
      • Stacey D.
      • Légaré F.
      • Boland L.
      • et al.
      20th Anniversary Ottawa Decision Support Framework: part 3 overview of systematic reviews and updated framework.
      To assess decisional needs, we examined decisional readiness characteristics, defined as patients’ perceptions about their treatment options knowledge, their certainty about their decision, and the quality of their medical care. We also examined kidney treatment options class attendance, care partner support, and demographic and health factors as decisional needs that may affect SDM (Fig 1).
      • Loiselle M.C.
      • Michaud C.
      • O’Connor A.
      Decisional needs assessment to help patients with advanced chronic kidney disease make better dialysis choices.
      Figure thumbnail gr1
      Figure 1Decisional needs and supports affecting decisional outcomes based on the Ottawa Decision Support Framework.
      • Stacey D.
      • Légaré F.
      • Boland L.
      • et al.
      20th Anniversary Ottawa Decision Support Framework: part 3 overview of systematic reviews and updated framework.
      To examine decisional readiness characteristics, we used 3 items adapted from the DECISIONS survey.
      • Zikmund-Fisher B.J.
      • Couper M.P.
      • Singer E.
      • et al.
      The DECISIONS study: a nationwide survey of United States adults regarding 9 common medical decisions.
      One item asked how informed participants felt about their kidney disease treatment options as scored on a 4-point Likert scale from “not at all informed” to “very well informed.” The second question asked if participants had decided on a treatment if their kidneys failed, with a choice of “yes” or “no” answers. The third question asked how certain participants were about their choice on a 10-point scale, with 1 indicating “not at all sure” and 10 indicating “completely sure/certain.” A single item assessed affective forecasting, querying about the ability to imagine life with hemodialysis, using a 4-point Likert scale from “very easy time picturing what to expect” to “absolutely no idea what to expect.”
      • Allen L.A.
      • McIlvennan C.K.
      • Thompson J.S.
      • et al.
      Effectiveness of an intervention supporting shared decision making for destination therapy left ventricular assist device: the DECIDE-LVAD randomized clinical trial.
      The Canadian Health Care Evaluation Project (CANHELP) Lite Questionnaire was used to assess satisfaction with medical care, with scores ranging from 0 to 100 and higher scores reflecting greater satisfaction with care.
      • Heyland D.K.
      • Jiang X.
      • Day A.G.
      • Cohen S.R.
      The development and validation of a shorter version of the Canadian Health Care Evaluation Project Questionnaire (CANHELP Lite): a novel tool to measure patient and family satisfaction with end-of-life care.
      To assess other decisional needs, participants were asked if they had attended a kidney treatment options education class and had a care partner. Health factors included estimated glomerular filtration rate (eGFR) reported in the local electronic health record (all sites used the 2009 4-variable CKD Epidemiology Collaboration [CKD-EPI] equation), urinary albumin-creatinine ratio, and comorbid conditions. Self-reported health was assessed using a single-item “health slider” from the EuroQol EQ-5D questionnaire, in which participants rated their overall health on a 0-100 scale, with higher numbers representing better health.
      EuroQol--a new facility for the measurement of health-related quality of life.
      Demographic characteristics included self-reported age, sex, self-identified race, marital status, and educational attainment.

      Statistical Analysis

      Bivariate associations between the variables listed above and SDM quartiles were examined using χ2 tests for categorical variables and analysis of variance for continuous variables. To assess the cross-sectional associations between decisional factors and SDM, we used a multivariable linear regression model that included demographic and health characteristics, decisional readiness, attendance at a class on treatment options, and involvement of an identified care partner. Two exploratory models used backward selection to examine which modifiable factors contributed most to SDM. In each model, age, sex, and race were fixed, whereas clinical characteristics (diabetes, urinary albumin-creatinine ratio, eGFR, and health slider) were included in the selection process along with either decisional readiness factors or options class attendance and care partner presence. We verified that there was no violation of normality or constant variance assumption in the outcome models.
      Missing data for covariates are shown in Table S1. To minimize the loss of power when fitting multivariable models and assuming data were missing at random, we used multiple imputation with chained equations to create 20 multiple complete datasets. The imputation model included all covariates in Table 1. Linear regression models were fitted for each imputed dataset and averaged using Rubin’s rule.
      • Little R.J.A.
      • Rubin D.B.
      Statistical Analysis with Missing Data.
      All analyses were performed using SAS Enterprise Guide (version 7.14; SAS).
      Table 1Sample Characteristics by SDM-Q-9 Quartiles
      CharacteristicTotal (N = 350; score: 0.0-100.0)Quartile 1 (n = 87 [25%]; score: 0.0-31.2)Quartile 2 (n = 86 [25%]; score: 33.3-51.2)Quartile 3 (n = 90 [26%]; score: 53.3-77.4)Quartile 4 (n = 87 [25%]; score: 77.5-100.0)P for trend
      Demographic
      Age, y77.6 ± 5.877.1 ± 5.676.4 ± 6.278.2 ± 5.278.6 ± 6.00.02
      Female sex148 (42.3%)44 (51%)42 (49%)31 (34%)31 (36%)0.01
      Race0.4
       White270 (77.8%)72 (83%)65 (77%)65 (74%)68 (78%)
       Black45 (13.0%)5 (6%)15 (18%)13 (15%)12 (14%)
       Other32 (9.2%)10 (12%)5 (6%)10 (11%)7 (8%)
      Current marital status0.2
       Never married33 (9.4%)12 (14%)9 (11%)6 (7%)6 (6.9%)
       Currently married194 (55.4%)50 (58%)43 (50%)53 (59%)48 (55%)
       Widowed71 (20.3%)12 (14%)19 (22%)18 (20%)22 (25%)
       Divorced/separated52 (14.9%)13 (15%)15 (17%)13 (14%)11 (13%)
      Education0.4
       High school or less72 (20.6%)15 (17%)18 (21%)16 (18%)23 (27%)
       Some college/technical school99 (28.4%)25 (29%)20 (23%)29 (32%)25 (29%)
       College graduate90 (25.8%)28 (32%)23 (27%)17 (19%)22 (26%)
       Postgraduate88 (25.2%)19 (22%)25 (29%)28 (31%)16 (19%)
      Health
      eGFR, mL/min/1.73 m222.6 ± 7.324.4 ± 6.422.4 ± 6.621.3 ± 8.422.2 ± 7.30.04
      UACR, mg/g232.5 (51.3-829.9)237.8 (41.5-791.5)157.1 (48.4-747.0)371.8 (71.6-1,097.6)212.1 (64.4-784.0)0.7
      Diabetes165 (47.6%)37 (43%)39 (45%)45 (51%)44 (51%)0.2
      CHD137 (39.5%)32 (37%)38 (44%)32 (36%)35 (41%)0.9
      PVD49 (14.1%)11 (13%)14 (16%)12 (14%)12 (14%)0.9
      Kidney transplant8 (2.3%)2 (2%)2 (2%)0 (0%)4 (5%)0.5
      Health slider: personal health assessment75.0 (60.0-85.0)75.0 (60.0-85.0)70.0 (50.0-80.0)75.0 (65.0-90.0)80.0 (60.0-90.0)0.002
      Decisional readiness
      Decision uncertainty: informed of kidney disease treatment options<0.001
       Not at all informed38 (10.9%)14 (16%)12 (14%)6 (7%)6 (7%)
       A little bit informed109 (31.2%)36 (41%)33 (38%)20 (23%)20 (23%)
       Pretty well informed157 (45.0%)32 (37%)36 (42%)47 (53%)42 (48%)
       Very well informed45 (12.9%)5 (6%)5 (6%)16 (18%)19 (22%)
      Decision uncertainty
       Decided treatment option if kidneys stop working123 (35.3%)14 (16%)21 (24%)46 (52%)42 (49%)<0.001
       Sure how you want to treat your kidney disease5.0 (1.0-8.0)2.0 (1.0-4.0)3.0 (1.0-7.0)6.0 (3.0-8.0)6.0 (1.0-9.0)<0.001
      Affective forecasting: envisioning life with HD0.05
       Very easy picturing what to expect45 (12.9%)9 (10%)7 (8%)12 (13%)17 (20%)
       Somewhat of an idea what to expect114 (32.8%)21 (24%)30 (35%)36 (40%)27 (31%)
       Difficult picturing what to expect73 (21.0%)17 (20%)22 (26%)20 (22%)14 (16%)
       Absolutely no idea what to expect116 (33.3%)40 (46%)26 (31%)22 (24%)28 (33%)
      CANHELP score: satisfaction with care85.3 (73.8-96.4)83.9 (75.0-95.2)80.0 (72.4-92.9)79.7 (69.7-92.1)96.1 (82.8-100.0)<0.001
      Education and support
       Care partner151 (43.1%)32 (37%)39 (45%)40 (44%)40 (46%)0.3
       Attended kidney treatment options class92 (26.3%)9 (10%)17 (20%)37 (41%)29 (33%)<0.001
      Values presented as count (%), mean ± standard deviation, or median (interquartile range). Not all categorical values add up to 100% because of rounding and multiple selections. SDM-Q-9 scores for quartiles: quartile 1, 0.0-31.2; quartile 2, 33.3-51.2; quartile 3, 53.3-77.4; quartile 4, 77.5-100.0. Abbreviations: CANHELP, Canadian Health Care Evaluation Project; CHD, coronary heart disease; eGFR, estimated glomerular filtration rate; HD, hemodialysis; PVD, peripheral vascular disease; SDM-Q-9, 9-item Shared Decision Making Questionnaire; UACR, urinary albumin-creatinine ratio.

      Results

      Participant Characteristics

      Of 363 individuals randomized in the DART trial, 350 completed the baseline SDM-Q-9 survey and were included in the analysis. Mean age was 77.6 ± 5.8 (SD) years, 58% were male, 13% identified as Black, and 48% had diabetes (Table 1). Overall, 20.6% of participants had a high school education or less, 28.4% had some college or post–high school education, 25.8% had a college degree, and 25.2% had a postgraduate degree. Mean eGFR was 22.6 ± 7.3 mL/min/1.73 m2, and median urinary albumin-creatinine ratio was 233 (IQR, 51-830) mg/g. Among the 350 participants, 44 (12.6%) had CKD stage 3, 260 (74.3%) had CKD stage 4, and 46 (13.1%) had CKD stage 5.

      Primary Outcome: SDM-Q-9 Scores and Item Responses

      Figure 2 shows the distribution of SDM-Q-9 scores by item. Scores ranged from 0 to 100, with the mean score 52.5 ± 27.8. The lowest agreement was with “my doctor and I selected a treatment option together” (mean score of 2.1 ± 1.7 on the 6-point scale, which ranged from 0 to 5), with 41% somewhat, strongly, or completely agreeing with the statement. The highest agreement (73%) was with the statement “my doctor told me that there are different options for treating my medical condition” (mean score, 3.2 ± 1.6). Overall, there was higher agreement with questions asking about agenda setting, such as “my doctor made clear a decision needs to be made” (57% agreement), and information sharing, such as “my doctor helped me understand all the information” (62% agreement). There was lower agreement with items addressing deliberation, such as “my doctor and I thoroughly weighed the different treatment options” (48% agreement), and decision making, such as “my doctor and I reached an agreement on how to proceed” (50% agreement).
      Figure thumbnail gr2
      Figure 2Distribution of 9-item Shared Decision Making Questionnaire item scores. Abbreviation: MD, my doctor.

      Exploratory Analyses: Characteristics Associated With SDM

      Table 1 presents the bivariate associations of SDM-Q-9 score quartiles with demographic, health, decisional readiness, and education and support variables. Among demographic factors, male sex (P = 0.01) and older age (P = 0.02) were significantly associated with higher SDM-Q-9 score quartiles. Among clinical factors, lower eGFR (P = 0.04) and better self-reported health (P = 0.002) were associated with higher SDM-Q-9 scores. Among decisional readiness characteristics, patients who were more informed about kidney disease treatment options (P < 0.001), those who had already decided on a treatment option (P < 0.001), and those who were more certain about their decision (P < 0.001) had significantly higher SDM-Q-9 scores. Additionally, higher satisfaction with medical care (ie, CANHELP score) was significantly associated with higher SDM-Q-9 scores (P < 0.001). Among education and support factors, prior kidney treatment options class attendance was significantly associated with SDM (P < 0.001).
      Table 2 shows the multivariable associations between SDM-Q-9 scores and the variables in Table 1. After adjustment, Black race (vs White; β = 9.6 [95% CI, 0.6-18.6]), diabetes (β = 6.9 [95% CI, 0.5-13.4]), being “well informed” (β = 11.6 [95% CI, 0.5-22.6]) and “very well informed” (β = 14.9 [95% CI, 2.3-27.5]) about kidney treatment options, higher decisional certainty (β = 1.1 [95% CI, 0.0-2.2]), and kidney treatment options class attendance (β = 8.2 [95% CI, 0.7-15.7]) were significantly associated with higher SDM. Table 3 displays results of the backward selection process for decisional readiness variables, controlling for age, sex, and race. Participants who were “very well informed” about kidney disease treatment options (β = 19.6 [95% CI, 6.7-32.5]) and who had increased decision certainty (β = 1.7 [95% CI, 0.7-2.7]) had significantly higher SDM-Q-9 scores. In Table 4, when using backward selection for education and support variables, only attendance at a kidney treatment options class was associated with higher SDM (β = 14.7 [95% CI, 8.3-21.2]).
      Table 2Factors Associated With Shared Decision Making, Full Model
      Factorβ (95% CI)P
      Demographic
      Age, per 10 y older5.4 (−0.1 to 10.8)0.05
      Female sex−2.0 (−8.2 to 4.3)0.5
      Race
       Black9.6 (0.6 to 18.6)0.04
       Other5.6 (−4.8 to 16.0)0.3
       WhiteReference
      High school education or less vs some college or advanced degree2.6 (−4.9 to 10.2)0.5
      Health
      Diabetes6.9 (0.5 to 13.4)0.04
      UACR, per doubling−0.6 (−1.9 to 0.7)0.4
      eGFR, per 5 mL/min/1.73 m2 greater−2.2 (−4.6 to 0.2)0.07
      Health slider personal health assessment, per 10 points greater1.4 (−0.2 to 3.0)0.08
      Decisional readiness
      Decision uncertainty: informed about the options for treating kidney disease
       Not at all informedReference
       A bit informed7.3 (−3.3 to 18.0)0.2
       Well informed11.6 (0.5 to 22.6)0.04
       Very well informed19.5 (5.6 to 33.4)0.006
      Decision uncertainty: sure how you want to treat your kidney disease, per 1 point greater1.1 (0.0 to 2.2)0.05
      Affective forecasting: envisioning life with hemodialysis
       Easy to picture−0.6 (−11.5 to 10.3)0.9
       Somewhat of an idea−0.9 (−9.0 to 7.1)0.8
       Difficult picturing−2.6 (−11.4, to 6.1)0.6
       Absolutely no ideaReference
      CANHELP score: satisfaction with care, per 10 points greater1.7 (−0.7 to 4.0)0.2
      Education and support
      Care partner−2.1 (−8.2 to 3.9)0.5
      Attended kidney treatment options class8.2 (0.7 to 15.7)0.03
      N = 350, missing data imputed using multiple imputation for relevant covariates. Abbreviations: CANHELP, Canadian Health Care Evaluation Project; eGFR, estimated glomerular filtration rate; UACR, urinary albumin-creatinine ratio.
      Table 3Association of Decisional Readiness with Shared Decision Making
      Factorsβ (95% CI)P
      Age, per 10 y older3.6 (−1.5 to 8.6)0.2
      Female sex−3.5 (−9.4 to 2.4)0.2
      Race
       Black10.7 (2.1 to 19.4)0.02
       Other1.8 (−8.0 to 11.5)0.7
       WhiteReference
      eGFR, per 5 mL/min/1.73 m2 greater−2.0 (−4.1 to 0.1)0.06
      Health slider personal health assessment, per 10 points greater1.3 (−0.2 to 2.8)0.09
      Decision uncertainty: informed about the options for treating kidney disease
       Not at all informedReference
       A bit informed4.9 (−5.2 to 14.9)0.3
       Well informed8.2 (−2.0 to 18.5)0.1
       Very well informed19.6 (6.7 to 32.5)0.003
      Decision uncertainty: sure how you want to treat your kidney disease, per 1 point greater1.7 (0.7 to 2.7)<0.001
      N = 350, missing data imputed using multiple imputation for relevant covariates. Abbreviations: eGFR, estimated glomerular filtration rate.
      Table 4Association of Education and Support with Shared Decision Making
      Factorβ (95% CI)P
      Age, per 10 y older4.8 (−0.2 to 9.7)0.06
      Female sex−6.0 (−11.9 to −0.2)0.04
      Race
       Black9.9 (1.3 to 18.6)0.03
       Other1.4 (−8.5 to 11.4)0.8
       WhiteReference
      eGFR, per 5 mL/min/1.73 m2 greater−2.1 (−4.1 to −0.1)0.04
      Attended kidney treatment options class14.7 (8.3 to 21.2)<0.001
      N = 350, missing data imputed using multiple imputation for relevant covariates. Abbreviations: eGFR, estimated glomerular filtration rate.

      Discussion

      Older adults with advanced CKD face decision complexity as they weigh the benefits and harms of available treatment options. In this study of older adults with advanced CKD receiving care from a nephrologist, we found that SDM was suboptimal. In our study, only 76 patients of 350 (22%) scored ≥80% on the SDM-Q-9, corresponding to strongly or completely agreeing with the SDM-Q-9 statements, despite having advanced CKD and established nephrology care. Our research highlights the need to improve SDM for older adults facing dialysis decisions.
      In our study, patients rated items related to deliberation and decision making lowest, indicating that patients experienced these aspects of SDM infrequently. These low scores are likely due to both physician and patient factors. Patients with higher eGFR in our study were less likely to experience SDM. Clinicians may not have discussed dialysis or other treatment options with patients with CKD stage 3 or early CKD stage 4 and stable kidney function. Additionally, when these discussions occur, patients may be reluctant to discuss their preferences with their clinician. Prior studies have shown that patients feel a power imbalance between themselves and the physician in the decision-making process, given their lack of medical knowledge and desire to be compliant with medical advice.
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      Patients report feeling timid in a clinical encounter, which limits their engagement and prevents effective discussion.
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      Increasing patient knowledge about the treatment options, adequate preparation for the discussion, and emphasizing the importance of patients’ input, especially about their personal values, may help patients engage in SDM.
      • Joseph-Williams N.
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      Power imbalance prevents shared decision making.
      Certain physician decision-making styles may also hinder deliberation and decision making. Some physicians use the paternalistic approach when discussing complex topics, which prioritizes the physician’s opinion and discourages patient input. Others use the informative approach, which seeks to educate patients without advocating for a certain treatment, to avoid unduly influencing the patient.
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      Characterizing approaches to dialysis decision making with older adults: a qualitative study of nephrologists.
      Both of these approaches reduce collaboration and may not lead to satisfactory decisional outcomes. Although we did not directly evaluate the nature of physician and patient interactions, reliance on paternalistic or informative approaches may have contributed to low scores in the deliberation and decision-making domains in our study. Provider training on SDM methods could assist clinicians in engaging in SDM more systematically. There have been increasing numbers of SDM training programs in medical schools and continuing medical education, and these programs commonly improve clinicians’ knowledge, attitudes, and skills regarding SDM.
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      Further study on optimal training methods is needed.
      Decision aids may help clinicians and patients navigate the decision-making process. Patient-facing decision aids often use written materials or web-based formats, which support SDM and address decisional needs.
      • Davis J.L.
      • Davison S.N.
      Hard choices, better outcomes: a review of shared decision-making and patient decision aids around dialysis initiation and conservative kidney management.
      Studies of decision aids in advanced kidney disease found that they improved patient knowledge, advanced decisional readiness, and increased value-based decisions by encouraging patients to consider their own preferences and values.
      • Davis J.L.
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      ,
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      Additionally, decision aids helped to engage patients in the decision-making process and assisted in patient–clinician communication.
      • Stacey D.
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      • et al.
      Decision aids for people facing health treatment or screening decisions.
      They are also feasible to use in the clinical encounter; in a Cochrane systematic review, decision aids extended the consultation by a median of only 2.6 minutes.
      • Stacey D.
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      • Lewis K.
      • et al.
      Decision aids for people facing health treatment or screening decisions.
      Thus, decision aids may be a valuable tool to facilitate SDM in nephrology clinics.
      Additionally, clarifying patients’ decision-making preferences early in treatment options discussions can help tailor SDM to the individual.
      • Ladin K.
      • Frazier R.S.
      The elusive promise of shared decision making: a step forward.
      In our study, 67% agreed that their physician asked how they wanted to be involved in making the decision, an important aspect of SDM. Some patients prioritize physicians’ input and prefer a more passive role in the decision-making process, whereas patients who are confident and autonomous may want to make the decision without much physician input.

      Finderup J, Jensen JKD, Lomborg K. Developing and pilot testing a shared decision-making intervention for dialysis choice. J Ren Care. Published online April 17, 2018. doi:10.1111/jorc.12241

      ,
      • Barbour J.B.
      • Rintamaki L.S.
      • Ramsey J.A.
      • Brashers D.E.
      Avoiding health information.
      Furthermore, some patients may not want to participate in SDM. Identifying patients’ decision-making styles may help physicians to optimally support the patient.
      In our study, those who were more certain about their kidney disease treatment options had higher levels of SDM. Given the cross-sectional analysis, the explanation for this correlation is unclear. Patients with more confidence and information about their kidney disease treatment choices may have had more effective interactions with their provider, leading to higher rates of SDM. Alternatively, experiencing SDM may lead to greater knowledge and decreased anxiety about the treatment outcomes, leading to increased decisional certainty. Further study is needed to determine what determines increased decisional certainty in this situation and how it relates to SDM.
      Among potentially modifiable factors in our study, kidney failure options, class attendance, and being “very well informed” about kidney disease treatment options were significantly associated with SDM, suggesting that education is central to the decision-making process. Several studies show that patient education about advanced CKD can significantly affect patients’ clinical outcomes, such as reducing mortality, increasing home dialysis selection, and reducing hemodialysis catheter use.
      • Lacson Jr., E.
      • Wang W.
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      Effects of a nationwide predialysis educational program on modality choice, vascular access, and patient outcomes.
      ,
      • Wu I.W.
      • Wang S.Y.
      • Hsu K.H.
      • et al.
      Multidisciplinary predialysis education decreases the incidence of dialysis and reduces mortality--a controlled cohort study based on the NKF/DOQI guidelines.
      Research also suggests that patient education can reduce decisional needs and facilitate decision making.
      • Harwood L.
      • Clark A.M.
      Understanding pre-dialysis modality decision-making: a meta-synthesis of qualitative studies.
      ,
      • Loiselle M.C.
      • Michaud C.
      • O’Connor A.
      Decisional needs assessment to help patients with advanced chronic kidney disease make better dialysis choices.
      ,
      • Cassidy B.P.
      • Harwood L.
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      • Smith M.
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      • Moist L.M.
      Educational support around dialysis modality decision making in patients with chronic kidney disease: qualitative study.
      ,
      • Chen N.H.
      • Lin Y.P.
      • Liang S.Y.
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      • Wang T.J.
      Conflict when making decisions about dialysis modality.
      In one study of 590 German hemodialysis recipients, those who stated that they were informed about both hemodialysis and peritoneal dialysis had significantly higher SDM-Q-9 scores compared with patients who stated that they were not informed.
      • Schellartz I.
      • Ohnhaeuser T.
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      Information about different treatment options and shared decision making in dialysis care - a retrospective survey among hemodialysis patients.
      Improving the participation in and quality of advanced kidney disease options education is imperative to improve decisional outcomes.
      Despite the importance of education on SDM and clinical outcomes, only 26% of participants in our study attended an educational class. Prior research also shows poor rates and effectiveness of advanced CKD options education in routine clinical practice.
      • Koch-Weser S.
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      • Rifkin D.E.
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      Patient education for kidney failure treatment: a mixed-methods study.
      In surveys of dialysis recipients, more than one third stated that they were not given information about treatment options other than in-center hemodialysis.
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      • Davies S.
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      Patients report difficulty understanding the treatment options, a perceived lack of choice, and a need to make rushed decisions without thoroughly weighing their options.
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      Barriers to education and shared decision making in the chronic kidney disease population: a narrative review.
      ,
      • Morton R.L.
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      • Webster A.C.
      The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies.
      Earlier referral to education classes, education tailored to patients’ health literacy and values, and frequent discussions about options may better inform patients of their treatment choices.
      • Harwood L.
      • Clark A.M.
      Understanding pre-dialysis modality decision-making: a meta-synthesis of qualitative studies.
      ,
      • Loiselle M.C.
      • Michaud C.
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      Decisional needs assessment to help patients with advanced chronic kidney disease make better dialysis choices.
      ,
      • Saggi S.J.
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      ,
      • Collister D.
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      Increased knowledge about treatment options may increase patients’ confidence in their decision-making capabilities and increase their engagement in SDM.
      In our study, the presence of care partners was not associated with SDM. Prior research has demonstrated the importance of family and care partners to facilitate SDM because they help patients process the decision and provide emotional support.
      • Harwood L.
      • Clark A.M.
      Understanding pre-dialysis modality decision-making: a meta-synthesis of qualitative studies.
      ,
      • Loiselle M.C.
      • Michaud C.
      • O’Connor A.
      Decisional needs assessment to help patients with advanced chronic kidney disease make better dialysis choices.
      However, other studies have shown that caregiver influence can also result in a higher degree of decisional regret.
      • Saeed F.
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      • Davison S.N.
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      • Berkhout-Byrne N.
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      • Mallat M.J.K.
      • et al.
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      In a survey of 295 dialysis recipients, most (60.7%) regretted their decision to start dialysis, and 13.9% reported that they chose dialysis because of their family’s preference rather than their own.
      • Davison S.N.
      End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.
      Thus, care partner support may increase SDM and patient satisfaction if care partners reinforce the patients’ own wishes but may be harmful if care partners’ preferences are contradictory to the patients’ preferences. In this study, we evaluated whether an individual identified a care partner and did not assess the degree of the care partners’ involvement in decision making.
      This study has several strengths. The DART Trial was a randomized controlled trial that recruited patients from 4 sites across the United States. The patients were geographically diverse and attended academic and community nephrology clinics. The study enrolled adults aged 70 years or older and allowed for a focused examination of SDM among older individuals, which often differs from discussions with younger patients. In addition, the participants had non–dialysis-dependent advanced CKD, and the study therefore included patients who might choose conservative care or dialysis or receive a kidney transplant. This study provides insights into how older adults experience SDM in routine clinical practice when discussing advanced CKD treatment options.
      This study has limitations. Study enrollment was limited to English-speaking individuals who had enrolled in a randomized controlled trial, and thus the study was subject to selection bias, which may limit the generalizability of the findings. Additionally, the survey data may be affected by response and recall biases. As a cross-sectional study, the temporal directionality of examined relationships is unclear. Although most participants had CKD stage 4/5, the prognosis was heterogeneous. A substantial number of older adults with late CKD stage 3, early CKD stage 4, or stable eGFR may not yet have had treatment discussions with their clinician despite being under the care of a nephrologist. Moreover, we were unable to capture many factors that may affect SDM, including patients’ motivation to participate in SDM, their decisional satisfaction, and aspects of their nephrology care, such as the SDM training of the clinician, clinicians’ decision-making styles, frequency of clinic visits by the participant, and available supportive services. Additionally, we did not examine the mechanisms linking education to SDM, and thus it is unclear exactly how education and SDM relate. Given these limitations, we cannot make definitive conclusions about SDM in nephrology clinics.
      In summary, many older patients with advanced CKD do not engage in SDM despite existing guidelines.
      • Moss A.H.
      Revised dialysis clinical practice guideline promotes more informed decision-making.
      Renal Physicians Association
      Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. Clinical Practice Guideline.
      KDOQI Clinical Practice Guideline for Hemodialysis Adequacy: 2015 update.
      Patients who reported being well informed about treatment options and attended kidney failure treatment options classes reported higher SDM, underscoring the importance of patient education for SDM. Continuing to teach SDM in nephrology training programs, using decision aids that support SDM in clinic, and preparing clinicians to engage in SDM may improve decisional outcomes for patients with advanced CKD.

      Article Information

      Authors’ Full Names and Academic Degrees

      Rebecca Frazier, MD, Sarah Levine, BA, Thalia Porteny, PhD, MSc, Hocine Tighiouart, MS, John B. Wong, MD, Tamara Isakova, MD, MMSc, Susan Koch-Weser, ScD, Elisa J. Gordon, PhD, MPH, Daniel E. Weiner, MD, MS, and Keren Ladin, PhD, MSc.

      Authors’ Contributions

      Designed the current study: KL, DEW, EJG, SK-W, TI, JBW; collected the DART Trial data: SL, TP; analyzed the data: HT; interpreted the data: KL, DEW, EJG, SK-W, TI, JBW, RF. 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 with documentation in the literature if appropriate.

      Support

      Research reported in this work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Program Award (CDR-2017C1-6297) to Drs Ladin and Weiner. Dr Isakova was supported by National Heart, Lung, and Blood Institute grant K24HL150235. Dr Frazier was supported by National Institute of Diabetes and Digestive and Kidney Diseases grant P30DK114857 and a National Kidney Foundation of Illinois Young Investigator Grant. The funders did not have a role in study design, data collection, analysis, reporting, or the decision to submit for publication.

      Financial Disclosure

      Dr Isakova received consulting honorariums from Akebia Therapeutics, Inc. Dr Weiner has received consulting honoraria from Akebia Therapeutics (paid to Dialysis Clinic, Inc) and Cara Therapeutics. The remaining authors declare that they have no relevant financial interests.

      Disclaimer

      The views presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of PCORI, its Board of Governors, or Methodology Committee, or the position or policy of the Department of Veterans Affairs or the US government.

      Data Sharing

      The data underlying this article cannot be shared publicly to protect the privacy of the individuals who participated in the study.

      Prior Presentation

      Aspects of this work were presented in abstract form on October 19, 2021, at the Society for Medical Decison Making virtual conference, and on November 4, 2021, at the American Society of Nephrology Kidney Week 2021 virtual conference.

      Peer Review

      Received November 3, 2021. Evaluated by 3 external peer reviewers and a statistician, with editorial input from an Acting Editor-in-Chief (Editorial Board Member David W. Johnson, MBBS, FRACP, PhD). Accepted in revised form Feb 9, 2022. The involvement of an Acting Editor-in-Chief to handle the peer-review and decision-making processes was to comply with AJKD’s procedures for potential conflicts of interest for editors, described in the Information for Authors & Journal Policies.

      Supplementary Material

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