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Clinical Research
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Health Outcome Priorities of Older Adults with Advanced CKD and Concordance with Their Nephrology Providers’ Perceptions

Sarah J. Ramer, Natalie N. McCall, Cassianne Robinson-Cohen, Edward D. Siew, Huzaifah Salat, Aihua Bian, Thomas G. Stewart, Maie H. El-Sourady, Mohana Karlekar, Loren Lipworth, T. Alp Ikizler and Khaled Abdel-Kader
JASN December 2018, 29 (12) 2870-2878; DOI: https://doi.org/10.1681/ASN.2018060657
Sarah J. Ramer
1Division of Nephrology and Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York;
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Natalie N. McCall
2Divisions of Nephrology and Hypertension,
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Cassianne Robinson-Cohen
2Divisions of Nephrology and Hypertension,
3Vanderbilt Center for Kidney Disease, Division of Nephrology and Hypertension, Vanderbilt University Medical Center, Nashville, Tennessee; and
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Edward D. Siew
2Divisions of Nephrology and Hypertension,
3Vanderbilt Center for Kidney Disease, Division of Nephrology and Hypertension, Vanderbilt University Medical Center, Nashville, Tennessee; and
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Huzaifah Salat
4Department of Medicine, St. Barnabas Hospital Health System, Bronx, New York
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Aihua Bian
5Department of Biostatistics, Vanderbilt University Medical Center, Nashville, Tennessee;
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Thomas G. Stewart
5Department of Biostatistics, Vanderbilt University Medical Center, Nashville, Tennessee;
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Maie H. El-Sourady
6General Internal Medicine, Public Health, and Palliative Medicine, and
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Mohana Karlekar
6General Internal Medicine, Public Health, and Palliative Medicine, and
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Loren Lipworth
3Vanderbilt Center for Kidney Disease, Division of Nephrology and Hypertension, Vanderbilt University Medical Center, Nashville, Tennessee; and
7Epidemiology, and
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T. Alp Ikizler
2Divisions of Nephrology and Hypertension,
3Vanderbilt Center for Kidney Disease, Division of Nephrology and Hypertension, Vanderbilt University Medical Center, Nashville, Tennessee; and
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Khaled Abdel-Kader
2Divisions of Nephrology and Hypertension,
3Vanderbilt Center for Kidney Disease, Division of Nephrology and Hypertension, Vanderbilt University Medical Center, Nashville, Tennessee; and
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    Figure 1.

    Patients’ first and second choices for health outcome priorities. The proportion of patients who designated a particular outcome as first priority is displayed as a main bar; the proportion of those patients who designated a particular outcome as second priority is displayed as a sub-bar.

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    Table 1.

    Demographic and clinical characteristics of the patients

    Characteristicn=271
    Age, yr71 (66, 77)
    Women123 (45.4)
    Race
     Black50 (18.5)
     Nonblack221 (81.5)a
    Marital status
     Married175 (64.6)
     Divorced31 (11.4)
     Widowed48 (17.7)
     Single/other17 (6.3)
    Highest education level
     Less than high school diploma29 (10.7)
     High school diploma or equivalent68 (25.1)
     Some college59 (21.8)
     College degree or higher115 (42.4)
    Yearly household incomeb
     <$20,00042 (15.5)
     $20,000–39,99967 (24.7)
     $40,000–59,99954 (19.9)
     $60,000–79,99943 (15.9)
     $80,000–99,99916 (5.9)
     ≥$100,00046 (17.0)
    Insurance type
     Private75 (27.7)
     Medicaid/medical assistance11 (4.1)
     Medicare185 (68.3)
    ADL score5 (5, 5)
    iADL score8 (7, 8)
    POS-S Renal score9 (5, 15)
    eGFR, ml/min per 1.73 m2c22.6 (17.0, 28.2)
    BMI, kg/m230.2 (25.9, 35.2)
    Charlson comorbidity index5 (3, 6)
    Specific comorbidities
     Hypertension265 (97.8)
     Diabetes mellitus134 (49.4)
     Coronary artery disease86 (31.7)
     Cerebrovascular disease50 (18.5)
     Peripheral vascular disease31 (11.4)
     All cardiovascular disease117 (43.2)
     Heart failure66 (24.4)
     Cancer67 (24.7)
     Chronic lung disease38 (14.0)
    • Continuous variables expressed as median (IQR); categoric variables expressed as n (%). iADL, instrumental ADLs; POS-S Renal, Palliative care Outcome Scale–Symptoms Renal; BMI, body mass index.

    • ↵a 218 white, three other.

    • ↵b 268 responses, because 3 (1.1%) declined to answer.

    • ↵c As calculated using the Modification of Diet in Renal Disease Study equation.29

    • View popup
    Table 2.

    First-choice health outcome priority, according to self-rated health status

    Self-Rated Health StatusMaintaining Independence (n=133)Staying Alive (n=91)Reducing Pain (n=25)Reducing Other Symptoms (n=17)
    Excellent (n=3)2 (66.7)1 (33.3)0 (0)0 (0)
    Very good (n=39)20 (51.3)16 (41.0)2 (5.1)1 (2.6)
    Good (n=100)56 (56.0)27 (27.0)11 (11.0)6 (6.0)
    Fair (n=102)46 (45.1)34 (33.3)12 (11.8)10 (9.8)
    Poor (n=22)9 (40.9)13 (59.1)0 (0)0 (0)
    • n=266 (five patients missing because they did not answer self-rated health question). Numbers expressed as n (%). Percentages are from row totals. Chi-squared test of overall association: P=0.18.

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    Table 3.

    First-choice health outcome priority and acceptance of common end-of-life scenarios

    Common End-of-Life ScenarioMaintaining Independence (n=130)Staying Alive (n=82)Reducing Pain and Other Symptoms (n=42)Pa
    No longer can recognize or interact with family or friends0.19
     Difficult, but acceptable/Worth living, but just barely55 (42.3)48 (58.5)20 (47.6)
     Not worth living55 (42.3)24 (29.3)14 (33.3)
     Can’t answer now20 (15.4)10 (12.2)8 (19.0)
    No longer can think or talk clearly0.01
     Difficult, but acceptable/Worth living, but just barely59 (45.4)52 (63.4)22 (52.4)
     Not worth living60 (46.2)22 (26.8)11 (26.2)
     Can’t answer now11 (8.5)8 (9.8)9 (21.4)
    No longer can respond to commands or requests0.01
     Difficult, but acceptable/Worth living, but just barely46 (35.4)46 (56.1)18 (42.9)
     Not worth living68 (52.3)26 (31.7)14 (33.3)
     Can’t answer now16 (12.3)10 (12.2)10 (23.8)
    No longer can walk but get around in a wheelchairb0.28
     Difficult, but acceptable/Worth living, but just barely109 (84.5)74 (90.2)35 (83.3)
     Not worth living10 (7.8)1 (1.2)2 (4.8)
     Can’t answer now10 (7.8)7 (8.5)5 (11.9)
    No longer can get outside and must spend all day at home0.22
     Difficult, but acceptable/Worth living, but just barely108 (83.1)75 (91.5)34 (81.0)
     Not worth living8 (6.2)2 (2.4)1 (2.4)
     Can’t answer now14 (10.8)5 (6.1)7 (16.7)
    Are in severe untreatable pain most of the time0.14
     Difficult, but acceptable/Worth living, but just barely52 (40.0)43 (52.4)18 (42.9)
     Not worth living62 (47.7)25 (30.5)16 (38.1)
     Can’t answer now16 (12.3)14 (17.1)8 (19.0)
    Are in severe discomfort most of the time (such as nausea, diarrhea)b0.04
     Difficult, but acceptable/Worth living, but just barely73 (56.6)59 (72.0)23 (54.8)
     Not worth living43 (33.3)13 (15.9)11 (26.2)
     Can’t answer now13 (10.1)10 (12.2)8 (19.0)
    Are on a kidney dialysis machine to keep you aliveb0.22
     Difficult, but acceptable/Worth living, but just barely77 (59.7)61 (74.4)28 (66.7)
     Not worth living32 (24.8)11 (13.4)7 (16.7)
     Can’t answer now20 (15.5)10 (12.2)7 (16.7)
    Are on a breathing machine to keep you alive0.18
     Difficult, but acceptable/Worth living, but just barely37 (28.5)34 (41.5)10 (23.8)
     Not worth living76 (58.5)37 (45.1)24 (57.1)
     Can’t answer now17 (13.1)11 (13.4)8 (19.0)
    Need someone to take care of you 24 h a day0.15
     Difficult, but acceptable/Worth living, but just barely59 (45.4)52 (63.4)23 (54.8)
     Not worth living52 (40.0)23 (28.0)14 (33.3)
     Can’t answer now19 (14.6)7 (8.5)5 (11.9)
    No longer can control your bladder or bowels0.01
     Difficult, but acceptable/Worth living, but just barely60 (46.2)56 (68.3)25 (59.5)
     Not worth living51 (39.2)15 (18.3)10 (23.8)
     Can’t answer now19 (14.6)11 (13.4)7 (16.7)
    Live in a nursing home permanently0.004
     Difficult, but acceptable/Worth living, but just barely60 (46.2)59 (72.0)20 (47.6)
     Not worth living52 (40.0)15 (18.3)15 (35.7)
     Can’t answer now18 (13.8)8 (9.8)7 (16.7)
    Are an emotional or financial burden to family0.001
     Difficult, but acceptable/Worth living, but just barely42 (32.3)46 (56.1)16 (38.1)
     Not worth living69 (53.1)21 (25.6)16 (38.1)
     Can’t answer now19 (14.6)15 (18.3)10 (23.8)
    • Numbers expressed as n (%). Total n=254 (17 of the 271 participants with health outcome priorities were enrolled before inclusion of the end-of-life scenarios tool), except where indicated.

    • ↵a Test of association between first priority and scenario responses. P value calculated using chi-squared test.

    • ↵b n=253.

    • View popup
    Table 4.

    Patients’ (columns) and their providers’ (rows) first choices for health outcome priorities

    Provider ChoicePatient Choice
    Maintaining IndependenceStaying AliveReducing PainReducing Other SymptomsTotal
    Maintaining independence50 (18.5)31 (11.4)9 (3.3)4 (1.5)94 (34.7)
    Staying alive50 (18.5)38 (14.0)9 (3.3)10 (3.7)107 (39.5)
    Reducing pain15 (5.5)9 (3.3)3 (1.1)2 (0.7)29 (10.7)
    Reducing other symptoms12 (4.4)15 (5.5)3 (1.1)1 (0.4)31 (11.4)
    Provider unsure6 (2.2)3 (1.1)1 (0.4)0 (0.0)10 (3.7)
    Total133 (49.1)96 (35.4)25 (9.2)17 (6.3)271 (100)
    • Numbers expressed as n (%).

    • View popup
    Table 5.

    Absolute agreement and weighted κ values for patient-provider concordance for health outcome priorities

    Health Outcome PriorityAbsolute Agreement, % (95% CI)Weighted κa (95% CI)
    Maintaining independence31 (26 to 37)−0.02 (−0.23 to 0.19)
    Staying alive26 (21 to 31)0.01 (−0.20 to 0.21)
    Reducing pain30 (24 to 35)0.01 (−0.18 to 0.20)
    Reducing other symptoms27 (22 to 33)−0.07 (−0.47 to 0.32)
    • ↵a Calculated by treating patients as one rater and providers as another rater.

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Journal of the American Society of Nephrology: 29 (12)
Journal of the American Society of Nephrology
Vol. 29, Issue 12
December 2018
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Health Outcome Priorities of Older Adults with Advanced CKD and Concordance with Their Nephrology Providers’ Perceptions
Sarah J. Ramer, Natalie N. McCall, Cassianne Robinson-Cohen, Edward D. Siew, Huzaifah Salat, Aihua Bian, Thomas G. Stewart, Maie H. El-Sourady, Mohana Karlekar, Loren Lipworth, T. Alp Ikizler, Khaled Abdel-Kader
JASN Dec 2018, 29 (12) 2870-2878; DOI: 10.1681/ASN.2018060657

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Health Outcome Priorities of Older Adults with Advanced CKD and Concordance with Their Nephrology Providers’ Perceptions
Sarah J. Ramer, Natalie N. McCall, Cassianne Robinson-Cohen, Edward D. Siew, Huzaifah Salat, Aihua Bian, Thomas G. Stewart, Maie H. El-Sourady, Mohana Karlekar, Loren Lipworth, T. Alp Ikizler, Khaled Abdel-Kader
JASN Dec 2018, 29 (12) 2870-2878; DOI: 10.1681/ASN.2018060657
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