Article Figures & Data
Figures
- 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.
Tables
Characteristic n=271 Age, yr 71 (66, 77) Women 123 (45.4) Race Black 50 (18.5) Nonblack 221 (81.5)a Marital status Married 175 (64.6) Divorced 31 (11.4) Widowed 48 (17.7) Single/other 17 (6.3) Highest education level Less than high school diploma 29 (10.7) High school diploma or equivalent 68 (25.1) Some college 59 (21.8) College degree or higher 115 (42.4) Yearly household incomeb <$20,000 42 (15.5) $20,000–39,999 67 (24.7) $40,000–59,999 54 (19.9) $60,000–79,999 43 (15.9) $80,000–99,999 16 (5.9) ≥$100,000 46 (17.0) Insurance type Private 75 (27.7) Medicaid/medical assistance 11 (4.1) Medicare 185 (68.3) ADL score 5 (5, 5) iADL score 8 (7, 8) POS-S Renal score 9 (5, 15) eGFR, ml/min per 1.73 m2c 22.6 (17.0, 28.2) BMI, kg/m2 30.2 (25.9, 35.2) Charlson comorbidity index 5 (3, 6) Specific comorbidities Hypertension 265 (97.8) Diabetes mellitus 134 (49.4) Coronary artery disease 86 (31.7) Cerebrovascular disease 50 (18.5) Peripheral vascular disease 31 (11.4) All cardiovascular disease 117 (43.2) Heart failure 66 (24.4) Cancer 67 (24.7) Chronic lung disease 38 (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
Self-Rated Health Status Maintaining 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.
- Table 3.
First-choice health outcome priority and acceptance of common end-of-life scenarios
Common End-of-Life Scenario Maintaining Independence (n=130) Staying Alive (n=82) Reducing Pain and Other Symptoms (n=42) Pa No longer can recognize or interact with family or friends 0.19 Difficult, but acceptable/Worth living, but just barely 55 (42.3) 48 (58.5) 20 (47.6) Not worth living 55 (42.3) 24 (29.3) 14 (33.3) Can’t answer now 20 (15.4) 10 (12.2) 8 (19.0) No longer can think or talk clearly 0.01 Difficult, but acceptable/Worth living, but just barely 59 (45.4) 52 (63.4) 22 (52.4) Not worth living 60 (46.2) 22 (26.8) 11 (26.2) Can’t answer now 11 (8.5) 8 (9.8) 9 (21.4) No longer can respond to commands or requests 0.01 Difficult, but acceptable/Worth living, but just barely 46 (35.4) 46 (56.1) 18 (42.9) Not worth living 68 (52.3) 26 (31.7) 14 (33.3) Can’t answer now 16 (12.3) 10 (12.2) 10 (23.8) No longer can walk but get around in a wheelchairb 0.28 Difficult, but acceptable/Worth living, but just barely 109 (84.5) 74 (90.2) 35 (83.3) Not worth living 10 (7.8) 1 (1.2) 2 (4.8) Can’t answer now 10 (7.8) 7 (8.5) 5 (11.9) No longer can get outside and must spend all day at home 0.22 Difficult, but acceptable/Worth living, but just barely 108 (83.1) 75 (91.5) 34 (81.0) Not worth living 8 (6.2) 2 (2.4) 1 (2.4) Can’t answer now 14 (10.8) 5 (6.1) 7 (16.7) Are in severe untreatable pain most of the time 0.14 Difficult, but acceptable/Worth living, but just barely 52 (40.0) 43 (52.4) 18 (42.9) Not worth living 62 (47.7) 25 (30.5) 16 (38.1) Can’t answer now 16 (12.3) 14 (17.1) 8 (19.0) Are in severe discomfort most of the time (such as nausea, diarrhea)b 0.04 Difficult, but acceptable/Worth living, but just barely 73 (56.6) 59 (72.0) 23 (54.8) Not worth living 43 (33.3) 13 (15.9) 11 (26.2) Can’t answer now 13 (10.1) 10 (12.2) 8 (19.0) Are on a kidney dialysis machine to keep you aliveb 0.22 Difficult, but acceptable/Worth living, but just barely 77 (59.7) 61 (74.4) 28 (66.7) Not worth living 32 (24.8) 11 (13.4) 7 (16.7) Can’t answer now 20 (15.5) 10 (12.2) 7 (16.7) Are on a breathing machine to keep you alive 0.18 Difficult, but acceptable/Worth living, but just barely 37 (28.5) 34 (41.5) 10 (23.8) Not worth living 76 (58.5) 37 (45.1) 24 (57.1) Can’t answer now 17 (13.1) 11 (13.4) 8 (19.0) Need someone to take care of you 24 h a day 0.15 Difficult, but acceptable/Worth living, but just barely 59 (45.4) 52 (63.4) 23 (54.8) Not worth living 52 (40.0) 23 (28.0) 14 (33.3) Can’t answer now 19 (14.6) 7 (8.5) 5 (11.9) No longer can control your bladder or bowels 0.01 Difficult, but acceptable/Worth living, but just barely 60 (46.2) 56 (68.3) 25 (59.5) Not worth living 51 (39.2) 15 (18.3) 10 (23.8) Can’t answer now 19 (14.6) 11 (13.4) 7 (16.7) Live in a nursing home permanently 0.004 Difficult, but acceptable/Worth living, but just barely 60 (46.2) 59 (72.0) 20 (47.6) Not worth living 52 (40.0) 15 (18.3) 15 (35.7) Can’t answer now 18 (13.8) 8 (9.8) 7 (16.7) Are an emotional or financial burden to family 0.001 Difficult, but acceptable/Worth living, but just barely 42 (32.3) 46 (56.1) 16 (38.1) Not worth living 69 (53.1) 21 (25.6) 16 (38.1) Can’t answer now 19 (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.
- Table 4.
Patients’ (columns) and their providers’ (rows) first choices for health outcome priorities
Provider Choice Patient Choice Maintaining Independence Staying Alive Reducing Pain Reducing Other Symptoms Total Maintaining independence 50 (18.5) 31 (11.4) 9 (3.3) 4 (1.5) 94 (34.7) Staying alive 50 (18.5) 38 (14.0) 9 (3.3) 10 (3.7) 107 (39.5) Reducing pain 15 (5.5) 9 (3.3) 3 (1.1) 2 (0.7) 29 (10.7) Reducing other symptoms 12 (4.4) 15 (5.5) 3 (1.1) 1 (0.4) 31 (11.4) Provider unsure 6 (2.2) 3 (1.1) 1 (0.4) 0 (0.0) 10 (3.7) Total 133 (49.1) 96 (35.4) 25 (9.2) 17 (6.3) 271 (100) Numbers expressed as n (%).
- Table 5.
Absolute agreement and weighted κ values for patient-provider concordance for health outcome priorities
Health Outcome Priority Absolute Agreement, % (95% CI) Weighted κa (95% CI) Maintaining independence 31 (26 to 37) −0.02 (−0.23 to 0.19) Staying alive 26 (21 to 31) 0.01 (−0.20 to 0.21) Reducing pain 30 (24 to 35) 0.01 (−0.18 to 0.20) Reducing other symptoms 27 (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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Health Outcome Priorities of Older Adults with Advanced CKD and Concordance with Their Nephrology Providers’ Perceptions
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