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

doi:10.1681/ASN.2018060657

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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

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 income^b
<$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 m²^c	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

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Table 2.

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

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.

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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)	P^a
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 wheelchair^b				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 alive^b				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.

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Table 4.

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

Provider Choice	Patient Choice
Provider 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 (%).

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Table 5.

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

Health Outcome Priority	Absolute Agreement, % (95% CI)	Weighted κ^a (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)