Table 3

Variables referring to the understanding of the dementia and associations with patient’s comfort when dying
Variable Response% or mean (SD) Mean EOLD-CAD patient comfort score at the end of life (SD) Difference in mean patient comfort relative to the reference group or per unit increase on scale
Unadjusted (95% CI) Adjusteda (95% CI)
Families (baseline assessment, upon admission)
(1) Comprehension of complications (n = 161; overall: 34.1 SD 5.6) (n = 161) (n = 151)
- understood 50 33.9 (6.5) reference reference
- not understood 32 33.8 (4.7) −0.1 (−2.1; 1.9) −0.3 (−2.4; 1.9)
- refused (do not know and similar comments) 18 35.3 (4.5) 1.4 (−0.7; 3.4) 0.9 (−1.1; 2.9)
P = 0.31b P = 0.50b
(2) Comprehension of prognosis: life expectancy (n = 161; overall: 34.1 SD 5.6) (n = 161) (n = 151)
- 12 months or less (<1 month: 1%, 1 to 6 months: 5%,
7 to 12 months: 9%) 15 34.1 (7.5) reference reference
- more than 12 months 32 33.7 (5.7) −0.4 (−3.5; 2.7) −0.6 (−3.6;2.3)
- do not know 53 34.4 (5.0) 0.3 (−2.9; 3.4) −0.6 (−3.5;2.4)
P = 0.82b P = 0.91b
(3) Having been counseled on health problems in later stages (n = 161; overall: 34.1 SD 5.6) (n = 161) (n = 151)
-yes 39 34.7 (5.7) reference reference
-no 61 33.8 (5.6) −0.9 (−2.6; 0.9) −0.9 (−2.8;1.1)
(4) Having been counseled on how long patient may live (n = 160; overall: (n = 160) (n = 150)
34.1 (5.6)
-yes 21 34.5 (6.2) reference reference
-no 79 34.0 (5.5) −0.6 (−2.7; 1.6) −0.6 (−2.8;1.6)
(5) Perception of dementia as “a disease you can die from” (n = 160 overall) (n = 160) (n = 150)
- 1 to 5 scale, coefficient bc 2.5 (1.2) 34.2 SD 5.6 b = −0.7 (−1.5; -0.01) b = −0.8 (−1.5;-0.06)
- completely agree 29 35.1 (5.6) reference reference
- partly agree 14 34.9 (7.1) −0.1 (−3.4; 3.1) −0.1 (−3.3; 3.1)
- neither agree, nor disagree 13 34.8 (4.6) −0.3 (−2.7; 2.0) −1.0 (−3.6; 1.6)
- partly disagree 8 33.8 (4.4) −1.2 (−4.3; 1.8) −1.6 (−4.3;1.1)
- completely disagree 9 31.5 (5.5) −3.6 (−6.5; -0.7) −3.6 (−6.5;-0.7)
- do not know 28 33.5 (5.6) −1.5 (−4.5; 1.4) −1.5 (−4.5; 1.6)
Physicians
(6) Comprehension of prognosis: perceived life expectancy (baseline) (n = 150; overall: 34.4 SD 5.4) (n = 150) (n = 138)
- 12 months or less (<1 month: 1%, 1 to 6 months: 9%, 7 to 12 months: 16%) 25 33.6 (6.5) reference reference
- more than 12 months 59 34.4 (5.0) 0.8 (−1.5; 3.2) 0.3 (−2.1; 2.8)
- do not know 16 35.5 (5.1) 1.9 (−0.9;4.7) 1.2 (−1.7; 4.1)
P = 0.39b P = 0.67b
(7) Having counseled how long the patient may live (baseline) (n = 150; overall: (n = 150) (n = 138)
34.4 SD 5.4)
-yes 21 34.9 (4.9) reference reference
-no 79 34.2 (5.5) −0.7 (−2.7; 1.3) −0.8 (−2.8;1.3)
(8) Perception of dementia as “a disease you can die from” (midway study) (n = 144 overall) (n = 144) (n = 138)
- 1 to 5 scale, coefficient bc 4.7 (0.8) 34.1 SD 5.7 b = −1.0 (−2.4; 0.4) b = −1.0 (−2.2; 0.2)
- completely agree 85 34.2 (5.9) reference reference
- partly agree 9 35.8 (2.3) 1.5 (0.1; 2.9) 1.8 (0.5; 3.1)
- neither agree, nor disagree 3 30.5 (5.4) −3.7 (−7.7; 0.3) −3.1 (−7.3;1.2)
- partly disagree 0 - - -
- completely disagree 3 29.6 (7.3) −4.6 (−11; 2.2) −4.9 (−11;1.3)
Families and physicians
Perception of dementia as “a disease you can die from,” 2 to 10 scale, coefficient bc 8.2 (1.5) (n = 160 overall) 34.2 SD 5.6 (n = 160) b = −0.8 (−1.4;-0.2) (n = 143) b = −0.9 (−1.5;-0.2)d

EOLD-CAD, End-of-life in Dementia-Comfort Assessment in Dying scale (possible range: 14 to 42, higher scores represent better comfort).

aAdjusted for potential confounders: assessment of EOLD-CAD by physician versus nurse; for three variables as they related to the time of the patient’s death: families’ baseline understanding, the physician’s assessment of perception of dementia, and time since the first death in the study; and family education when applicable (for example, no adjustment for family variables in analyzing associations with physician variables only). Adjustment was without imputation which explains the lower n. With simple imputation of mean or median as appropriate, confidence intervals were minimally smaller and coefficients were similar.

bThe P-values refer to GEE versions of ANOVA (unadjusted P-value) or ANCOVA (adjusted).

cb is the regression coefficient for 1-point increment disagreement, where “neither agree, nor disagree” is combined with “don’t know” (families).

dThe coefficients and confidence intervals were similar (adjusted: b = −0.9 (−1.5; -0.3)) when eight cases in which the physician completed the after-death assessment and baseline assessment at the same time, were excluded from the analyses.

van der Steen et al.

van der Steen et al. BMC Medicine 2013 11:105   doi:10.1186/1741-7015-11-105

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