Introduction
Multiple sclerosis
Multi-attribute utility instruments to assess health state utilities as a measure of HRQoL
Aims of this study
Methods
Data sources: Australian MS Longitudinal Study (AMSLS)
Quality of life survey 2020
Data from other AMSLS surveys
Multi-attribute utility instruments
EQ-5D-5L, EQ-5D-5L-Psychosocial, and AQoL-8D
Instrument | EQ-5D-5L | EQ-5D-5L-Psychosocial | AQoL-8D | EQ VAS |
---|---|---|---|---|
N = 1683 | 0 = death 1.0 = perfect health | 0 = death 1.0 = perfect health | 0 = death 1.0 = perfect health | 0 = worst health state 100 = best health state |
Number of participants | 1651 | 1635 | 1630 | 1618 |
Mean (SD) | 0.58 (0.32) | 0.62 (0.20) | 0.63 (0.20) | 68.67 (21.32) |
Median (IQR) | 0.63 (0.42–0.81) | 0.63 (0.47–0.77) | 0.63 (0.46–0.81) | 75.00 (56.00–85.00) |
Kurtosis* | 3.5 | 2.4 | 2.0 | 3.0 |
Observed range | −0.68–1.0 | 0.05–1.0 | 0.10–1.0 | 0–100 |
Algorithmic range** (Australian value sets) | −0.68–1.0 | 0.046–1.0 | 0.09–1.0 | NA |
Potential health states | 3125 | 1,953,125 | 2.4*1023 | NA |
Population norms for the general Australian population | 0.91 (0.14) | NA | 0.80 (0.19) | 78.55 (16.57) |
Minimal important difference (MID) | 0.04 | NA | 0.08 | 8.61–10.82 |
Participants on ceiling (n, %) | 157 (10%) | 7 (0.004%) | 7 (0.004%) | 0 |
Participants on floor (n, %)*** | 3 (0.002%) | 1 (0.001%) | 0 | 0 |
Statistical methods
External validation of the EQ-5D-5L-Psychosocial scoring algorithm
MAUI comparisons
Descriptive analyses
Ceiling effects/floor effects
N = 2513 | Respondents | Non-respondents |
---|---|---|
Characteristics | (N = 1683) | (N = 830) |
Age at the time of survey | ||
Average in years (n) | 58.6 (1683) | 55.6 (830) |
Sex % (n) | ||
Male | 20.4 (343) | 21.8 (181) |
Female | 79.6 (1340) | 78.2 (649) |
Age group % (n) | ||
< 35 | 1.8 (31) | 4.7 (39) |
35–44 | 9.3 (157) | 15.5 (129) |
45–54 | 24.7 (415) | 23.5 (195) |
55–64 | 32.1 (540) | 30.8 (256) |
65 + | 32.1 (540) | 25.4 (211) |
State/Territory of usual residence % (n) | ||
New South Wales | 28.1 (473) | 32.2 (267) |
Victoria | 29.3 (493) | 23.6 (196) |
Queensland | 12.4 (209) | 18.6 (154) |
South Australia | 9.9 (167) | 8.4 (70) |
Western Australia | 9.8 (165) | 9.4 (78) |
Australian Capital Territory | 4.0 (67) | 3.0 (25) |
Tasmania | 5.7 (96) | 4.2 (35) |
Northern Territory | < 1.0 (1) | < 1.0 (3) |
Education Levels % (n) | ||
Primary | < 1.0 (8) | < 1.0 (7) |
Secondary | 24.6 (400) | 26.1 (203) |
Occupation Certificate | 33.5 (545) | 30.3 (236) |
University (bachelors) | 21.0 (341) | 22.3 (174) |
University (Postgrad) | 16.7 (272) | 16.9 (132) |
Other | 3.7 (60) | 3.5 (27) |
MS type % (n)* | ||
PPMS | 11.3 (190) | NA |
RRMS | 62.8 (1056) | NA |
SPMS | 14.2 (239) | NA |
PRMS | 2.5 (42) | NA |
Unsure | 8.0 (134) | NA |
Disability severity % (n) | ||
No disability | 23.9 (402) | NA |
Mild disability | 20.4 (343) | NA |
Moderate disability | 36.1 (608) | NA |
Severe disability | 18.8 (317) | NA |
MS duration since diagnosis % (n) | ||
Average in years (n) | 19.0 (1393) | 16.9 (683) |
Bland Altman analysis
Discriminatory sensitivity of MAUI HSUs: disability severity and MS type
Results
Respondent characteristics
External validation of the EQ-5D-5L-Psychosocial algorithm for pwMS
EQ VAS | EQ-5D-5L | AQoL-8D | EQ-5D-5L-Psychosocial | |
---|---|---|---|---|
EQ VAS | 1.00 | |||
EQ-5D-5L | 0.59 | 1.00 | ||
AQoL-8D | 0.64 | 0.76 | 1.00 | |
EQ-5D-5L-Psychosocial | 0.66 | 0.82 | 0.93 | 1.00 |
Performance of using EQ-5D-5L-Psychosocial against EQ-5D-5L and AQoL-8D for pwMS
Summary statistics
N = 1683 | EQ-5D-5L | EQ-5D-5L-Psychosocial | AQoL-8D | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Mean | SD | Min | Max | N | Mean | SD | Min | Max | N | Mean | SD | Min | Max | N | |
Overall sample | 0.58 | 0.32 | −0.68 | 1.00 | 1651 | 0.62 | 0.20 | 0.05 | 1.00 | 1635 | 0.63 | 0.20 | 0.10 | 1.00 | 1630 |
Sex | |||||||||||||||
Female | 0.59 | 0.32 | −0.68 | 1.00 | 1321 | 0.62 | 0.20 | 0.05 | 1.00 | 1311 | 0.62 | 0.21 | 0.11 | 1.00 | 337 |
Male | 0.51 | 0.33 | −0.68 | 1.00 | 330 | 0.61 | 0.19 | 0.06 | 1.00 | 324 | 0.63 | 0.22 | 0.12 | 0 | 1332 |
Age group (years) | |||||||||||||||
< 35 | 0.74 | 0.18 | 0.34 | 1.00 | 31 | 0.71 | 0.16 | 0.39 | 1.00 | 31 | 0.73 | 0.17 | 0.37 | 1.00 | 31 |
35–44 | 0.67 | 0.27 | −0.52 | 1.00 | 155 | 0.63 | 0.19 | 0.15 | 1.00 | 154 | 0.64 | 0.21 | 0.17 | 1.00 | 156 |
45–54 | 0.63 | 0.29 | −0.35 | 1.00 | 410 | 0.62 | 0.20 | 0.10 | 1.00 | 410 | 0.63 | 0.22 | 0.17 | 1.00 | 414 |
55–64 | 0.57 | 0.32 | −0.68 | 1.00 | 529 | 0.61 | 0.20 | 0.05 | 1.00 | 525 | 0.62 | 0.21 | 0.12 | 1.00 | 538 |
65 + | 0.50 | 0.34 | −0.68 | 1.00 | 526 | 0.61 | 0.19 | 0.06 | 0.98 | 515 | 0.62 | 0.21 | 0.11 | 1.00 | 530 |
Education level | |||||||||||||||
Secondary School and below | 0.51 | 0.35 | −0.68 | 1.00 | 418 | 0.59 | 0.21 | 0.06 | 0.98 | 414 | 0.59 | 0.22 | 0.11 | 1.00 | 424 |
Occupational certificate | 0.56 | 0.32 | −0.60 | 1.00 | 576 | 0.61 | 0.19 | 0.05 | 1.00 | 571 | 0.61 | 0.21 | 0.14 | 1.00 | 582 |
University bachelors | 0.62 | 0.30 | −0.68 | 1.00 | 357 | 0.64 | 0.20 | 0.13 | 1.00 | 354 | 0.66 | 0.21 | 0.21 | 1.00 | 360 |
University postgrad | 0.65 | 0.28 | −0.18 | 1.00 | 289 | 0.64 | 0.19 | 0.14 | 1.00 | 285 | 0 | 0 | 0 | 1.00 | 292 |
Disability severity | |||||||||||||||
No | 0.85 | 0.16 | −0.22 | 1.00 | 394 | 0.79 | 0.14 | 0.10 | 1.00 | 392 | 0.82 | 0.15 | 0.19 | 1.00 | 401 |
Mild | 0.71 | 0.20 | −0.20 | 1.00 | 342 | 0.66 | 0.16 | 0.24 | 0.98 | 341 | 0.67 | 0.17 | 0.23 | 1.00 | 343 |
Moderate | 0.52 | 0.22 | −0.27 | 1.00 | 596 | 0.53 | 0.17 | 0.11 | 0.96 | 588 | 0.54 | 0.18 | 0.18 | 1.00 | 602 |
Severe | 0.18 | 0.31 | −0.68 | 0.83 | 308 | 0.50 | 0.18 | 0.05 | 0.90 | 303 | 0.51 | 0.19 | 0.11 | 0.97 | 312 |
MS phenotype | |||||||||||||||
Progressive | 0.36 | 0.34 | −0.68 | 1.00 | 225 | 0.54 | 0.19 | 0.10 | 1.00 | 219 | 0.55 | 0.21 | 0.17 | 1.00 | 230 |
Relapsing | 0.61 | 0.30 | −0.68 | 1.00 | 1289 | 0.62 | 0.20 | 0.05 | 1.00 | 1280 | 0.64 | 0.21 | 0.11 | 1.00 | 1298 |
DMT current | |||||||||||||||
Yes | 0.62 | 0.29 | −0.57 | 1.00 | 846 | 0.63 | 0.20 | 0.08 | 1.00 | 842 | 0.62 | 0.29 | −0.57 | 1.00 | 846 |
No | 0.51 | 0.35 | −0.68 | 1.00 | 477 | 0.60 | 0.20 | 0.06 | 1.00 | 469 | 0.61 | 0.21 | 0.11 | 1.00 | 483 |
Current MS-related Relapse | |||||||||||||||
Yes | 0.43 | 0.32 | −0.57 | 1.00 | 202 | 0.50 | 0.19 | 0.05 | 0.96 | 199 | 0.48 | 0.20 | 0.12 | 1.00 | 205 |
No | 0.66 | 0.28 | −0.35 | 1.00 | 1111 | 0.66 | 0.19 | 0.11 | 1.00 | 1104 | 0.68 | 0.20 | 0.18 | 1.00 | 1120 |
Years since first diagnosed with MS | |||||||||||||||
< 10 years | 0.61 | 0.30 | −0.35 | 1.00 | 229 | 0.60 | 0.20 | 0.14 | 1.00 | 225 | 0.60 | 0.22 | 0.18 | 1.00 | 232 |
10–14 years | 0.63 | 0.30 | −0.60 | 1.00 | 367 | 0.64 | 0.19 | 0.10 | 1.00 | 366 | 0.65 | 0.21 | 0.18 | 1.00 | 370 |
15–19 years | 0.61 | 0.31 | −0.68 | 1.00 | 419 | 0.63 | 0.20 | 0.06 | 0.98 | 417 | 0.64 | 0.21 | 0.11 | 1.00 | 421 |
20–29 years | 0.55 | 0.34 | −0.57 | 1.00 | 440 | 0.60 | 0.20 | 0.05 | 1.00 | 436 | 0.61 | 0.21 | 0.12 | 1.00 | 449 |
> 30 years | 0.43 | 0.32 | −0.34 | 1.00 | 181 | 0.59 | 0.18 | 0.13 | 0.96 | 176 | 0.60 | 0.20 | 0.15 | 0.99 | 182 |
Ceiling and floor effects
Variable | EQ-5D-5L-Psychosocial | AQoL-8D | EQ VAS |
---|---|---|---|
Age (years) | 55.4 | 55.4 | 55.4 |
Female (n, %) | 136 (87%) | 136 (87%) | 136 (87%) |
HSU or EQ VAS score | |||
Mean (SD) | 0.90 (0.08) | 0.91 (0.09) | 85.60 (17.86) |
Median (IQR) | 0.92 (0.86–0.96) | 0.94 (0.88–0.97) | 90.0 (85.0–95.25) |
Range | 0.62–1.00 | 0.63–1.00 | 0–100 |
Disability severity (n, %) | |||
EDSS Normal | 119 (76%) | 119 (76%) | 119 (76%) |
EDSS Mild | 31 (20%) | 31 (20%) | 31 (20%) |
EDSS Moderate | 6 (4%) | 6 (4%) | 6 (4%) |
EDSS Severe | 0 | 0 | 0 |
Bolt-on dimensions | Level of response | ||||
---|---|---|---|---|---|
N = 157 | Best response | Worst response | |||
n (%) | Level 1 | Level 2 | Level 3 | Level 4 | Level 5 |
Vitality | 19 (12%) | 105 (67%) | 28 (18%) | 5 (3%) | 0 |
Relationships | 105 (67%) | 45 (29%) | 5 (3%) | 2 (1%) | 0 |
Sleep | 22 (14%) | 74 (47%) | 47 (30%) | 11 (7%) | 3 (2%) |
Community* | 100 (64%) | 47 (30%) | 9 (6%) | 1 (1%) | 0 |
Interchangeability
Sensitivity
Comparisons of standardised estimates | |||||
---|---|---|---|---|---|
Panel A, n = 1619 | Panel B, n = 1624 | ||||
EQ-5D-5L | EQ-5D-5L-Psychosocial | AQoL-8D | EQ-5D-5L (equally weighted score) | EQ-5D-5L- Psychosocial (equally weighted score) | |
Disability Severity (ref. normal) | |||||
Mild | −0.450 | −0.677 | −0.720 | −0.450 | 0.593 |
Moderate | −1.030 | −1.364 | −1.359 | −1.167 | −1.324 |
Severe | −2.128 | −1.602 | −1.565 | −2.177 | −2.001 |