The authors would like to make a number of corrections. During reidentification of data to allow a scheduled email to participants, a coding anomaly was detected, such that the identification and filtering out of duplicates had been incorrectly undertaken. This meant that some participants were incorrectly removed from the dataset prior to analysis while some duplicate entries had been included in analysis. Many minor changes to the results in the published paper have occurred as a result of this error. The authors apologise for any inconvenience caused.
In the abstract, on the sixth line, the figure 2519 should be changed to 2469.
Figure
Characteristics of the study sample.
Characteristics | Number (%) |
---|---|
Gender | |
Male | 407/2303 (17.7) |
Female | 1896/2303 (82.3) |
Age in 2012 (years) | |
18–29 | 128/2398 (5.3) |
30–39 | 619/2398 (25.8) |
40–49 | 779/2398 (32.5) |
50–59 | 634/2398 (26.4) |
60–69 | 222/2398 (9.3) |
>70 | 16/2398 (0.7) |
Country of location | |
USA | 807/2469 (32.7) |
Australia | 629/2469 (25.5) |
UK | 417/2469 (16.9) |
NZ | 210/2469 (8.5) |
Canada | 105/2469 (4.3) |
Other* | 301/2469 (12.2) |
Country of birth | |
USA | 772/2461 (31.4) |
Australia | 508/2461 (20.6) |
UK | 492/2461 (20.0) |
NZ | 172/2461 (7.0) |
Canada | 106/2461 (4.3) |
Other† | 411/2461 (16.7) |
Marital status | |
Married | 1472/2431 (60.6) |
Single | 359/2431 (14.8) |
Cohabitating/partnered | 316/2431 (13.0) |
Separated/divorced | 257/2431 (10.6) |
Widowed | 27/2431 (1.1) |
Family status | |
No children | 766/2431 (31.5) |
One or more biological children | 1599/2431 (65.8) |
One or more stepchildren | 236/2431 (9.7) |
Number of children |
2 (0–2) |
Employment status | |
Employed full time | 800/2459 (32.5) |
Employed part time | 524/2459 (21.3) |
Stay at home parent/carer | 184/2459 (7.5) |
Student full time | 60/2459 (2.4) |
Unemployed‡ | 196/2459 (8.0) |
Retired due to age | 72/2459 (2.9) |
Retired due to medical reasons or disability | 570/2459 (23.2) |
Other | 53/2459 (2.2) |
Education status | |
No formal schooling | 3/2455 (0.1) |
Primary school | 52/2455 (2.1) |
Secondary school | 549/2455 (22.4) |
Vocational training | 395/2455 (16.1) |
Bachelor’s degree | 888/2455 (36.2) |
Postgraduate degree | 568/2455 (23.1) |
Diagnostic characteristics and level of disability.
Number (%) | |
---|---|
Number of years since diagnosis | |
<1–5 | 1098/2420 (45.4) |
6–10 | 568/2420 (23.5) |
11–15 | 383/2420 (15.8) |
16–20 | 182/2420 (7.5) |
21–25 | 96/2420 (4.0) |
26–30 | 47/2420 (1.9) |
>30 | 46/2420 (1.9) |
Disability (PDDS) | |
Normal | 744/2300 (32.3) |
Mild disability | 351/2300 (15.3) |
Moderate disability | 172/2300 (7.5) |
Gait disability | 365/2300 (15.9) |
Early cane | 253/2300 (11.0) |
Late cane | 175/2300 (7.6) |
Bilateral support | 138/2300 (6.0) |
Wheelchair/scooter | 99/2300 (4.3) |
Bedridden | 3/2300 (0.1) |
Currently experiencing symptoms due to a recent relapse |
|
Yes | 639/2394 (26.7) |
No | 1431/2394 (59.8) |
Unsure | 324/2394 (13.5) |
Diagnosed subtype of MS.
Benign | Relapsing and remitting | Primary progressive | Secondary progressive | Progressive relapsing | Unsure/other | |
---|---|---|---|---|---|---|
Type of MS first diagnosed, number (%) | 99/2418 (4.1) | 1864/2418 (77.1) | 151/2418 (6.2) | 43/2418 (1.8) | 14/2418 (0.6) | 247/2418 (10.2) |
Type of MS currently diagnosed, number (%) | 100/2421 (4.1) | 1493/2421 (61.7) | 175/2421 (7.2) | 275/2421 (11.4) | 48/2421 (2.0) | 330/2421 (13.6) |
Relapse rate for relapsing-remitting participants.
Self-diagnosed relapse rate | Doctor-diagnosed relapse rate | |||||
---|---|---|---|---|---|---|
|
Mean (95% CI) | Median (IQR) |
|
Mean (95% CI) | Median (IQR) | |
Number of relapses over the last 12 months* | 1469/1493 | 1.09 (1.01–1.17) | 1 (0.0–2.0) | 1452/1493 | 0.73 (0.67–0.78) | 0 (0.0–1.0) |
Number of relapses over the last 5 years, annualised* | 1401/1493 | 0.98 (0.93–1.03) | 0.67 (0.4–1.2) | 1388/1493 | 0.66 (0.62–0.70) | 0.5 (0.2–1.0) |
MSQOL summary scores.
Summary score |
|
Distribution (Kolmogorov) | Mean (95% CI) | Median (IQR) |
---|---|---|---|---|
Overall quality of life subscore | 2259 (210) | 0.00 | 66.9 (66.1–67.7) | 68.4 (55.0–81.7) |
Physical health composite | 1937 (532) | 0.00 | 59.2 (58.2–60.1) | 59.1 (42.5–77.4) |
Mental health composite | 2210 (259) | 0.00 | 66.7 (65.8–67.6) | 72.1 (51.1–84.1) |
Depression and fatigue screening.
Cutoff | Positive, number (%, 95% CI) | Negative, number (%, 95% CI) | |
---|---|---|---|
Depression screen (PHQ-2) | Negative < 3; positive ≥ 3 | 429/2225 (19.3, 17.7–21.0) | 1796/2225 (80.7, 79.0–82.3) |
Fatigue (FSS) mean score | Negative < 4; positive ≥ 4 | 1402/2138 (65.6, 63.5–67.6) | 736/2138 (34.4, 32.4–36.5) |
Comparison of data with NARCOMS and MSBase registries.
HOLISM | NARCOMS |
MSBase |
|
---|---|---|---|
Female (%) | 82.3 | 74.9 | 71.5 |
Age at diagnosis (years) | 37.0 (median) | 36.9 (mean) | 32.2 (mean) |
Age at symptom onset (years) | 31.0 (median) | 32.4 (mean) | Data not provided |
Age at enrolment (years) | 45.0 (median) | 42.8 (mean) | 42.7 (mean) |
Disease duration at enrolment (years) | 6.0 (median) | Data not provided | 10.4 (mean) |
Country of residence.
Country |
|
---|---|
Armenia | 1 |
Australia | 629 |
Austria | 2 |
Belgium | 5 |
Brazil | 7 |
Bulgaria | 1 |
Canada | 105 |
China | 1 |
Croatia | 7 |
Cyprus | 1 |
Czech Republic | 2 |
Denmark | 10 |
Estonia | 2 |
Finland | 4 |
France | 11 |
Gibraltar | 2 |
Guam | 1 |
Germany | 29 |
Greece | 12 |
Iceland | 2 |
India | 3 |
Indonesia | 1 |
Iran | 1 |
Ireland | 36 |
Israel | 2 |
Italy | 6 |
Kuwait | 1 |
Lebanon | 1 |
Luxembourg | 1 |
Malta | 2 |
Mexico | 3 |
Namibia | 1 |
The Netherlands | 27 |
New Zealand | 210 |
Norway | 13 |
Philippines | 2 |
Poland | 3 |
Portugal | 6 |
Puerto Rico | 3 |
Qatar | 1 |
Romania | 4 |
Russian Federation | 2 |
Saudi Arabia | 2 |
Serbia | 2 |
Singapore | 2 |
Slovakia | 4 |
Slovenia | 2 |
South Africa | 30 |
Spain | 9 |
Sweden | 16 |
Switzerland | 8 |
Syria | 1 |
Trinidad and Tobago | 1 |
Turkey | 1 |
United Arab Emirates | 4 |
United Kingdom | 417 |
United States | 807 |
Participant study inclusion criteria.
– In the first paragraph, the first sentence beginning with “A total of 3053 participants” should now read: “Following the removal of duplicate records, a total of 2996 participants;” 2519 should be changed to 2469; 2518 should be changed to 2468; 89% should be changed to 90.4%;
– In the second paragraph, 82.2% should be changed to 82.3%; 46 should be changed to 45; 38 should be changed to 37; 88% should be changed to 87.8%; 61.1% should be changed to 60.6%; 23.4% should be changed to 23.2%; 64.0% should be changed to 39.0%.
– In the third paragraph, 13 should be changed to 12; 45.0% should be changed to 45.4%; 61.0% should be changed to 61.7%; 76.7% should be changed to 77.1%.
– In the fourth paragraph,31.7% should be changed to 32.3%.
– In the fifth paragraph 0.97 should be changed to 0.98; 1382 should be changed to 1372; 42.0% should be changed to 42.1%; 31.0% should be changed to 30.8%; 27.0% should be changed to 27.2%.
– In the sixth paragraph, 81.65 should be changed to 81.7; 59.2 should be changed to 59.1; 42.3 should be changed to 42.5; 77.2 should be changed to 77.4; 72.0 should be changed to 72.1; 51.2 should be changed to 51.1.
– In the first paragraph, 65.7% should be changed to 65.6%; 63.7 should be changed to 63.5; 67.7 should be changed to 67.6.
– In the second paragraph, 68.4% should be changed to 67.2%; 51.4% should be changed to 50.1%.
– In the first paragraph, 59.5% should be changed to 59.7%; 38.0% should be changed to 37.8%; 21.5% should be changed to 21.4%; 67.0% should be changed to 66.8%; 82.3% should be changed to 82.4%; 64.3% should be changed to 64.2%; 676 should be changed to 675; 30.0% should be changed to 30.1%.