Background
Methods
Study population
Study design
Statistical analysis
Results
Characteristics of study participants
Variables | 2015 survey | 2006 survey |
---|---|---|
No. sampled | 4000 | 2000 |
No. of completed and returned questionnaires | 1584 | 788 |
Response rate | 39.6% | 39.4% |
Sex – No. (%) | ||
Female | 1151 (72.7) | 559 (70.9) |
Male | 432 (27.3) | 224 (28.4) |
Average age at survey – Mean (SD) | 56 (21) | 52 (19) |
Average age at diagnosis – Mean (SD) | 44 (20) | 41 (19) |
Age at diagnosis (categories) – No (%) | ||
< 18 | 188 (12.8) | 97 (12.4) |
18–34 | 225 (15.3) | 134 (17.2) |
35–44 | 244 (16.6) | 188 (24.1) |
45–54 | 301 (20.5) | 153 (19.6) |
55–64 | 277 (18.8) | 128 (16.4) |
65+ | 236 (16) | 80 (10.3) |
Family members with diagnosed CD – No. (%) | ||
Respondent only person | 1237 (79) | 728 (93) |
At least one other family member diagnosed | 322 (21) | 55 (7) |
Following a GFD – No. (%) | ||
All the time | 1427 (90.8) | N/A |
Most of the time | 131 (8.3) | N/A |
Some/little/none of the time | 14 (0.9) | N/A |
Type and duration of coeliac disease symptoms/associated medical conditions
Number (%) reporting symptoms/CD-associated medical conditions | Difference in % reporting symptoms/CD-associated medical conditions (2015–2006) | ||||||||
---|---|---|---|---|---|---|---|---|---|
2015a | 2006b | ||||||||
No. | % | (95% CI) | No. | % | (95% CI) | Difference in % | (95% CI) | p-value | |
Abdominal pain/bloating | 1111 | 70.4 | (68.2, 72.7) | 556 | 70.7 | (67.6, 73.9) | −0.3 | (−4.2, 3.6) | 0.867 |
Diarrhoea | 956 | 60.6 | (58.2, 63) | 553 | 70.4 | (67.2, 73.6) | −9.8 | (−13.8, −5.8) | < 0.001 |
Chronic fatigue | 935 | 59.3 | (56.8, 61.7) | 488 | 62.2 | (58.8, 65.6) | −2.9 | (−0.7, 1.3) | 0.173 |
Flatulence | 796 | 50.4 | (48, 52.9) | 368 | 46.9 | (43.4, 50.4) | 3.6 | (−0.07, 7.8) | 0.103 |
Anaemia | 773 | 49.0 | (46.5, 51.5) | 509 | 64.8 | (61.5, 68.2) | −15.9 | (−20, −11.7) | < 0.001 |
Constipation | 464 | 29.4 | (27.2, 31.7) | 207 | 26.3 | (23.2, 29.4) | 3.1 | (−0.7, 6.9) | 0.119 |
Mouth ulcer | 451 | 28.6 | (26.3, 30.8) | 236 | 30.1 | (26.8, 33.3) | −1.5 | (−5.4, 2.4) | 0.455 |
Joint pain | 439 | 27.8 | (25.6,30) | 220 | 28.0 | (24.8, 31.1) | −0.2 | (−4.0, 3.7) | 0.931 |
Headache | 416 | 26.4 | (24.2, 28.5) | 232 | 29.6 | (26.4, 32.8) | −3.2 | (−7.1, 0.7) | 0.101 |
Skin rash | 350 | 22.2 | (20.1, 24.2) | 208 | 26.5 | (23.4, 29.6) | −4.3 | (−8, −0.6) | 0.021 |
Depression | 312 | 19.8 | (17.8, 21.7) | 185 | 23.6 | (20.6, 26.6) | −3.8 | (−7.4, −0.3) | 0.032 |
Other symptomsc | 248 | 15.7 | (13.9, 17.5) | 163 | 20.7 | (17.9, 23.5) | −5.0 | (−8.3, −1.6) | 0.003 |
Osteoporosis | 214 | 13.6 | (11.9, 15.3) | 92 | 11.7 | (9.4, 13.9) | 1.9 | (−1, 4.7) | 0.207 |
Ataxia | 39 | 2.5 | (1.7, 3.2) | 39 | 5.0 | (3.4, 6.5) | −2.5 | (−4.2, −0.8) | 0.001 |
Any symptomc | 1535 | 97.3 | (96.5, 98.1) | 771 | 99.2 | (98.6, 99.8) | −2.0 | (−3, −1) | 0.002 |
1–3 symptoms | 514 | 32.6 | (30.3, 34.9) | 166 | 21.2 | (18.3, 24) | 11.4 | (7.5, 14.9) | < 0.001 |
4+ symptoms | 1021 | 64.7 | (62.3, 67,1) | 605 | 77.8 | (74.1, 80) | −13.1 | (− 16.9, −9.4) | < 0.001 |
No symptoms | 43 | 2.7 | (1.9, 3.5) | 6 | 0.8 | (0.2, 1.4) | 2.0 | (1, 3) | 0.002 |
Symptom/CD-associated medical condition | Number (%) reporting symptoms | ||
---|---|---|---|
No. | % | (95% CI) | |
Abdominal pain/bloating | 559 | 35.4 | (33.1, 37.8) |
Diarrhoea | 522 | 33.1 | (30.8, 35.4) |
Joint pain | 451 | 28.6 | (26.3, 30.8) |
Flatulence | 448 | 28.4 | (26.2, 30.6) |
Constipation | 409 | 25.9 | (23.8, 28.1) |
Osteoporosis | 333 | 21.1 | (19.1, 23.1) |
Chronic fatigue | 321 | 20.3 | (18.4, 22.3) |
Headache | 274 | 17.4 | (15.5, 19.2) |
Anaemia | 228 | 14.5 | (12.7, 16.2) |
Skin rash | 220 | 13.9 | (12.2, 15.7) |
Mouth ulcer | 191 | 12.1 | (10.5, 13.7) |
Depression | 180 | 11.4 | (9.8, 13.0) |
Other symptomsa | 100 | 6.3 | (5.1, 7.5) |
Ataxia | 30 | 1.9 | (1.2, 2.6) |
Any symptoma | 1278 | 81.0 | (79.1, 82.9) |
1–3 symptoms | 772 | 48.9 | (46.5, 51.4) |
4+ symptoms | 506 | 32.1 | (29.8, 34.4) |
No symptom | 300 | 19. 0 | (17.1, 20.9) |
Quality of life before and after diagnosis
EQ-5D Question | 2015 | 2006 | ||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Level 1 No problem | Level 2 Some problems | Level 3 Severe problems | Level 1 No problem | Level 2 Some problems | Level 3 Severe problems | |||||||
N | % | N | % | N | % | N | % | N | % | N | % | |
Mobility | ||||||||||||
Before diagnosis | 1126 | 83.4 | 209 | 15.5 | 15 | 1.1 | 524 | 75.2 | 159 | 22.8 | 14 | 2.0 |
After diagnosis | 1169 | 86.6** | 179 | 13.3* | 2 | 0.2*** | 602 | 86.4*** | 93 | 13.3*** | 2 | 0.3** |
UK pop. norma |
73.1
|
26.7
|
0.2
|
78
|
22
|
0
| ||||||
Self-care | ||||||||||||
Before diagnosis | 1295 | 95.9 | 48 | 3.6 | 7 | 0.5 | 648 | 93.0 | 35 | 5.0 | 14 | 2.0 |
After diagnosis | 1305 | 96.7 | 40 | 3.0 | 5 | 0.4 | 673 | 96.6** | 18 | 2.6** | 6 | 0.9* |
UK pop. norma | 90.0 | 6.5 | 0.5 |
93
|
6
|
0
| ||||||
Usual activities | ||||||||||||
Before diagnosis | 899 | 66.6 | 395 | 29.3 | 56 | 4.2 | 403 | 57.8 | 249 | 35.7 | 45 | 6.5 |
After diagnosis | 1132 | 83.9*** | 198 | 14.7*** | 20 | 1.5*** | 574 | 82.4*** | 116 | 16.6*** | 7 | 1.0*** |
UK pop. norma | 75.9 | 21.5 | 2.6 |
78
|
19
|
3
| ||||||
Pain | ||||||||||||
Before diagnosis | 395 | 29.3 | 665 | 49.3 | 290 | 21.5 | 153 | 22.0 | 349 | 50.1 | 195 | 28.0 |
After diagnosis | 857 | 63.5*** | 445 | 33.0*** | 48 | 3.6*** | 416 | 59.7*** | 252 | 36.2*** | 29 | 4.2*** |
UK pop. norma | 54.6 | 41.3 | 6.2 |
58
|
37
|
4
| ||||||
Anxiety/depression | ||||||||||||
Before diagnosis | 837 | 62.0 | 411 | 30.4 | 102 | 7.6 | 351 | 50.4 | 259 | 37.2 | 87 | 12.5 |
After diagnosis | 1034 | 76.6*** | 285 | 21.1*** | 31 | 2.3*** | 518 | 74.3*** | 163 | 23.4*** | 16 | 2.3*** |
UK pop. norma |
73.1
|
24.8
|
2.2
|
75
|
23
|
2
|
2015 | 2006 | 2015–2006 | |||||
---|---|---|---|---|---|---|---|
Mean | 95% CI | Mean | 95% CI | Mean difference | 95% CI | p-value | |
EQ-5D tariff | |||||||
Pre-diagnosis | 0.65 | (0.63, 0.67) | 0.56 | (0.54, 0.59) | 0.09*** | (0.06, 0.12) | < 0.001 |
Time of survey | 0.85 | (0.84, 0.86) | 0.84 | (0.82, 0.85) | 0.01 s | (−0.01, 0.03) | 0.210 |
Change | 0.20*** | (0.18, 0.22) | 0.27*** | (0.25, 0.30) | − 0.07*** | (− 0.11, − 0.04) | < 0.001 |
UK population norma |
0.80
|
(0.79,0.81)
|
0.82
|
(0.81, 0.83)
| |||
Visual Analogue Scale | |||||||
Pre-diagnosis | 56% | (55, 57) | 47% | (46, 49) | 8%*** | (6, 11) | < 0.001 |
Time of survey | 80% | (79, 81) | 80% | (79, 81) | 0 | n/a | n/a |
Change | 24%*** | (23, 26) | 33%*** | (31, 35) | −9%*** | (−11, −6) | < 0.001 |
Factors associated with quality of life before and after diagnosis
Before diagnosisa | After diagnosisb | |||||
---|---|---|---|---|---|---|
Covariates | Coeff. | 95% CI | p-value | Coeff. | 95% CI | p-value |
Male | 0.01 | (−0.04, 0.05) | 0.728 | 0.01 | (−0.02,0.04) | 0.400 |
Age at diagnosis | ||||||
Less than 18 | reference | reference | ||||
18–34 | 0.03 | (−0.04, 0.10) | 0.412 | −0.01 | (− 0.06, 0.03) | 0.632 |
35–44 | 0.03 | (−0.04, 0.10) | 0.449 | −0.02 | (−0.07, 0.02) | 0.333 |
45–54 | 0.08 | (0.01, 0.14) | 0.022 | 0.003 | (−0.04, 0.05) | 0.903 |
55–64 | 0.08 | (0.01, 0.15) | 0.022 | −0.01 | (−0.06, 0.03) | 0.558 |
65+ | 0.17 | (0.09, 0.24) | < 0.001 | 0.02 | (−0.03, 0.06) | 0.537 |
No. of symptoms c | ||||||
None | reference | reference | ||||
1–3 symptoms | −0.17 | (−0.30, − 0.05) | 0.007 | − 0.05 | (− 0.09, − 0.02) | 0.003 |
4+ more symptoms | −0.40 | (− 0.52, − 0.27) | < 0.001 | −0.17 | (− 0.22, − 0.13) | < 0.001 |
Max symptoms duration | – | – | – | −0.002 | (− 0.004, 0.0004) | 0.104 |
No. of comorbidities | ||||||
None | – | – | – | reference | ||
1 comorbidity | – | – | – | −0.02 | (−0.05, 0.01) | 0.158 |
2 comorbidities | – | – | – | − 0.03 | (− 0.07, 0.003) | 0.070 |
3+ comorbidities | – | – | – | − 0.08 | (−0.12, − 0.04) | < 0.001 |
Incomed < £20,000 | −0.06 | (− 0.10, − 0.02) | 0.008 | −0.07 | (− 0.10, − 0.04) | < 0.001 |
Adherence to a GF diet | ||||||
All of the time | – | – | – | reference | ||
Most of the time | – | – | – | − 0.04 | (− 0.08, 0.003) | 0.067 |
Some/little/none of the time | – | – | – | − 0.14 | (−0.31, 0.03) | 0.101 |
Access to GF products in shops | ||||||
Very easily | – | – | – | reference | ||
Fairly easily | – | – | – | −0.02 | (−0.05, 0.004) | 0.105 |
Not easily | – | – | – | −0.07 | (− 0.11, − 0.02) | 0.007 |
Travel patterns AD | ||||||
The same | – | – | – | reference | ||
More likely to travel | – | – | – | −0.08 | (− 0.15, − 0.01) | 0.028 |
Less likely to travel | – | – | – | −0.04 | (− 0.07, 0.01) | 0.002 |
Regiond | ||||||
North East | −0.01 | (−0.12, 0.10) | 0.813 | −0.04 | (− 0.11, 0.03) | 0.317 |
North West | 0.03 | (−0.05, 0.10) | 0.471 | −0.03 | (−0.07, 0.02) | 0.253 |
Yorkshire and The Humber | 0.02 | (−0.05, 0.09) | 0.599 | −0.01 | (−0.05, 0.04) | 0.808 |
East Midlands | 0.003 | (−0.07, 0.08) | 0.927 | -0.004 | (−0.05, 0.04) | 0.866 |
West Midlands | −0.05 | (−0.14, 0.03) | 0.207 | −0.04 | (− 0.10, 0.01) | 0.095 |
East | −0.01 | (−0.08, 0.06) | 0.842 | −0.01 | (− 0.06, 0.03) | 0.577 |
London | −0.09 | (−0.18, 0.01) | 0.079 | −0.02 | (− 0.08, 0.04) | 0.511 |
South East | reference | reference | ||||
South West | −0.01 | (−0.08, 0.07) | 0.872 | −0.04 | (−0.09, 0.01) | 0.096 |
Northern Ireland | −0.04 | (−0.15, 0.07) | 0.494 | −0.04 | (− 0.11, 0.03) | 0.319 |
Scotland | −0.03 | (−0.11, 0.04) | 0.422 | −0.06 | (− 0.11, − 0.01) | 0.020 |
Wales | 0.04 | (−0.05, 0.14) | 0.370 | −0.001 | (− 0.06, 0.06) | 0.971 |