Table 1.
The British VLAs Socio-demographic Characteristics of Participants [Phase 2 – T1]
| AS (n = 165) | OA (n = 184) | SLE (n = 164) | SS (n = 170) | CP/FM (n = 194) | CH/UL (n = 158) | PSS (n = 171) | RA (n = 340) | |
|---|---|---|---|---|---|---|---|---|
| Response Rate (%) | 79 | 80 | 89 | 88 | 77 | 73 | 88 | 80 |
| Age (Mean (SD)) | 53.48 (13.89) | 63.28 (10.41) | 53.20 (13.22) | 65.52 (10.65) | 53.10 (13.47) | 54.66 (14.13) | 62.88 (11.25) | 61.96 (12.09) |
| Gender (M: F) | 118:45 | 41:143 | 7:157 | 12:158 | 24:170 | 48:109 | 10:160 | 89:251 |
|
Recruited from: NHS: Patient Organisation |
120:45 | 184:0 | 40:124 | 38:132 | 88:106 | 122:36 | 104:67 | |
| Condition duration in years (Mean (SD): | 24.75 (15.16) | 10.43 (10.24) | 18.22 (11.54) | 16.67 (11.15) | 12.96 11.62) | 6.0 (12.34) | 16.44 (17.04) | 14.44 (11.73) |
| Marital status: n (%): | ||||||||
| Single/Divorced/Widowed | 38 (33%) | 46 (25%) | 31 (19%) | 58 (34%) | 58 (30%) | 42 (26%) | 54 (32%) | 94 (28%) |
| Married/Living with partner | 126 (77%) | 136 (74%) | 133 (81%) | 111 (66%) | 136 (70%) | 115 (74%) | 117 (68%) | 241 (71%) |
| Missing | 1 (0.0%) | 2 (0.0%) | 0 | 1 (0.0%) | 0 | 1 (0.0%) | 0 | 5 (1%) |
| Living status: n (%) | ||||||||
| Alone | 26 (16%) | 43 (23%) | 17 (10%) | 52 (30%) | 38(20%) | 36 (24%) | 47 (28%) | 70 (21%) |
| Family/Significant other | 134 (81%) | 133 (73%) | 143 (87%) | 115 (68%) | 145 (75%) | 113 (71%) | 121 (71%) | 245 (72%) |
| Missing | 5 (3%) | 8 (4%) | 9 (3%) | 3 (2%) | 11 (5%) | 8 (5%) | 3 (1%) | 25 (7%) |
| Children living at home n (%): | 41 (25%) | 12 (7%) | 28 (17%) | 3 (2%) | 47 (24%) | 24 (15%) | 17 (10%) | 36 (10.5) |
| Employment status: | ||||||||
| Paid employment | 87 (53%) | 56 (30%) | 62 (38%) | 38 (22%) | 70 (36%) | 80 (51%) | 64 (38%) | 108 (32%) |
| Long term sick leave | 7 (4%) | 5 (3%) | 9 (6%) | 2 (1%) | 14 (7%) | 10 (6%) | 2 (1%) | 9 (2%) |
| Early retired ill-health | 19 (12%) | 13 (7%) | 31 (19%) | 29 (17%) | 30 (16%) | 10 (6%) | 16 (10%) | 35 (10%) |
| Unemployed | 5 (3%) | 3 (2%) | 1 (1%) | 1 (1%) | 16 (8%) | 4 (3%) | 2 (1%) | 4 (1%) |
| Retired | 41 (25%) | 103 (57%) | 44 (26%) | 95 (56%) | 38 (26%) | 44 (28%) | 82 (48%) | 169 (50%) |
| Homemaker | 5 (3%) | 2 (1%) | 14 (9%) | 4 (2%) | 21 (11%) | 6 (4%) | 3 (2%) | 8 (2%) |
| Student | 0 | 0 | 2 (1%) | 0 | 3 (1%) | 1 (0.0%) | 0 | 1 (0.0%) |
| Missing | 1 (0.0%) | 2 (0.0%) | 1 (0.0%) | 1 (0.0%) | 2 (0.0%) | 3 (0.0%) | 1 (0.0%) | 5 (1%) |
| Education level (ISCED): | ||||||||
| Level 1: Compulsory school | 19 (12%) | 47 (25%) | 16 (10%) | 23 (13%) | 20 (10%) | 23 (15%) | 22 (13%) | 78 (23%) |
| Level 2: Secondary 1st stage | 22 (14%) | 43 (23%) | 40 (24%) | 37 (22%) | 45 (23%) | 22 (14%) | 39 (23%) | 82 (24%) |
| Level 3: Secondary second | 15 (9%) | 7 (4%) | 20 (12%) | 20 (12%) | 14 (7%) | 16 (10%) | 14 (8%) | 22 (6%) |
| Level 4: Post-secondary | 37 (22%) | 23 (13%) | 18 (11%) | 18 (10%) | 26 (14%) | 19 (12%) | 28 (16%) | 51 (15%) |
| Level 5: Tertiary | 63 (38%) | 46 (25%) | 69 (42%) | 66 (39%) | 81 (42%) | 69 (44%) | 62 (36%) | 90 (26%) |
| Other | 2 (1%) | 0 | 0 | 0 | 0 | 0 | 0 | 0 |
| Missing | 7 (4%) | 18 (10%) | 1 (1%) | 6 (4%) | 8 (4%) | 8 (5%) | 6 (4%) | 17 (5%) |
| Current medication: | ||||||||
| Not on DMARDs | 89 (54%) | n/a | 56 (34%) | 143 (84%) | n/a | n/a | 113 (66%) | |
| Monotherapy | 11 (7%) | 76 (46%) | 25 (15%) | 52 (31%) | ||||
| Combination therapy | 0 | 29 (18%) | 2 (1%) | 2 (1%) | ||||
| Biologic drugs | 65 (39%) | 3 (2%) | 0 | 2 (1%) | ||||
| Missing | 0 | 0 | 0 | 2 (1%) | ||||
Key: AS Ankylosing spondylitis; OA Osteoarthritis; SLE Systemic Lupus Erythematosus; SS Systemic Sclerosis; CP/FM Chronic Pain/ Fibromyalgia;
CHUL chronic hand/upper limb conditions; PSS Primary Sjorgens Syndrome; RA Rheumatoid Arthritis; ISCED International Standard Classification of Education; DMARDs Disease Modifying Anti-Rheumatic Drugs