Table 1.

Participant characteristics (survey: n = 186; interview: n = 23)

Characteristic	Number (survey, n = 186)	% (survey)	Number (interview, n = 23)	% (interview)
Age band (years)
18–29	17	10	3	13
30–39	27	15	1	4
40–49	53	28	7	30
50–59	52	28	7	30
60–69	28	15	4	17
70+	5	3	1	4
Diagnosis
SLE	155	83	19	83
UCTD/unspecified CTD	12	6	4	17
Sjögrens	6	3	0	0
MCTD	4	2	0	0
Cutaneous/discoid lupus	4	2	0	0
Overlap	6	3	0	0
Current main medicationsa
HCQ	128	69	14	61
Oral steroids	61	33	13	57
Steroid injections	43	23	6	26
MMF	28	15	4	17
MTX	27	15	3	13
AZA	19	10	4	17
Biologic	12	7	2	9
CYC	6	3	0	0
Frequency of reporting non-adherence to their doctor
Always	78	53	10	59
Usually	19	13	2	12
Sometimes	15	10	2	12
Occasionally	10	7	0	0
Never	26	18	3	18
Missing	38		5
Delays to diagnosis
<1 year	40	25	3	14
1–2 years	23	14	4	18
3–5 years	22	14	1	5
6–9 years	18	11	6	27
10+ years	57	36	8	36
Missing/unsure or non-quantitative response given	26		1

^aInfusions/injections were classified as ‘current’ if they were within the previous 12 months. MCTD: mixed connective tissue disease; UCTD: undifferentiated connective tissue disease.