Patient Preference Assessment Reveals Disease Aspects Not Covered by Recommended Outcomes in Polymyositis and Dermatomyositis

Table 1

Characteristics of 28 PM/DM patients.

	Value
Age, years, median (range)	57 (28–74)
Sex, female/male, 𝑛	15/13
Diagnosis, PM/DM, 𝑛	11/17
Disease duration, years, median (range)	9 (1–32)
Educational level, 𝑛 (%)
(i) Low	14 (50)
(ii) High	14 (50)
Employment status, 𝑛
(i) Part-time/full-time job	18
(ii) Retired	7
(iii) Sick-leave	3
MYOACT Global, VAS, 0–100 mm	1 (0–5)b
MYOACT Extra, VAS, 0–100 mm	0 (0–6)c
MDI Global VAS, 0–100 mm	18 (8–23)c
CPK, μcat/l	1.8 (1.3–2.6)b
FI-2, mean (0–100%)	49 (27–56)b
MMT-8, 0–80	77 (72–80)b
MAP, 1–7	3 (2–4)
HAQ, 0–3.00	0.50 (0.13–1.00)a
MACTAR, 19–39	27 (23–29)
PGA, VAS, 0–100 mm	44 (26–59)d

Values are median (quartiles) unless otherwise indicated. aOne missing case; btwo missing cases: cthree missing cases; done case excluded. Low educational level; up to and including vocational training, and high educational level: higher vocational and/or university education. MACTAR: MacMaster Toronto Arthritis Patient Preference Disability Questionnaire, MAP: Myositis Activities Profile, FI-2: Functional Index 2, VAS: Visual Analogue Scale, PGA: patients’ assessment of disease impact on well-being, HAQ: Health Assessment Questionnaire, MYOACT Global: physician's assessment of global disease activity, MYOACT Extra: physician's assessment of global extra skeletal muscle disease activity, MDI Global: myositis damage index global, MMT-8: Manuel Muscle Test-in 8 muscle groups, and CPK: Serum levels of creatine phosphokinase micro cat/litre.