Section heading | Items | Additional items conditional on previous response (summary) | |
Muscular damage items | 1 | Muscle atrophy (clinical) | |
2 | Muscle weakness not attributable to active muscle disease | ||
3 | Muscle dysfunction: decrease in aerobic exercise capacity | ||
4 | VAS for global muscle disease damage | Mark score on 10 cm line* | |
Skeletal damage items | 5 | Joint contractures (due to myositis) | |
6 | Osteoporosis with fracture or vertebral collapse (excluding avascular necrosis) | ||
7 | Avascular necrosis | ||
8 | Deforming arthropathy | ||
9 | VAS for global skeletal disease damage | Mark score on 10 cm line* | |
Cutaneous damage items | 10 | Calcinosis (persistent) | |
11 | Alopecia (scarring) | ||
12 | Cutaneous scarring or atrophy (depressed scar or cutaneous atrophy) | ||
13 | Poikiloderma | ||
14 | Lipoatrophy/lipodystrophy | ||
15 | VAS for global cutaneous disease damage | Mark score on 10 cm line* | |
Gastrointestinal damage items | 16 | Dysphagia (persistent) | |
17 | Gastrointestinal dysmotility, constipation, diarrhoea or abdominal pain (persistent) | ||
18 | Infarction or resection of bowel or other gastrointestinal organs | ||
19 | VAS for global gastrointestinal disease damage | Mark score on 10 cm line* | |
Pulmonary damage items | 20 | Dysphonia (persistent) | |
21 | Impaired lung function due to respiratory muscle damage | ||
22 | Pulmonary fibrosis | ||
23 | Pulmonary hypertension | ||
24 | VAS for global pulmonary disease damage | Mark score on 10 cm line* | |
Cardiovascular damage items | 25 | Hypertension requiring treatment for >6 months | |
26 | Ventricular dysfunction or cardiomyopathy | ||
27 | Assessed in adults (>18 years of age) only: angina or coronary artery bypass | ||
28 | Assessed in adults (>18 years of age) only: myocardial infarction | ||
29 | VAS for global cardiovascular damage | Mark score on 10 cm line* | |
Peripheral vascular damage items | 30 | Tissue or pulp loss | |
31 | Digit loss or limb loss or resection | ||
32 | Venous or arterial thrombosis with swelling, ulceration or venous stasis | ||
33 | Assessed in adults (>18 years of age) only: claudication | ||
34 | VAS for global peripheral vascular disease damage | Mark score on 10 cm line* | |
Pubertal status of patient | 35 | Pubertal assessment completed by physician or by patient (self-assessment) | Tanner score (1–5) |
Endocrine damage items | 36 | Growth failure | |
37 | Delay in development of secondary sexual characteristics (>2 SD beyond mean for age) | ||
38 | Hirsutism or hypertrichosis | ||
39 | Irregular menses | ||
40 | Primary or secondary amenorrhoea | ||
41 | Diabetes mellitus | ||
42 | In adults (>18 years of age): infertility—male or female | ||
43 | In adults (>18 years of age): sexual dysfunction | ||
44 | VAS for global endocrine disease damage | Mark score on 10 cm line* | |
Ocular damage items | 45 | Cataract resulting in visual loss | |
46 | Visual loss, other, not secondary to cataract | ||
47 | VAS for global ocular disease damage | Mark score on 10 cm line* | |
Infection damage items | 48 | Chronic infection | |
49 | Multiple infections | ||
50 | VAS for global infection damage | Mark score on 10 cm line* | |
Malignancy | 51 | Presence of malignancy | |
52 | VAS for malignancy (complications) | Mark score on 10 cm line* | |
Other damage | 53 | Death | Include cause and date of death |
54 | VAS for any other damage | Mark score on 10 cm line* and add details of other damage | |
Global disease assessment damage | 55 | Physician VAS of global disease damage | Mark score on 10 cm line* |
*0 is inactive or lowest score and 10 is most active or highest score on 10 cm VAS scores.
JDM, juvenile dermatomyositis; VAS, Visual Analogue Scale.