Study No Date Data JSLE - MINI BILAG (Page 1 of 4)
Study No Date Data JSLE - MINI BILAG (Page 1 of 4)
Study No Date Data JSLE - MINI BILAG (Page 1 of 4)
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Retrospective Prospective<br />
<strong>Study</strong> <strong>No</strong> <strong>Date</strong> / /<br />
<strong>Data</strong><br />
General<br />
* 01 Pyrexia (documented)<br />
* 02 Weight loss - unintentional; >5%<br />
* 03 Lymphadenopathy/splenomegaly<br />
* 04 Fatigue/malaise/lethargy<br />
* 05 Anorexia/nausea/vomiting<br />
Mucocutaneous<br />
* 06 Maculopapular eruption - severe active<br />
(or discoid/bullous)<br />
* 07 Maculopapular eruption - mild<br />
* 08 Active discoid lesions:<br />
generalised/extensive<br />
* 09 Active discoid lesions: localised<br />
include lupus pr<strong>of</strong>undus<br />
* 10 Alopecia (severe, active)<br />
11 Alopecia (mild)<br />
* 12 Panniculitis (severe)<br />
* 14 Angio-oedema<br />
* 15 Extensive mucosal ulceration<br />
16 Small mucosal ulcers<br />
* 17 Malar erythema<br />
* 18 Subcutaneous nodules<br />
* 19 Perniotic skin lesions<br />
20 Peri-ungual erythema<br />
21 Swollen fingers Y N<br />
22 Sclerodactyly Y N<br />
23 Calcinosis Y N<br />
<strong>JSLE</strong> - <strong>MINI</strong> <strong>BILAG</strong> (<strong>Page</strong> 1 <strong>of</strong> 4)<br />
For all questions use codes: 1 = improving; 2 = same; 3 = worse; 4 = new; 0 = not present (except for Y/N and numeric questions)<br />
13 Panniculitis (mild)<br />
24 Telangiectasia Y N<br />
25 Splinter haemorrhages Y N<br />
Neurological<br />
* 26 Impaired level <strong>of</strong> consciousness<br />
27 Cognitive dysfunction<br />
* 28 Acute psychosis or delirium<br />
or confusional state<br />
29 Psychosis<br />
* 30 Seizures<br />
31 Status epilepticus<br />
* 32 Stroke or stroke syndrome<br />
33 Cerebral vasculitis<br />
* 34 Aseptic meningitis<br />
* 35 Mononeuritis<br />
* 36 Ascending or transverse myelitis<br />
37 Demyelinating syndrome<br />
38 Myelopathy<br />
39 Acute inflammatory demyelinating<br />
polyradiculoneuropathy<br />
* 40 Peripheral or cranial neuropathy<br />
41 Cranial neuropathy<br />
42 Plexopathy<br />
43 Polyneuropathy<br />
44 Autonomic disorder<br />
* 45 Disc swelling/cytoid bodies<br />
* 46 Chorea<br />
Survey : 7120 Serial : 1 <strong>Page</strong> : 1<br />
UK <strong>JSLE</strong> <strong>Study</strong> Group © - Version 2
* 47 Cerebellar ataxia<br />
48 Movement disorder<br />
* 49 Headache severe, unremitting<br />
50 Episodic migrainous headaches<br />
* 54 Organic depressive illness<br />
* 57 Organic brain syndrome<br />
Musculoskeletal<br />
* 58 Definite myositis<br />
60 Mild chronic myositis<br />
61 Myalgia<br />
* 62 Severe polyarthritis - with loss <strong>of</strong> function<br />
* 63 Arthritis<br />
64 Arthralgia<br />
* 65 Tendonitis<br />
66 Tendon contractures<br />
and fixed deformity<br />
Y N<br />
67 Aseptic necrosis Y N<br />
<strong>JSLE</strong> - <strong>MINI</strong> <strong>BILAG</strong> (<strong>Page</strong> 2 <strong>of</strong> 4)<br />
For all questions use codes: 1 = improving; 2 = same; 3 = worse; 4 = new; 0 = not present (except for Y/N and numeric questions)<br />
Neurological continued<br />
51 Tension headache<br />
52 Cluster headache<br />
53 Headache from IC hypertension<br />
55 Mood disorder (depression/mania)<br />
56 Anxiety disorder<br />
59 Myositis with incomplete criteria<br />
Cardiovascular & Respiratory<br />
* 68 Pleuropericardial pain<br />
* 69 Dyspnoea<br />
* 70 Cardiac failure<br />
* 71 Friction rub<br />
* 72 Effusion (pericardial or pleural)<br />
73 Mild or intermittent chest pain<br />
* 74 Progressive CXR<br />
changes - lung fields<br />
* 75 Progressive CXR<br />
changes - heart size<br />
* 76 ECG evidence <strong>of</strong><br />
pericarditis/myocarditis<br />
* 77 Cardiac arrhythmias including<br />
tachycardia (>100 no fever)<br />
Y N<br />
Y N<br />
Y N<br />
Y N<br />
* 78 Pulmonary function fall by > 20% Y N<br />
* 79 Cytohistological evidence <strong>of</strong><br />
inflammatory lung disease<br />
80 Myocarditis - mild<br />
81 New valvular dysfunction<br />
82 Cardiac tamponade<br />
83 Pleural effusion with dyspnoea<br />
84 Pulmonary haemorrhage/vasculitis<br />
85 Interstitial alveolitis/pneumonitis<br />
86 Shrinking lung syndrome<br />
87 Aortitis<br />
88 Coronary vasculitis<br />
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UK <strong>JSLE</strong> <strong>Study</strong> Group © - Version 2<br />
Y N
Vasculitis<br />
* 89 Major cutaneous vasculitis<br />
including ulcers<br />
* 90 Major abdominal crisis due to vasculitis<br />
* 91 Recurrent thromoembolism<br />
(excluding strokes)<br />
92 Raynaud's<br />
93 Livido reticularis<br />
* 94 Superficial phlebitis<br />
* 95 Minor cutaneous vasculitis (nailfold<br />
vasculitis, digital vasculitis, purpura, urticaria)<br />
* 96 Thromboembolism<br />
(excl stroke) 1st episode<br />
Renal<br />
97 Systolic blood pressure mmHg<br />
98 Diastolic blood pressure mmHg<br />
Y N<br />
99 Severe hypertension Y N<br />
100 Proteinuria on Dipstix<br />
(- = 0, + = 1, ++ = 2, +++ = 3)<br />
101 ACR (Levels 1-4, see glossary)<br />
103 Newly documented proteinuria (level 4) Y N<br />
104 Nephrotic range proteinuria Y N<br />
105 Creatinine (plasma/serum)<br />
106a GFR: EDTA clearance<br />
(exact) (mls/min.1.73m 2 )<br />
106b GFR: ht/creat ratio<br />
(estimate)<br />
107 Active urinary sediment Y N<br />
108 Histological evidence <strong>of</strong> active<br />
nephritis within 3 months<br />
Y N<br />
<strong>JSLE</strong> - <strong>MINI</strong> <strong>BILAG</strong> (<strong>Page</strong> 3 <strong>of</strong> 4)<br />
For all questions use codes: 1 = improving; 2 = same; 3 = worse; 4 = new; 0 = not present (except for Y/N and numeric questions)<br />
102a Urinary Alb/Cr ratio<br />
(mg/mmol Cr)<br />
102b Urinary Protein/Cr<br />
ratio (mg/mmol Cr)<br />
Height (needed for GFR calculation) (cm)<br />
Gastrointestinal<br />
109 Peritonitis<br />
110 Abdominal serositis or ascites<br />
111 Lupus enteritis/colitis<br />
112 Malabsorption<br />
113 Protein losing enteropathy<br />
114 Intestinal pseudo-obstruction<br />
115 Hepatitis<br />
116 Acute cholecystitis<br />
117 Acute pancreatitis<br />
Ophthalmic<br />
118 Orbital inflammation with myositis and/or<br />
extra ocular muscle swelling and/or proptosis<br />
119 Keratitis - severe<br />
120 Keratitis - mild<br />
121 Anterior uveitis<br />
122 Posterior uveitis/retinal vasculitis - severe<br />
123 Posterior uveitis/retinal vasculitis - mild<br />
124 Episcleritis<br />
125 Scleritis - severe<br />
126 Scleritis - mild<br />
127 Retinal/choroidal vaso-occlusive disease<br />
128 Isolated cotton-wool spots (cytoid bodies)<br />
129 Optic neuritis<br />
130 Anterior ischaemic optic neuropathy<br />
Survey : 7120 Serial : 1 <strong>Page</strong> : 3<br />
UK <strong>JSLE</strong> <strong>Study</strong> Group © - Version 2
Haematology<br />
131 Haemoglobin g/dl<br />
132 Total white cell count x 10 9 /l<br />
133 Neutrophils x 10 9 /l<br />
134 Lymphocytes x 10 9 /l<br />
135 Platelets x 10 9 /l<br />
136 Evidence <strong>of</strong> active haemolysis Y N<br />
137 Coomb's test positive Y N<br />
138 Evidence <strong>of</strong> circulating anticoagulant Y N<br />
Other measures <strong>of</strong> disease activity<br />
ESR (mm/hr)<br />
CRP<br />
C3 (g/l)<br />
C4 (g/l)<br />
IgG<br />
IgA<br />
IgM<br />
dsDNA done (IU/ml)<br />
<strong>JSLE</strong> - <strong>MINI</strong> <strong>BILAG</strong> (<strong>Page</strong> 4 <strong>of</strong> 4)<br />
Treatment<br />
Hydroxychloroquine<br />
Current dose Revised dose<br />
Azathioprine<br />
Mycophenolate<br />
Cyclosporin A<br />
Prednisolone<br />
Methotrexate<br />
IVIG<br />
Rituximab (mg/m 2 )<br />
Cyclophosphamide<br />
IV IV<br />
Oral Oral<br />
Subcut Subcut<br />
IV Oral<br />
IV MePred in last 3 months < 5 pulses >= 5 pulses<br />
Other Aspirin Bisphosphonate<br />
drugs<br />
Oral contraceptive pill<br />
Angiotensin receptor blocker<br />
Ca ++ blockers Statins<br />
Function<br />
Patient CHAQ/HAQ Global assessment on CHAQ/HAQ<br />
(0: Very well - 100 - Very ill)<br />
Current Total number <strong>of</strong><br />
dose Pulses to date<br />
Cumulative Total number <strong>of</strong><br />
dose Pulses to date<br />
ACEi Diuretic<br />
Physicians<br />
global score Very well Very ill<br />
Survey : 7120 Serial : 1 <strong>Page</strong> : 4<br />
UK <strong>JSLE</strong> <strong>Study</strong> Group © - Version 2
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