Initially selected candidate health dimensions and their prioritisation ranking by importance
No | Health dimensions* | Mean rank | Median rank | Order by median rank | % patients giving rank 1 to the dimension | % patients giving rank 1–3 to the dimension | % patients giving rank 1–10 to the dimension |
1 | Raynaud | 5.8 | 5 | 1 | 19.4 | 36.1 | 84.3 |
2 | Hand function | 6.7 | 5 | 1 | 8.3 | 25.0 | 78.7 |
3 | Upper GI symptoms | 7.2 | 6 | 2 | 7.4 | 24.1 | 73.1 |
4 | Pain | 6.9 | 6 | 2 | 10.2 | 25.9 | 75.9 |
5 | Fatigue | 6.7 | 6 | 2 | 9.3 | 26.9 | 78.7 |
6 | Lower GI symptoms | 7.8 | 7 | 3 | 10.2 | 24.1 | 69.4 |
7 | Limitation of life choices and activities | 8.3 | 8 | 4 | 4.6 | 20.4 | 66.7 |
8 | Body mobility | 8.7 | 8,5 | 5 | 2.8 | 11.0 | 65.7 |
9 | Breathlessness | 8.6 | 9 | 6 | 12.0 | 27.8 | 52.8 |
10 | Digital ulcers | 9.5 | 10 | 7 | 1.9 | 17.6 | 54.6 |
11 | Anxiety | 10.2 | 10 | 7 | 2.8 | 9.3 | 50.9 |
12 | Dryness | 10.1 | 10 | 7 | 1.9 | 9.3 | 54.6 |
13 | Appearance | 10.3 | 11 | 8 | 3.7 | 9.3 | 49.1 |
14 | Concentration difficulties | 10.9 | 12 | 9 | 1.9 | 9.3 | 39.8 |
15 | Cough | 11.3 | 13 | 10 | 1.9 | 10.2 | 38.9 |
16 | Depression | 11.6 | 13 | 10 | 0.9 | 7.4 | 35.2 |
17 | Calcinosis | 12.5 | 14 | 11 | 0.9 | 6.5 | 31.5 |
*Patients from the prioritisation cohort were asked to rank the dimensions in order of their importance by giving a rank from 1 (most important) to 17 (least important). Each rank could only be used once. The top 10 dimensions with the lowest median rank (highest importance) were selected for the questionnaire. The 10–12th dimension had an equal median rank but the 10th dimension had a higher role for more patients (% giving top rank, last two columns) and was consequently chosen in favour of dimensions 11 and 12. Dimensions included in the final ScleroID questionnaire are bolded.
GI, gastrointestinal; No, number; ScleroID, Systemic Sclerosis Impact of Disease.