Table 1.
Characteristics of included publications
| Characteristics | Inflammatory conditions | |||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| ALL | RA* | JIA | AS | PsA | SS | CD** | UC | Uv | SLE*** (jSLE) | |
| Total number included | 44 | 10 | 2 | 4 | 8 | 2 | 7 | 2 | 1 | 6 (2) |
| Type of publication: | ||||||||||
| Collaborative reports | 34 | 8 | 1 | 3 | 7 | 2 | 6 | 0 | 1 | 4 (2) |
| Regulatory guidance | 10 | 2X | 1e | 1e | 1e | 0 | 1e | 2X | 0 | 2X (0) |
| Patient population: | ||||||||||
| Adults | 37ap | 10ap | – | 4 | 8 | 2 | 5ap | 2ap | 0 | 6ap |
| Paediatric specific | 7 | 0 | 2 | 0 | 0 | 0 | 2 | 0 | 1 | 2 |
| Purpose: | ||||||||||
| Trials and LOS | 43 | 10 | 2 | 3 | 8 | 2 | 7 | 2 | 1 | 6 (2) |
| Routine practice | 8 | 2 | 0 | 2 | 2 | 0 | 1 | 0 | 0 | 0 (0) |
| Registries | 4 | 0 | 0 | 3 | 1 | 0 | 0 | 0 | 0 | 0 (0) |
| Methods: | ||||||||||
| Initial literature or systematic review/database search | 22 | 6 | 0 | 3 | 3 | 1 | 5 | 0 | 1 | 3 (0) |
| Surveys | 9 | 2 | 1 | 1 | 2 | 1 | 0 | 0 | 1 | 0 (1) |
| Interviews/focus groups | 4 | 0 | 0 | 1 | 2 | 0 | 1 | 0 | 0 | 0 (0) |
| Delphi/ NGT/other consensus group meeting | 32 | 8 | 1 | 2 | 6 | 2 | 6 | 0 | 1 | 4 (2) |
| Patient involvement | 14 | 5 | 0 | 2 | 4 | 0 | 3 | 0 | 0 | 0 (0) |
| HCP involvement | 34 | 8 | 1 | 3 | 7 | 2 | 6 | 0 | 1 | 4 (2) |
AS ankylosing spondylitis, CD Crohn’s disease, EMA European Medicines Agency, FDA Food and Drug Administration, HCP health care professionals, ICHOM International Consortium for Health Outcomes Measurement, JIA juvenile idiopathic arthritis, LOS longitudinal observation studies, NGT nominal group technique, PsA psoriatic arthritis, RA rheumatoid arthritis, SLE systemic lupus erythematosus, jSLE juvenile SLE, SS Sjogren’s syndrome, UC ulcerative colitis, uV uveitis
*ICHOM 2018 document for inflammatory arthritis covers RA, PsA, AS and JIA
**Kim 2018 and Ruemmele 2014 referred to both CD and UC (inflammatory bowel disease). To avoid confusion, these have been recorded under CD
***Values in brackets represent the subsets relating to jSLE (under SLE)
eDenotes an EMA publication whilst f represents an FDA document
xSignifies that both EMA and FDA produced documents for the condition
apSignifies the inclusion of publications with mixed patient populations