Overarching principles and points to consider for including the perspective of young patients with IA into PROMs
| Overarching principles | LoA Mean (SD) | |||
| A | IA has a considerable impact on all aspects of the life of young people, and PROMs are useful to measure part of this impact | 9.69 (±0.63), 100%≥8 | ||
| B | The value of PROMs is optimised when young people with IA are informed and empowered | 9.92 (0.28), 100%≥8 | ||
| C | PROMs are useful when integrated in the communication between young people with IA and rheumatologists/other health professionals who are involved in their care. | 9.77 (0.44), 100%≥8 | ||
| D | PROMs inform shared decision-making for young people with IA. | 9.31 (0.18), 92%≥8 | ||
| Points to consider | LoE | Strength of recommendation | LoA Mean (SD) | |
| 1 | Young people with IA should be informed about the purpose and relevance of PROMs. | 5 | D | 9.85 (0.37), 100%≥8 |
| 2 | Young people with IA should have the possibility to access their personal PROM data. | 5 | D | 9.31 (1.18), 85%≥8 |
| 3 | Healthcare providers and young people with IA should discuss the results of PROMs and integrate them into shared decision making. | 5 | D | 9.78 (0.44), 100%≥8 |
| 4 | Different PROMs assess various domains and should therefore be used to cover a broad spectrum of the disease. | 5 | D | 9.15 (1.82), 85%≥8 |
| 5 | Healthcare providers should ascertain the willingness of young people with IA to talk about issues such as body image and life plans, and discuss these domains respecting the patients’ preferences. | 5 | D | 9.54 (1.13), 92%≥8 |
| 6 | The assessment of a young person with IA should encompass items and domains of his/her daily life such as psychosocial issues, participation in social activities, education/work, sports and using technologic devices. | 5 | C | 9.46 (1.20), 92%≥8 |
| 7 | The schedule of PROMs assessment should be agreed on by the healthcare provider and the young person with IA, to balance frequency versus inconvenience. | 5 | D | 9.46 (1.05), 92%≥8 |
| 8 | Online and e-solutions for PROMs should be used when possible and convenient for young people with IA. | 5 | D | 9.92 (0.28), 100%≥8 |
Numbers in the column ‘LoA’ indicate the mean (SD) of the LoA, and the percentage of task force members with a LoA of at least 8 (0–10); based on the Oxford Centre for Evidence-Based Medicine classification
IA, inflammatory arthritis; LoA, level of agreement; LoE, level of evidence; PROMs, patient-reported outcome measures.