Key differences between opinions of patients/parents and healthcare professionals
| Item | Patients’ opinion | Parents’ opinion | Healthcare professionals’ opinion | Outcome from consensus meeting | Comments/reasons for retaining in dataset |
| Raynaud’s phenomenon | Equivocal | Equivocal | Consensus in | Consensus in | Important for overlap phenotypes especially myositis–scleroderma |
| Use of an age-appropriate patient/parent measure of function | Equivocal | Equivocal | Consensus in | Consensus in | Retained (with the option of using alternative tools to allow for country-specific requirements) since these are standard outcome measures for research in JDM |
| Use of an age-appropriate patient/parent measure of quality of life | Equivocal | Equivocal | Consensus in | Consensus in | |
| Parent/patient global assessment VAS | Equivocal | Equivocal | Consensus in | Consensus in | |
| Physician global assessment VAS | Equivocal | Equivocal | Consensus in | Consensus in | |
| Fatigue due to myositis (within PROM) | Equivocal | Consensus in | Consensus in | Consensus in—as part of a PROM | Quantifiable outcome measure |
| Questions related to physiotherapy | Equivocal | Equivocal | Consensus in | Consensus in | Increasingly a defined therapeutic intervention; omitting would be akin to not asking about medicines |
| Pubertal assessment | Equivocal | Equivocal | (Not asked)* | Consensus in | Important outcomes of disease activity/damage/adverse effects of medication |
| Height of patient | Equivocal | Consensus in | Consensus in | Consensus in | |
| Weight of patient | Equivocal | Consensus in | Consensus in | Consensus in | |
| Items related to major organ involvement—cardiac/pulmonary/gastrointestinal | Equivocal | Consensus in | Consensus in | Consensus in | Important implications for disease severity, treatment and prognosis |
| Specific questions about pain | Consensus in | Consensus in | (Not asked) | Consensus out | Thought to be part of standard care (questions that would be asked by a clinician in a clinic consultation) |
| Specific questions about medicines | Consensus in | Consensus in | (Not asked) | Consensus out | |
| Irritability due to JDM | Equivocal | Consensus in | (Not asked) | Consensus out | Too non-specific and variable interpretation in different countries |
*Added to patient/parent questionnaire after discussion in patient/parent focus groups.
JDM, juvenile dermatomyositis; PROM, patient/parent-reported outcome measure; VAS, Visual Analogue Scale.