Table 2

Key differences between opinions of patients/parents and healthcare professionals

ItemPatients’ opinionParents’ opinionHealthcare professionals’ opinionOutcome from consensus meetingComments/reasons for retaining in dataset
Raynaud’s phenomenonEquivocalEquivocalConsensus inConsensus inImportant for overlap phenotypes especially myositis–scleroderma
Use of an age-appropriate patient/parent measure of functionEquivocalEquivocalConsensus inConsensus inRetained (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 lifeEquivocalEquivocalConsensus inConsensus in
Parent/patient global assessment VASEquivocalEquivocalConsensus inConsensus in
Physician global assessment VASEquivocalEquivocalConsensus inConsensus in
Fatigue due to myositis (within PROM)EquivocalConsensus inConsensus inConsensus in—as part of a PROMQuantifiable outcome measure
Questions related to physiotherapyEquivocalEquivocalConsensus inConsensus inIncreasingly a defined therapeutic intervention; omitting would be akin to not asking about medicines
Pubertal assessmentEquivocalEquivocal(Not asked)*Consensus inImportant outcomes of disease activity/damage/adverse effects of medication
Height of patientEquivocalConsensus inConsensus inConsensus in
Weight of patientEquivocalConsensus inConsensus inConsensus in
Items related to major organ involvement—cardiac/pulmonary/gastrointestinalEquivocalConsensus inConsensus inConsensus inImportant implications for disease severity, treatment and prognosis
Specific questions about painConsensus inConsensus in(Not asked)Consensus outThought to be part of standard care (questions that would be asked by a clinician in a clinic consultation)
Specific questions about medicinesConsensus inConsensus in(Not asked)Consensus out
Irritability due to JDMEquivocalConsensus in(Not asked)Consensus outToo 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.