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. 2017 Oct 23;57(1):140–151. doi: 10.1093/rheumatology/kex322

Table 2.

Measures of clinical outcome, patient reported outcome and patient experience for assessment against quality measures

Outcome or experience Proposed measure

  1. Clinical measures of outcomes

 1A For each ILAR sub-group, what is the median JADAS3 score at different times from the first clinic appointment?
1B What proportion of patients of different ILAR sub-types have uveitis
1C What proportion of patients with enthesitis related arthritis have sacroiliitis

  1. Patient reported outcome measures

 2A For each ILAR subtype, what proportion of children (categorized as never, sometimes, often or most of the time) experience interference with their daily activities due to: fatigue, pain, poor sleep, medication (side effects)?
2B For each ILAR sub-type, what proportion of children (categorized as never, sometimes, often or most of the time) have experienced interference with their ability to participate in the things they like to do (e.g. playing sport, going to the park, playing out, socializing with friends) due to their condition?
2C For each ILAR sub-type, what proportion of children (categorized as never, sometimes, often or most of the time) have felt sad/worried or frustrated?

  1. Patient reported experience measures

 3A What proportion of patients/families felt that their questions and concerns had been answered in a way that they understood (categorized as not at all, a bit, mostly, fully)?
3B What proportion of patients/families understand their treatment plan (categorised as not at all, a bit, mostly, fully)?
3C What proportion of children/families feel supported in between visits (categorized as not at all, a bit, mostly, fully)?
3D What proportion of children/families felt that the environment in which they waited was suitable for those attending the appointment (categorized as not at all, a bit, mostly, fully)?
3E What proportion of patients experienced an unacceptable delay (categorized as no unacceptable delay, <15 min, 15–30 min, 30 min to 1 h, 1–2 h, >2 h)?

JADAS3: 3 variable Juvenile Arthritis Disease Activity Score.