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

Table 3.

Patient/carer reported outcome and experience measure themes and sub-themes

PROM PREM
Main theme Sub-theme Main theme Sub-theme
Physical well-being
  • Medication and treatment

  • Physical effects

  • Pain

  • Fatigue/sleep

Communication
  • Consistency of advice/care

  • Relationship with team

  • Empathy and respect from staff

Information/education
  • Ease of understanding

  • Education

  • Financial advice

Social well-being
  • Family impact

  • Education effects

  • Lifestyle

Access/coordination of care
  • Journey to diagnosis

  • Access to all disciplines as required

  • Access to treatments

  • Ease of contact with health care professional

  • Appointment times

Needs/involvement
  • Emotional support

  • Involving young person in their healthcare

  • Transition experience

Emotional well-being
  • Uncertainty

  • Confidence

  • Frustration

  • Support

  • Invisibility

  • Transition

Environment
  • Hospital/clinic environment

  • Waiting room environment

  • Convenience of hospital location

  • Travel burden

Confidence
  • Confidence/trust in medical team

  • Confidence/trust in treatment plan

PREM, patient and carer reported experience measure; PROM, patient and carer reported outcome measure.