Box 2.

Standardised codebook used by two independent coders

Codes used
  • Symptoms and signs

  • Recurrent episodes

  • Tests

  • Underlying cause

  • Seeking medical advice

  • Relative’s involvement

  • Approach by the healthcare professional

  • Challenges for the healthcare professional

  • Participants’ confidence

  • Participants’ preferred healthcare professional to see

  • Seeing different healthcare professional

  • Pathways in different countries

  • Participants’ expert knowledge

  • Healthcare professional’s trust in the patient

  • Participants not agreeing with the healthcare professional

  • Solutions to help

  • Participants’ concern about a diagnosis

  • Wanting an early diagnosis

  • Delayed or incorrect diagnosis

  • Lymphoedema as a challenge

  • Other comorbidities as a challenge