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