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Major concepts and categories generated from patient and caregiver interviews
| Concept | Category |
|---|---|
| Diagnostic journey and symptom management |
Diagnostic journey Symptom recognition Symptom management Understanding of disease Coping strategies Experience with treatment |
| Burden of disease |
Clinical burden Humanistic burden Economic burden Burden on caregivers |
| Healthcare resource utilization | None |
| Support and advocacy |
Source of support Access to support Knowledge sharing Advocacy |
