abstract
- A qualitative study was undertaken to understand the impact of omitted health concepts in existing patient-reported outcome (PRO) instruments for health-related quality of life (HR-QOL) evaluation following head and neck (H&N) cancer reconstruction. Twenty-six patients were interviewed. Patients described a broad range of symptoms. Oral competence, rhinorrhea, facial sensation, smile, vision and eye discharge are missing from existing PRO instruments. Altered appearance was a major stressor; both function and appearance changes had a negative psychosocial impact leading to social isolation and embarrassment. This framework is the foundation for development of a more complete PRO instrument, the FACE-Q Oncology.