OBJECTIVES: A systematic, standardized collection of health outcomes during patient treatment and follow-up is a key step towards an effective and efficient health care system. A holistic approach, integrating all stakeholders’ perspectives, is necessary to ensure the best quality care. This project aimed to define a standard set of health outcomes for patients with squamous cell carcinoma of head and neck (SCCHN) management.

METHODS: The project was led and coordinated by a scientific committee (SC) and comprised: (1) literature review (to identify variables used during SCCHN treatment and follow-up); (2) 1^st-SC meeting (to select those variables to be presented during the nominal groups-NG); (3) four NG (n=36 experts) and four interviews with patients (to reach consensus on the key variables to be included in the standard set); and (4) 2^nd-SC meeting (to review the results of the NG ensuring consensus on those variables where consensus was not reached among them).

RESULTS: Experts reached consensus to include in the standard set: treatment-related (treatment intent and type, response to treatment, treatment toxicity/complication, treatment completion), degree of health (performance status, patient-reported health status, pain, dysphonia, feeding and speech limitations, body image alteration, tracheotomy), survival (overall and progression-free survival, cause of death), nutritional (weight, nutritional intervention), and others variables (smoking status, alcohol consumption, patient satisfaction with aftermath care, employment status). Experts agreed to collect at baseline factors that may affect the health outcomes, but which cannot be controlled as part of the management of the condition (case-mix variables) including demographic, tumor-related, clinical and nutritional factors.

CONCLUSIONS: This project may pave the way to standardize the collection of health outcomes in SCCHN and promote the incorporation of patients' perspective in its management. In turn, the information provided through the systematic compilation of this set of variables may define strategies to achieve high-quality and patient-centered care.