A Collaborative Approach for the Development of a Standardized Set of Patient-Centered Outcomes in Head and Neck Cancers

Abstract

Introduction: Head and neck cancers remain a significant health burden worldwide. Standardizing the care provided to these patients through the systematic measurement of established indicators is key to improve their outcomes. The aim of this study was to establish a relevant set of outcome indicators in this condition and identify measurement tools and requirements to do so.Methods: One scientific committee and two regional working groups worked in a stepwise manner to narrow down an initial list of potential outcome indicators retrieved from an exhaustive literature review to a smaller set of outcome indicators according to their clinical practice. This was assessed by one representative of a head and neck cancer patient association until a final set of indicators was reached.Results: A total of 164 outcome indicators comprising case-mix, outcomes, and adverse events dimensions were retrieved from the literature. These were reduced to a working set of 79 outcome indicators by the Scientific Committee and divided into seven categories including demographics, clinical status, tumor-related parameters, nutritional status, treatment, health and quality of life parameters and survival. Subsequently, these indicators were further reduced to a set of 50 indicators by the regional working groups and to a set of 49 indicators by the final Scientific Committee assessment. Finally, the discussed indicators were appraised by a head and neck cancer patient association, which added the ‘rehabilitation’ category, a key parameter to these patients.Conclusion: An initial set of outcome indicators for head and neck cancer was systematically developed aiming to standardize the care provided to these patients across institutions at national level and identify measurement tools and requirements to measure those indicators. This standard set should be continuously improved and consistently adopted in the different clinical and national settings.