Harmonized Outcome Measures for Use in Non-Small Cell Lung Cancer Patient Registries and Clinical Practice

Area of Science:

• Oncology
• Health Services Research
• Data Science

Background:

• Lung cancer is a leading cause of cancer death globally, necessitating improved data collection for research.
• Existing data collection efforts lack standardization, hindering robust research infrastructure.
• Harmonizing outcome measures is essential for addressing critical questions in lung cancer treatment.

Purpose of the Study:

• To develop a minimum set of harmonized outcome measures for non-small cell lung cancer (NSCLC).
• To ensure measures are relevant to patients and clinicians and feasible for collection in registries and clinical practice.

Main Methods:

• Seventeen lung cancer registries were invited to submit outcome measures.
• A stakeholder panel, including diverse experts and patient advocates, categorized and harmonized definitions using the Outcome Measures Framework (OMF).

Main Results:

• A minimum set of 8 broadly relevant outcome measures were identified across OMF categories: patient survival, clinical response, events of interest, and resource utilization.
• Definitions for these 8 measures were harmonized.
• Consensus was not reached on a single validated instrument for patient-reported outcomes.

Conclusions:

• Consistent collection of these harmonized measures can build research infrastructure and learning health systems.
• This standardization will support new research and ultimately improve patient outcomes in non-small cell lung cancer.