Patient Burden Index (PBI): A Universal Measure of Treatment, Care, and System Burden

The Patient Burden Index (PBI) is a brief, universal instrument designed to quantify the burden patients experience during medical care. It measures three domains—treatment burden, care burden, and system burden—using a 7‑item, 0–4 Likert scale. The instrument was developed through literature review, patient interviews, expert consultation, and cognitive testing to ensure clarity, relevance, and applicability across specialties. This project provides open access to the full PBI instrument, scoring manual, implementation materials, and validation protocol. These resources support clinical use, quality‑improvement initiatives, and research on patient experience and system burden. The PBI is intended to help clinicians identify high‑burden patients, guide care‑coordination efforts, and inform health‑system redesign aimed at reducing administrative and logistical strain. All materials are available under a Creative Commons Attribution 4.0 (CC BY 4.0) license to enable broad adoption and adaptation. Future updates will include psychometric validation results and cross‑context implementation findings. If you want, I can also prepare a shorter 2–3 sentence version for the OSF “About” field or a README.md for the top of the project.