Original Article

Exploring the Patient Experience with Patient-Reported Outcomes: A Qualitative, Multistakeholder Study

Authors: Shehzad K. Niazi, MD, Alexandra J. Greenberg-Worisek, PhD, MPH, Jennifer Smith, MFA, Allison Matthews, M.Arch, Patricia (Patty) Boyum, MHI, Lisa Nordan, MBA-IT, Emily Brennan, MPH, Aaron Spaulding, PhD, Andrea Cheville, MD

Abstract

Objectives: Although the literature provides guidance regarding patient-reported outcome (PRO) implementation barriers, patients’ perspectives are underreported. This study aimed to improve the understanding of patient experiences with PRO tools through examining perceptions of and attitudes toward PROs and expectations of data use after collection.

Methods: Ethnographic human-centered design approaches were used to conduct free-form interviews. Two case studies of existing PRO use in clinics also were examined. Unstructured thematic analyses were performed using notes taken during these interviews.

Results: Patients generally reported a good understanding of the need for PRO collection, both for research and clinical use. Many expected that results would be acted upon by the clinicians promptly. Thematic analyses identified the following patient perception topics: transparency, individualization to patient needs, timely response, different “identities” while accessing care locally compared with at a destination center, and preference for brief PROs.

Conclusions: Design and implementation of PRO assessments into patient care should include the patients as key end users. Transparency of the purpose for data collection is critical for broader patient adoption. Ensuring that only necessary and sufficient data are collected for clinical action, and associated research may help minimize burden and maximize patient participation.

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