• Southern medical journal · Sep 2022

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

    • Shehzad K Niazi, Alexandra J Greenberg-Worisek, Jennifer Smith, Allison Matthews, Patricia Patty Boyum, Lisa Nordan, Emily Brennan, Aaron Spaulding, and Andrea Cheville.
    • From the Department of Psychiatry & Psychology, the Division of Health Care Delivery Research, and Strategic Alliances, Mayo Clinic, Jacksonville, Florida, the Department of Health Sciences Research, Innovation & Design, and the Department of Physical Medicine and Rehabilitation, Mayo Clinic, Rochester, Minnesota.
    • South. Med. J. 2022 Sep 1; 115 (9): 653-657.

    ObjectivesAlthough 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.MethodsEthnographic 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.ResultsPatients 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.ConclusionsDesign 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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