Integrating Patient-Reported Outcomes in Clinical Care - Opportunities and Roadblocks From the Patient Perspective: A Scoping Review
Author(s)
Ipek Ozer Stillman, MBA, MSc1, Boyle Brandon, MSc1, Karen Lencoski, MSc1, Meni Styliadou, BA2, Jeff Muir, MSc, DC, MSc (Clin Epi)3, Grammati Sarri, MSc, PhD4.
1Takeda, Boston, MA, USA, 2Takeda, Zurich, Switzerland, 3Cytel, Toronto, ON, Canada, 4Executive Research Principal, Cytel, London, United Kingdom.
1Takeda, Boston, MA, USA, 2Takeda, Zurich, Switzerland, 3Cytel, Toronto, ON, Canada, 4Executive Research Principal, Cytel, London, United Kingdom.
OBJECTIVES: The explosion of digital technologies and focus on patient-centered care enable the integration of patient-reported outcomes (PRO) in clinical care. PROs are routinely requested in healthcare decision-making but evidence respecting their use in routine clinical care is fragmented. This scoping review summarized how patients perceive the use of PROs (i.e., benefits of and barriers to) in their interactions with clinicians and overall care, across disease areas and settings.
METHODS: Embase and MEDLINE were searched in November 2024 for publications dating to 2014. Eligible papers were full-text commentaries and primary/secondary research on patient benefits, impact in clinical care management at the patient (individual) level and patient-perceived barriers. PRO psychometric properties and analysis were beyond the review scope. Supplementary searches employed a snowballing method, and websites of key organizations were manually searched. Thematic analysis by PRO category, outcomes, study design, and other contextual factors was conducted. Screening and extraction were conducted by a trained reviewer and validated by a senior reviewer.
RESULTS: After de-duplication, 1,303 articles were screened at the title/abstract level; 14 were included for full-text review and 14 were identified through snowballing. In total, 12 articles were included (theoretical analyses, data driven analyses, reviews [n=3 each], commentaries [n=1], expert survey [n=1]). Publications were heterogeneous in terms of objectives and settings. Across the included studies, the greatest PRO impact was on improving patient-clinician communication, information provision, encouraging positive health behaviors and enhancing patient self-management. Barriers related to accessibility issues (language proficiency, health and digital literacy) and administrative burden (time to complete PROs) were noted.
CONCLUSIONS: This scoping review demonstrated the consensus on the positive impact of PRO data in improving healthcare from the patient perspective. PRO implementation strategies in clinical practice by removing structural barriers that may perpetuate existing health disparities will ensure equitable improvement in patient health.
METHODS: Embase and MEDLINE were searched in November 2024 for publications dating to 2014. Eligible papers were full-text commentaries and primary/secondary research on patient benefits, impact in clinical care management at the patient (individual) level and patient-perceived barriers. PRO psychometric properties and analysis were beyond the review scope. Supplementary searches employed a snowballing method, and websites of key organizations were manually searched. Thematic analysis by PRO category, outcomes, study design, and other contextual factors was conducted. Screening and extraction were conducted by a trained reviewer and validated by a senior reviewer.
RESULTS: After de-duplication, 1,303 articles were screened at the title/abstract level; 14 were included for full-text review and 14 were identified through snowballing. In total, 12 articles were included (theoretical analyses, data driven analyses, reviews [n=3 each], commentaries [n=1], expert survey [n=1]). Publications were heterogeneous in terms of objectives and settings. Across the included studies, the greatest PRO impact was on improving patient-clinician communication, information provision, encouraging positive health behaviors and enhancing patient self-management. Barriers related to accessibility issues (language proficiency, health and digital literacy) and administrative burden (time to complete PROs) were noted.
CONCLUSIONS: This scoping review demonstrated the consensus on the positive impact of PRO data in improving healthcare from the patient perspective. PRO implementation strategies in clinical practice by removing structural barriers that may perpetuate existing health disparities will ensure equitable improvement in patient health.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
P35
Topic
Patient-Centered Research
Topic Subcategory
Patient Behavior and Incentives, Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas