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.

This content is limited to qualifying members.

Existing members, please login first

If you have an existing account please login now to access this article or view purchase options.

Purchase only this article ($25)

Create a free account, then purchase this article to download or access it online for 24 hours.

Purchase an SMJ online subscription ($75)

Create a free account, then purchase a subscription to get complete access to all articles for a full year.

Purchase a membership plan (fees vary)

Premium members can access all articles plus recieve many more benefits. View all membership plans and benefit packages.

References

1. Porter ME, Lee TH. From volume to value in health care: the work begins. JAMA 2016;316:1047–1048.
 
2. Porter ME. What is value in health care? N Engl J Med 2010;363:2477–2481.
 
3. DeWalt DA, Rothrock N, Yount S, et al. Evaluation of item candidates: the PROMIS qualitative item review. Med Care 2007;45(5 suppl 1):S12–S21.
 
4. Obbarius A, van Maasakkers L, Baer L, et al. Standardization of health outcomes assessment for depression and anxiety: recommendations from the ICHOM Depression and Anxiety Working Group. Qual Life Res 2017; 26:3211–3225.
 
5. Ong WL, Schouwenburg MG, van Bommel ACM, et al. A standard set of value-based patient-centered outcomes for breast cancer: the International Consortium for Health Outcomes Measurement (ICHOM) initiative. JAMA Oncol 2017;3:677–685.
 
6. McNamara RL, Spatz ES, Kelley TA, et al. Standardized outcome measurement for patients with coronary artery disease: consensus from the International Consortium for Health Outcomes Measurement (ICHOM). J Am Heart Assoc 2015;4:e001767.
 
7. Philpot LM, Barnes SA, Brown RM, et al. Barriers and benefits to the use of patient-reported outcome measures in routine clinical care: a qualitative study. Am J Med Qual 2018;33:359–364.
 
8. Basch E, Snyder C. Overcoming barriers to integrating patient-reported outcomes in clinical practice and electronic health records. Ann Oncol 2017;28:2332–2333.
 
9. Pennings JS, Devin CJ, Khan I, et al. Prediction of Oswestry Disability Index (ODI) using PROMIS-29 in a national sample of lumbar spine surgery patients. Qual Life Res 2019;28:2839–2850.
 
10. Niazi SK, Spaulding A, Vargas E, et al. Feasibility study of three-phase implementation of ICHOM (International Consortium for Health Outcomes Measurement) Depression and Anxiety standard set in an outpatient consultation-liaison psychiatry practice. Psychosomatics 2020;61:8–18.
 
11. Snyder CF, Watson ME, Jackson JD, et al. Patient-reported outcome instrument selection: designing a measurement strategy. Value Health 2007;10(suppl 2): S76–S85.
 
12. Atkinson TM, Schwartz CE, Goldstein L, et al. Perceptions of response burden associated with completion of patient-reported outcome assessments in oncology. Value Health 2019;22:225–230.
 
13. Kadri O, Jildeh TR, Meldau JE, et al. How long does it take for patients to complete PROMIS scores?: an assessment of PROMIS CAT questionnaires administered at an ambulatory sports medicine clinic. Orthop J Sports Med 2018;6:2325967118791180.
 
14. Wright CV, Goodheart C, Bard D, et al. Promoting measurement-based care and quality measure development: the APA mental and behavioral health registry initiative. Psychol Serv 2020;17:262–270.
 
15. Turvey CL, Lindsay JA, Chasco EE, et al. Current practices in electronic capture of patient-reported outcomes for measurement-based care and the use of patient portals to Support behavioral health. Psychiatr Clin North Am 2019;42:635–647.