An analysis of missing items in real-world electronic patient reported outcomes data: implications for clinical care
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ORIGINAL ARTICLE
An analysis of missing items in real-world electronic patient reported outcomes data: implications for clinical care Heather A. Rosett 1 & Susan C. Locke 2 & Steven P. Wolf 3 & Kris W. Herring 2 & Gregory P. Samsa 4 & Jesse D. Troy 1,2 & Thomas W. LeBlanc 1 Received: 4 September 2019 / Accepted: 2 February 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
Abstract Purpose Utilization of electronic patient-reported outcomes (ePROs) in the clinic can improve quality of life and prolong survival in cancer care. However, there remain unanswered questions regarding trends in missing data and the potential effect on real-time patient care. Methods This study utilized a prospectively collected dataset of ePROs from oncology clinics that administered the Patient Care Monitor 2.0 (PCM), a validated symptoms survey assessing 78 items for men, and 86 for women. We tabulated the frequency of missing items, by item and domain (emotional, functional and physical symptom-related), and examined these by age, gender, education, race and marital status. Results Within 20,986 encounters, there were responses to at least 1 PCM item from 6933 unique patients. The highest frequency of missing answers occurred for: “attend a paid job” (10.7%), “reduced sexual enjoyment” (3.8%), and “run” (3.7%). By domain, 12.3% of functional, 8.4% of physical symptom-related, and 1.6% of emotional constructs contained at least one missing item. For functional and physical symptom-related items, missingness was most common in patients >60 years old. Conclusion The frequency of missingness was highest for functional items, like attending a paid job, suggesting that some respondents (e.g., retirees without a paid job) skipped questions that were less applicable to them. More universal issues for cancer patients, such as emotional well-being, had much lower frequencies of missingness. This suggests differential item completion that warrants further study to understand the inherent drivers. Identifying causes of missingness could improve the clinical utility of ePROs and highlight opportunities to personalize care. Keywords Patient-reported outcomes . Supportive care . Oncology . Quality of life
Introduction Each person who faces a cancer diagnosis will have a unique, lived experience of illness and treatment. Eliciting, understanding, and improving the symptoms associated with each patient’s experience is one of the critical challenges for a cancer care team. Patient-reported outcome (PRO) measures are one
* Thomas W. LeBlanc [email protected] 1
Duke University School of Medicine, Durham, NC 27710, USA
2
Duke Cancer Institute, Durham, NC 27710, USA
3
Duke University Medical Center, Durham, NC 27708, USA
4
Duke Department of Biostatistics and Bioinformatics, Durham, NC, USA
tool to help address this challenge, wherein the patient’s voice is sometimes otherwise lost amid competing priorities in cancer care [1]. Collection of PROs using standardized questionnaires provides patients with a mechanism to directly
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