Real-world experience with electronic patient reported outcomes and missing items: "Don't ask me irrelevant questions".
Rosett, HA; Locke, SC; Wolf, SP; Herring, K; Samsa, GP; Troy, JD; LeBlanc, TW
Published in: Journal of Clinical Oncology
99 Background: Electronic patient-reported outcomes (ePROs) can improve quality of life and prolong survival in patients with cancer by enhancing the detection and tracking of unmet supportive care needs. However, there remain unanswered questions about how to handle missing ePRO data. We hypothesized that patients may skip specific questions they feel do not apply to them. We aimed to examine the relationship between patient demographics and missing items in a real-world ePRO dataset. Methods: We utilized a prospectively collected database of ePROs from oncology clinics administering Patient Care Monitor 2.0 (PCM), a validated symptom survey of 78 items for men and 86 for women. We tabulated the frequency of missing items by item and domain (emotional, functional and symptom-related), and examined these by age, gender, education, race and marital status. Results: In 20,986 encounters there were responses to at least 1 PCM item from 6,933 patients. On average just 1% of items were skipped per encounter. By domain, 12.3% of functional, 8.4% of symptom-related, and 1.6% of emotional constructs contained at least one missing item. The highest frequency of item non-response was seen in older patients (>60yo) and those with high school education or less. The most frequently skipped items included: “attend a paid job” (10.7%), “reduced sexual enjoyment” (3.8%), and “running” (3.7%). These questions may be less relevant to older individuals, who, for example, quit running years earlier or are retired. Men had less missingness overall, except for “cooks for self” and “house work”, which may reflect traditional gender roles in the Southeast US. Conclusions: In a real-world ePRO implementation, items pertaining to more universal issues for cancer patients, like emotional well-being, have much lower rates of missingness, especially compared to functional items like “attend a paid job.” These results suggest that patients differentially complete ePROs based on perceived question relevance to them. The underlying driver behind individual item non-response may itself be an important data point in clinical care, warranting further study and discussion during clinic visits.
