Patient-generated outcomes, questions and concerns: Quantitative and open text methods and relationships with palliative care referrals in advanced ovarian cancer.

Abstract

259 Background: Remotely entered patient-reported outcomes, questions and concerns in an open-text format offer opportunity for communication to providers. However, is there a benefit beyond quantitative questionnaire items? The electronic Self-Report Assessment and Care (eSAC) was implemented for patients with advanced ovarian cancer undergoing treatment in ambulatory care at a Pacific Northwest tertiary care medical center and was shown to increase rates of palliative care referrals. The purpose of this study was to analyze open text entries along with quantitative symptom and quality of life reports exploring content consistency between the two reporting methods and palliative care (PC) referrals. Methods: Adult patients with advanced or recurrent ovarian cancer were invited to participate after an in-person clinic visit and complete a baseline report. Participants were prompted to complete a report 5 days prior to every clinic visit. Following completion of web-based symptom and quality of life issues (SQI) questionnaires, participants selected the two most bothersome SQI from a list of their moderate-to-severe level (MSL) responses. Just after, the participants saw, “If there is anything else you would like to discuss, or any questions you have for your care team, please type them in the box below.” Any MSL response to pain and/or quality of life items triggered a note to the provider on the summary report, “Based on this patient’s responses, a palliative care referral is recommended.” The one-page report, including all quantitative item responses and the text entries, was hand-delivered to the provider at each clinic visit. Text entries were analyzed for consistency with the quantitative bothersome SQI and frequencies of PC referrals were calculated. Results: A total of 134 enrolled and of the 120 participants submitting at least one report, 57 (48%) reported symptoms or quality of life issues at the MSL and made 108 text entries during the study. In 26 (24%) of the text entries, participants further discussed the two most bothersome MSL, 35 (32%) addressed one MSL and 47 (44%) entries addressed completely different issues. For those who provided no text entries and triggered the PC recommendation, only 5/21 (24%) received a referral. Those who created text entries and triggered were referred in 17/33 (52%) cases. Conclusions: The inconsistency and uniqueness between quantitative and text entry approaches to assessing SQI suggest that both methods are necessary for a comprehensive patient-generated report. Communication beyond quantitative scores may prompt the consideration of a PC referral.