Acceptability in cancer outpatients of completing routine assessments of patient reported outcomes of common terminology criteria for adverse events (PRO-CTCAE) versus other patient reported symptom outcome tools

Abstract

Background: Recent trial data demonstrated improved outcomes with real-time patient reported outcome questionnaires (PROQ) symptom assessments using PROCTCAE. However, outside of a clinical trial setting, there is limited information on the factors that affect the completion of PROQ in routine practice. Methods: In outpatient oncology clinics of a comprehensive cancer center (2013- 2016), patients completing a variety of toxicity and symptom tools including PRO CTCAE, pain/physical function, and sleep/fatigue PROQ tools, were also assessed for their willingness to complete such tools regularly. Results: Of 1792 cancer patients across all disease sites, the median age was 60 (range 18-97) years; 56% were female; 74% were Caucasian]; 58% (95% CI: 53-63) were willing to complete PROQs regularly, and 77% (71-83) perceived utility in the PROQs. Only 7% (2-13) reported that answering PROQs made the visit more difficult. However, patients were less willing to complete PRO-CTCAE-based toxicity PROQs [52% (48-58)] than other PROQs [60% (56-63) %; p<0.001]. This difference in willingness remained significant at p<0.001, even after adjusting for other factors associated with less willingness: non-Caucasians (p=0.03); poor performance status/health utility score (p<0.001); palliative treatment intent (p=0.02); longer length of survey (p<0.001); and disease site (prostate and genitourinary cancers were the least willing [42% (37-48)] to complete the questionnaires, while 62% (56-67, p<0.001) breast cancer patients were most willing). Conclusions: Routine assessment using PROQs is associated with approximately 60% acceptability of patients. Though the common socio-demographic factors helped explain some of the variability in acceptability in addition to length of survey and site of cancer, additional research is necessary to determine the lower acceptability rates of PRO-CTCAE-based tools in routine clinical use. Patient educational tools designed with consideration of these factors may improve acceptability, which may allow improved implementation of PROQ into routine practice.