The electronic self report assessment and intervention for cancer: promoting patient verbal reporting of symptom and quality of life issues in a randomized controlled trial

Donna L Berry, Fangxin Hong, Barbara Halpenny, Anne Partridge, Erica Fox, Jesse R Fann, Seth Wolpin, William B Lober, Nigel Bush, Upendra Parvathaneni, Dagmar Amtmann, Rosemary Ford, Donna L Berry, Fangxin Hong, Barbara Halpenny, Anne Partridge, Erica Fox, Jesse R Fann, Seth Wolpin, William B Lober, Nigel Bush, Upendra Parvathaneni, Dagmar Amtmann, Rosemary Ford

Abstract

Background: The electronic self report assessment - cancer (ESRA-C), has been shown to reduce symptom distress during cancer therapy The purpose of this analysis was to evaluate aspects of how the ESRA-C intervention may have resulted in lower symptom distress (SD).

Methods: Patients at two cancer centers were randomized to ESRA-C assessment only (control) or the Web-based ESRA-C intervention delivered to patients' homes or to a tablet in clinic. The intervention allowed patients to self-monitor symptom and quality of life (SxQOL) between visits, receive self-care education and coaching to report SxQOL to clinicians. Summaries of assessments were delivered to clinicians in both groups. Audio-recordings of clinic visits made 6 weeks after treatment initiation were coded for discussions of 26 SxQOL issues, focusing on patients'/caregivers' coached verbal reports of SxQOL severity, pattern, alleviating/aggravating factors and requests for help. Among issues identified as problematic, two measures were defined for each patient: the percent SxQOL reported that included a coached statement, and an index of verbalized coached statements per SxQOL. The Wilcoxon rank test was used to compare measures between groups. Clinician responses to problematic SxQOL were compared. A mediation analysis was conducted, exploring the effect of verbal reports on SD outcomes.

Results: 517 (256 intervention) clinic visits were audio-recorded. General discussion of problematic SxQOL was similar in both groups. Control group patients reported a median 75% of problematic SxQOL using any specific coached statement compared to a median 85% in the intervention group (p = .0009). The median report index of coached statements was 0.25 for the control group and 0.31 for the intervention group (p = 0.008). Fatigue, pain and physical function issues were reported significantly more often in the intervention group (all p < .05). Clinicians' verbalized responses did not differ between groups. Patients' verbal reports did not mediate final SD outcomes (p = .41).

Conclusions: Adding electronically-delivered, self-care instructions and communication coaching to ESRA-C promoted specific patient descriptions of problematic SxQOL issues compared with ESRA-C assessment alone. However, clinician verbal responses were no different and subsequent symptom distress group differences were not mediated by the patients' reports.

Trial registration: NCT00852852; 26 Feb 2009.

Figures

Figure 1
Figure 1
Health outcomes model adapted to these analyses.
Figure 2
Figure 2
Exemplar of online coaching regarding self-care and communication.
Figure 3
Figure 3
Analytic sample of 517 audio recorded clinic visits.
Figure 4
Figure 4
Percentage of problematic SxQOL issues reported as coached, by study group. For each SxQOL issue, the number of patients' visits (n control, n intervention) in which the issue was defined as a problem is shown and the percentage of visits in which the patient or caregiver made unprompted reports of severity, pattern, or alleviating/aggravating factors, or requested help for the SxQOL issue. (*) denotes a p-value of ≤ .05 for the difference between study groups in reporting percentage.

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