Electronic patient-reported outcomes from home in patients recovering from major gynecologic cancer surgery: A prospective study measuring symptoms and health-related quality of life

Abstract

Objectives: A pilot study suggested that the use of a web-based system to capture patient-reported outcomes (PROs) is feasible and highly accepted by patients in the acute postoperative period. The objective of this study was to further demonstrate its feasibility, measure patient assessments of its usefulness, and clinician perceptions of its value. Methods: This is a prospective cohort study of patients scheduled for laparotomy for presumed gynecologic malignancy. Patients completed a web-based Symptom Tracking and Reporting (“STAR”) questionnaire preoperatively and weekly during a 6-week postoperative period. The survey consisted of the patient adaptation of the National Cancer Institute’s CTCAE 3.0 and EORTC QLQ-C30 3.0. Email alerts were sent to clinicians when concerning patient responses were entered. The patient and the clinician assessments of STAR’s usefulness were measured via an exit survey. Results: The study enrolled 120 patients. Of these, 69 patients (57.5%) completed at least 4 of 7 total sessions. The CTC generated 84 alerts, which resulted in 28 contacts and 2 ED referrals. One hundred and twelve patient-reported symptoms generated an alert; the most common were poor performance status (15%), nausea (14%), and fatigue (12%). Fifty-one patients (42.5%) completed the exit satisfaction survey; 86% found STAR easy to use and 73% found it useful; 63% reported that STAR improved the ability to remember symptoms at office visits; 57% reported improved discussions with the provider; 43% reported overall improved quality of care; 63% felt more in control of their care by using the STAR system; and 71% would recommend it to other patients and 61% would like to continue use. Most clinicians did not find STAR helpful. Seventy-five percent did not find the self-assessments of pain and quality of life accurate. All clinicians surveyed reported that the STAR system increased their workload. Conclusions: Application of an electronic program for PROs in those recovering from major gynecologic cancer surgery is feasible and acceptable for most patients with a computer and home internet access. Poor performance status, nausea, and fatigue were the most common distressing symptoms reported. The majority of patients reported a positive experience with the system and would recommend its use. The program helped many to feel more empowered in their postoperative recovery. Clinicians reported a less positive experience, possibly associated with the increased work.