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

Purpose We previously reported on the feasibility of a Web-based system to capture patient-reported outcomes (PROs) in the immediate postoperative period. The purpose of this study was to update the experience of these patients and assess patient and provider satisfaction and feedback regarding the system. Methods This is a prospective cohort study of patients scheduled to undergo 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. Email alerts were sent to study nurses when concerning patient responses were entered. The patient and the nurse assessments of STAR’s usefulness were measured via an exit survey. Results The study enrolled 96 eligible patients. Of these, 71 patients (74%) completed at least four of seven total sessions. Of the patients who completed the exit satisfaction survey, 98% found STAR easy to use; 84% found it useful; and 82% would recommend it to other patients. Despite positive feedback from patients, clinical personnel found that the STAR system increased their current workload without enhancing patient care. Conclusions Application of an electronic program for PROs in those recovering from major gynecologic cancer surgery is feasible, and acceptable to most patients. While most clinicians did not find STAR clinically helpful, the majority of patients reported a positive experience with the system and would recommend its use. The program helped many patients feel more empowered in their postoperative recovery.

Patient-Reported Toxicities During Chemotherapy Regimens in Current Clinical Practice for Early Breast Cancer

“…Standardized reporting is now available through the National Cancer Institute's Patient‐Reported Outcomes‐CTCAE (PRO‐CTCAE) scales . Efforts are underway to integrate PRO‐CTCAE measurement into clinical trials , and interest is growing in the implementation and utilization of patient‐reported symptom monitoring in patient‐centered clinical practice . Like CTCAE, the focus of PRO‐CTCAE is continuous symptom monitoring throughout chemotherapy, not just at the beginning and end of chemotherapy.…”

Effectiveness of an internet-based perioperative care programme to enhance postoperative recovery in gynaecological patients: cluster controlled trial with randomised stepped-wedge implementation

“…Despite positive feedback from patients, clinical personnel found that STAR system increased their current workload without enhancing patient care. 43 Although the results of those two feasibility studies are promising, we want to emphasise the importance of targeting the entire surgical pathway from the early preoperative phase, starting when the indication for surgery is set, until the late postoperative phase, ending with full recovery and resumption of all daily activities, in which our own internet-based care programme is unique.…”

A Review of AI and Data Science Support for Cancer Management

“…PROs were added to this table when used in 3 or more papers. In this review, the most commonly used validated PRO questionnaire for collecting HRQoL data is the EORTC QLQ-C30, used in 28% of the 50 included papers [10][11][12][13][14][15][16][17][18][19][20][21][22]. It is a European widely used core generic questionnaire for cancer patients, and comprises most dimensions of wellbeing as described by Linton et al [6], excluding spiritual wellbeing and personal circumstances.…”

“…The Functional Assessment of Cancer Therapy -General (FACT-G), also a cancer-specific HRQoL questionnaire is more frequently used in America, but was less frequently used for data collection --in 6% of included papers [36][37][38]. The second most used questionnaire in this review was Patient-Reported Outcomes Measurement Information System (PROMIS), a set of person-centered measures (enabled by CAT and IRT), used in 16% of the papers [12,14,16,[22][23][24][25][26]. Third most used (8%) questionnaire was the EQ-5D-5L [19[21,27-30] questionnaire that can be used to compute Quality-adjusted Life Years (QALY's), a generic measure of disease burden, including both the quality and the quantity of life lived.…”

“…These modules are specific to tumour site, treatment modality, or a HRQoL dimension, to be administered in addition to the core questionnaire (EORTC QLQ-C30) [39]. Furthermore, the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) was a commonly used (10%) questionnaire to capture information on symptomatic adverse events [11,12,28,40,41]. The PRO-CTCAE Item Library includes 124 items representing 78 symptomatic toxicities drawn from the Common Terminology Criteria for Adverse Events (CTCAE), reported by patients [42].…”