Long-term toxicity monitoring via electronic patient-reported outcomes in patients receiving chemotherapy.
OBJECTIVE
In cancer treatment trials, clinicians traditionally report patient toxicity symptoms. Alternatively, patients could provide this information directly.


METHODS
The Common Terminology Criteria for Adverse Events (CTCAE) is the mandated instrument for tracking patient toxicity symptoms in National Cancer Institute (NCI)-sponsored cancer treatment trials. We adapted CTCAE symptom items into patient language and uploaded these to an online platform. Lung cancer outpatients receiving chemotherapy were invited to self-report selected symptoms at visits via waiting area computers or optional home access. Symptom reports were printed for nurses at visits, but no instructions were given with regard to use of this information.


RESULTS
From June 2005 through March 2006, 125 patients were invited to participate, and 107 chose to enroll. Mean length of participation was 42 weeks (range, 1 to 71 weeks), by which time 35% died. The average number of clinic visits was 12 (range, 1 to 40 visits). At each consecutive visit, most patients (mean, 78%) logged in without significant attrition. Reasons for failure to log in included having no reminder and having inadequate time. Although 76% of enrollees had home computers, only 15% self-reported from home. Satisfaction with the system was high (90%), but only 51% felt communication was improved. All participating nurses understood the reports and felt this information was useful for clinical decisions, documentation, and discussions. However, only one of seven nurses discussed reports with patients frequently, with insufficient time being the most common barrier to discussions.


CONCLUSIONS
Online patient self-reporting is a feasible long-term strategy for toxicity symptom monitoring during chemotherapy, even among patients with advanced cancer and high symptom burdens. However, without explicit reminders and clinician feedback, patients demonstrated limited voluntary interest in self-reporting between visits.
Department of Epidemiology and Biostatistics, and the Office of the Physician-in-Chief, Memorial Sloan-Kettering Cancer Center, New York, NY 10021, USA. basche@mskcc.org
Ethan
E
Basch
Alexia
A
Iasonos
Allison
A
Barz
Ann
A
Culkin
Mark G
MG
Kris
David
D
Artz
Paul
P
Fearn
John
J
Speakman
Rena
R
Farquhar
Howard I
HI
Scher
Mary
M
McCabe
Deborah
D
Schrag
D016907:Adverse Drug Reaction Reporting Systems; D000368:Aged; D000970:Antineoplastic Agents / Q000009:adverse effects*; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D008175:Lung Neoplasms / Q000188:drug therapy*; D008297:Male; D008875:Middle Aged; D009862:Online Systems; D017063:Outcome Assessment, Health Care; D010349:Patient Compliance; D017060:Patient Satisfaction; D011795:Surveys and Questionnaires
D000970:Antineoplastic Agents