Issues in the design of Internet-based systems for collecting patient-reported outcomes
Background and objectives
Although there is a growing interest in using patient-reported outcomes (PRO) to monitor disease progression and/or therapeutic response, to improve care, and to screen for physical or psychosocial problems in routine clinical practice, PRO instruments can be difficult to administer, score, and interpret in this setting. Internet-based approaches to PRO collection may help overcome these obstacles. This paper discusses the rationale for using the Internet for routine PRO collection, summarizes relevant literature and ongoing projects, and raises several key design and development issues that should guide further efforts in this area.
A small number of Internet-based PRO collection applications have been or are currently being developed. The major characteristics of several of these projects are reviewed and summarized. Successful Internet-based PRO collection applications must address patient and clinician-specific needs related to workflow and to the way in which results are presented. A growing number of instruments have been adapted for and evaluated in a web-based format.
Collecting PROs via the Internet has the potential to overcome many of the challenges associated with efforts to routinely use PROs in the clinical encounter.
KeywordsElectronic health record Internet Patient-reported outcomes Web-based
Bone Marrow Therapy
Computerized Adaptive Testing
Child Health and Development Interactive System
Common Terminology Criteria for Adverse Events
Diagnostic and Statistical Manual for Primary Care
Electronic Data Collection
Electronic Health Record
- EORTC-QLQ C30
European Organization for Research and Treatment of Cancer Quality of Life Questionnaire
Fred Hutchinson Cancer Research Center
Hospital Anxiety and Depression Scale
Health Insurance Portability and Accountability Act
Health-Related Quality of Life
Hematopoietic Stem Cell Transplantation
Item Response Theory
Interactive Voice Response System
Memorial Sloan Kettering Cancer Center
National Cancer Institute
Patient Reported Outcome(s)
Patient Reported Outcome Measurement Information System
Supportive Care Needs Survey
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