Quality of Life Research

, Volume 16, Issue 8, pp 1407–1417 | Cite as

Issues in the design of Internet-based systems for collecting patient-reported outcomes

  • James B. Jones
  • Claire F. Snyder
  • Albert W. Wu
Article

Abstract

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.

Major findings

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.

Conclusions

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.

Keywords

Electronic health record Internet Patient-reported outcomes Web-based 

Abbreviations

BMT

Bone Marrow Therapy

CAT

Computerized Adaptive Testing

CHADIS

Child Health and Development Interactive System

CTCAE

Common Terminology Criteria for Adverse Events

DSM-PC

Diagnostic and Statistical Manual for Primary Care

EDC

Electronic Data Collection

EHR

Electronic Health Record

EQ-5D

EuroQOL 5-D

EORTC-QLQ C30

European Organization for Research and Treatment of Cancer Quality of Life Questionnaire

FHCRC

Fred Hutchinson Cancer Research Center

HADS

Hospital Anxiety and Depression Scale

HIPAA

Health Insurance Portability and Accountability Act

HRQOL

Health-Related Quality of Life

HSCT

Hematopoietic Stem Cell Transplantation

IRT

Item Response Theory

IVR

Interactive Voice Response System

MSKCC

Memorial Sloan Kettering Cancer Center

NCI

National Cancer Institute

PRO

Patient Reported Outcome(s)

PROMIS

Patient Reported Outcome Measurement Information System

SCNS

Supportive Care Needs Survey

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Copyright information

© Springer Science+Business Media B.V. 2007

Authors and Affiliations

  • James B. Jones
    • 1
    • 2
  • Claire F. Snyder
    • 1
    • 3
  • Albert W. Wu
    • 1
    • 3
  1. 1.Department of Health Policy and Management, Bloomberg School of Public HealthThe Johns Hopkins UniversityBaltimoreUSA
  2. 2.Center for Health ResearchGeisinger Medical CenterDanvilleUSA
  3. 3.Department of Medicine, School of MedicineThe Johns Hopkins UniversityBaltimoreUSA

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