Issues in the design of Internet-based systems for collecting patient-reported outcomes
Purchase on Springer.com
$39.95 / €34.95 / £29.95*
Rent the article at a discountRent now
* Final gross prices may vary according to local VAT.
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.
- Ellwood, P. M. (1988). Shattuck lecture–outcomes management. A technology of patient experience. The New England Journal of Medicine, 318, 1549–1556. CrossRef
- List of 1000 instruments in alphabetical order. Retrieved 8/29, 2006, from http://www.proqolid.org/public/list/a.html.
- Bielli, E., Carminati, F., La Capra, S., Lina, M., Brunelli, C., & Tamburini, M. (2004). A wireless health outcomes monitoring system (WHOMS): Development and field testing with cancer patients using mobile phones. BMC Medical Informatics and Decision Making, 4, 7. CrossRef
- Detmar, S. B., Muller, M. J., Schornagel, J. H., Wever, L. D., & Aaronson, N. K. (2002). Health-related quality-of-life assessments and patient-physician communication: A randomized controlled trial. JAMA, 288, 3027–3034. CrossRef
- Greenhalgh, J., Long, A. F., & Flynn, R. (2005). The use of patient reported outcome measures in routine clinical practice: Lack of impact or lack of theory? Social Science & Medicine, 60, 833–843. CrossRef
- Donaldson, M. (2006). Using patient-reported outcomes in clinical oncology practice: Benefits, challenges and next steps. Expert Review of Pharmacoeconomics & Outcomes Research, 6, 87–95. CrossRef
- Detmar, S. B., & Aaronson, N. K. (1998). Quality of life assessment in daily clinical oncology practice: A feasibility study. European Journal of Cancer, 34, 1181–1186. CrossRef
- McLachlan, S. A., Allenby, A., Matthews, J., Wirth, A., Kissane, D., Bishop, M., Beresford, J., & Zalcberg, J. (2001). Randomized trial of coordinated psychosocial interventions based on patient self-assessments versus standard care to improve the psychosocial functioning of patients with cancer. Journal of Clinical Oncology, 19, 4117–4125.
- Wu, A. W., Cagney, K. A., & St John, P. D. (1997). Health status assessment. Completing the clinical database. Journal of General Internal Medicine, 12, 254–255. CrossRef
- Velikova, G., Brown, J. M., Smith, A. B., & Selby, P. J. (2002). Computer-based quality of life questionnaires may contribute to doctor-patient interactions in oncology. British Journal of Cancer, 86, 51–59. CrossRef
- Taenzer, P., Bultz, B. D., Carlson, L. E., Speca, M., DeGagne, T., Olson, K., Doll, R., & Rosberger, Z. (2000). Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients. Psychooncology, 9, 203–213. CrossRef
- Athale, N., Sturley, A., Skoczen, S., Kavanaugh, A., & Lenert, L. (2004). A web-compatible instrument for measuring self-reported disease activity in arthritis. The Journal of Rheumatology, 31, 223–228.
- McDaniel, A. M., Benson, P. L., Roesener, G. H., & Martindale, J. (2005). An integrated computer-based system to support nicotine dependence treatment in primary care. Nicotine & Tobacco Research, 7(Suppl 1), S57–S66. CrossRef
- Saleh, K. J., Radosevich, D. M., Kassim, R. A., Moussa, M., Dykes, D., Bottolfson, H., Gioe, T. J., & Robinson, H. (2002). Comparison of commonly used orthopaedic outcome measures using palm-top computers and paper surveys. Journal of Orthopaedic Research, 20, 1146–1151. CrossRef
- Anhoj, J., & Moldrup, C. (2004). Feasibility of collecting diary data from asthma patients through mobile phones and SMS (short message service): Response rate analysis and focus group evaluation from a pilot study. Journal of Medical Internet Research, 6, e42. CrossRef
- Crawley, J. A., Kleinman, L., & Dominitz, J. (2000). User preferences for computer administration of quality of life instruments. Drug Information Journal, 34, 137.
- Jacobsen, P. B., Davis, K., & Cella, D. (2002). Assessing quality of life in research and clinical practice. Oncology (Williston.Park), 16, 133–139.
- Bliven, B. D., Kaufman, S. E., & Spertus, J. A. (2001). Electronic collection of health-related quality of life data: Validity, time benefits, and patient preference. Quality of Life Research, 10, 15–22. CrossRef
- Wright, E. P., Selby, P. J., Crawford, M., Gillibrand, A., Johnston, C., Perren, T. J., Rush, R., Smith, A., Velikova, G., Watson, K., Gould, A., & Cull, A. (2003). Feasibility and compliance of automated measurement of quality of life in oncology practice. Journal of Clinical Oncology, 21, 374–382. CrossRef
- Bushnell, D. M., Martin, M. L., & Parasuraman, B. (2003). Electronic versus paper questionnaires: A further comparison in persons with asthma. The Journal of Asthma, 40, 751–762. CrossRef
- Bayliss, M. S., Dewey, J. E., Dunlap, I., Batenhorst, A. S., Cady, R., Diamond, M. L., & Sheftell, F. (2003). A study of the feasibility of internet administration of a computerized health survey: The headache impact test (HIT). Quality of Life Research, 12, 953–961. CrossRef
- Pealer, L. N., Weiler, R. M., Pigg, R. M. Jr, Miller, D., & Dorman, S. M. (2001). The feasibility of a web-based surveillance system to collect health risk behavior data from college students. Health Education & Behavior, 28, 547–559. CrossRef
- Hanscom, B., Lurie, J. D., Homa, K., & Weinstein, J. N. (2002). Computerized questionnaires and the quality of survey data. Spine, 27, 1797–1801. CrossRef
- Wilson, A. S., Kitas, G. D., Carruthers, D. M., Reay, C., Skan, J., Harris, S., Treharne, G. J., Young, S. P., & Bacon, P. A. (2002). Computerized information-gathering in specialist rheumatology clinics: An initial evaluation of an electronic version of the short form 36. Rheumatology (Oxford), 41, 268–273. CrossRef
- Bush, N., Donaldson, G., Moinpour, C., Haberman, M., Milliken, D., Markle, V., & Lauson, J. (2005). Development, feasibility and compliance of a web-based system for very frequent QOL and symptom home self-assessment after hematopoietic stem cell transplantation. Quality of Life Research, 14, 77–93. CrossRef
- Boyes, A., Newell, S., & Girgis, A. (2002). Rapid assessment of psychosocial well-being: Are computers the way forward in a clinical setting? Quality of Life Research, 11, 27–35. CrossRef
- Hambleton, R. K. (2005). Applications of item response theory to improve health outcomes assessment: developing item banks, linking instruments, and computer-adaptive testing. In J. Lipscomb, C. C. Gotay, & C. Snyder (Eds.), Outcomes assessment in cancer: Measures, methods and applications (pp. 445–464). Cambridge: Cambridge University Press.
- Litaker, D. (2003). New technology in quality of life research: Are all computer-assisted approaches created equal? Quality of Life Research, 12, 387–393. CrossRef
- Velikova, G., Wright, E. P., Smith, A. B., Cull, A., Gould, A., Forman, D., Perren, T., Stead, M., Brown, J., & Selby, P. J. (1999). Automated collection of quality-of-life data: A comparison of paper and computer touch-screen questionnaires. The Journal of Clinical Oncology, 17, 998–1007.
- More Americans turning to web for health information, poll shows. The Wall Street Journal Online (2006).
- Liederman, E. M., & Morefield, C. S. (2003). Web messaging: A new tool for patient-physician communication. Journal of the American Medical Informatics Association, 10, 260–270. CrossRef
- Casebeer, L., Bennett, N., Kristofco, R., Carillo, A., & Centor, R. (2002). Physician internet medical information seeking and on-line continuing education use patterns. The Journal of Continuing Education in the Health Professions, 22, 33–42. CrossRef
- Bennett, N. L., Casebeer, L. L., Kristofco, R. E., & Strasser, S. M. (2004). Physicians’ internet information-seeking behaviors. Journal of Continuing Education in the Health Professions, 24, 31–38. CrossRef
- Howsyourhealth.org. from www.howsyourhealth.org.
- Child health and development interactive system (CHADIS) & CHADIS EMR. Retrieved 11/2, 2006, from http://www.childhealthcare.org/marketing/datasheet.shtml.
- Sturner, R., Morrel, T., & Howard, B. J. (2004). Mental health diagnoses among children being seen for child health supervision visits: Typical practice and DSM-PC diagnoses. Presented at Pediatric Academic Society Annual Meeting, 441.
- Sturner, R., Morrel, T., & Howard, B. (2005). Preliminary validation of the DSM-PC. Journal of Developmental and Behavioral Pediatrics, 24, 393–394.
- Sturner, R., Howard, B. J., Morrel, T., & Rogers-Senuta, K. (2003). Validation of a computerized parent questionnaire for identifying child mental health disorders and implementing DSM-PC. Presented at Pediatric Academic Society Annual Meeting, 3801.
- Basch, E., Artz, D., Dulko, D., Scher, K., Sabbatini, P., Hensley, M., Mitra, N., Speakman, J., McCabe, M., & Schrag, D. (2005). Patient online self-reporting of toxicity symptoms during chemotherapy. Journal of Clinical Oncology, 23, 3552–3561. CrossRef
- Cohen, S. R., Boston, P., Mount, B. M., & Porterfield, P. (2001). Changes in quality of life following admission to palliative care units. Palliative Medicine, 15, 363–371. CrossRef
- Cull, A., Gould, A., House, A., Smith, A., Strong, V., Velikova, G., Wright, P., & Selby, P. (2001). Validating automated screening for psychological distress by means of computer touchscreens for use in routine oncology practice. British Journal of Cancer, 85, 1842–1849. CrossRef
- Taenzer, P. A., Speca, M., Atkinson, M. J., Bultz, B. D., Page, S., Harasym, P., & Davis, J. L. (1997). Computerized quality-of-life screening in an oncology clinic. Cancer Practice, 5, 168–175.
- Hodge, J. G. Jr. (2003). Health information privacy and public health. The Journal of Law, Medicine & Ethics, 31, 663–671. CrossRef
- Lumpkin, J. R. (2000). e-Health, HIPAA, and beyond. Health Affairs (Millwood) 19, 149–151. CrossRef
- Garner, J. C. (2003). Final HIPAA security regulations: A review. Managed Care Quarterly, 11, 15–27.
- Fairfield, K. M., Chen, W. Y., Colditz, G. A., Emmons, K. M., & Fletcher, S. W. (2004). Colon cancer risk counseling by health-care providers: Perceived barriers and response to an internet-based cancer risk appraisal instrument. Journal of Cancer Education, 19, 95–97. CrossRef
- Sittig, D. F. (2003). Results of a content analysis of electronic messages (email) sent between patients and their physicians. BMC Medical Informatics and Decision Making, 3, 11–15. CrossRef
- Katz, S. J., Nissan, N., & Moyer, C. A. (2004). Crossing the digital divide: Evaluating online communication between patients and their providers. The American Journal of Managed Care, 10, 593–598.
- Cella, D., Gershon, R., Lai, J. S., & Choi, S. (2007). The future of outcomes measurement: Item banking, tailored short-forms, and computerized adaptive assessment. Quality of Life Research, 16, 133–141. CrossRef
- Thissen, D., Reeve, B. B., Bjorner, J. B., & Chang, C. H. (2007). Methodological issues for building item banks and computerized adaptive scales. Quality of Life Research, 16, 109–119. CrossRef
- Berry, D. L., Trigg, L. J., Lober, W. B., Karras, B. T., Galligan, M. L., Austin-Seymour, M., & Martin, S. (2004). Computerized symptom and quality-of-life assessment for patients with cancer part I: Development and pilot testing. Oncology Nursing Forum, 31, E75–E83. CrossRef
- Bensley, R. J., & Lewis, J. B. (2002). Analysis of internet-based health assessments. Health Promotion Practice, 3, 463–476. CrossRef
- Mullen, K. H., Berry, D. L., & Zierler, B. K. (2004). Computerized symptom and quality-of-life assessment for patients with cancer part II: Acceptability and usability. Oncology Nursing Forum, 31, E84–E89. CrossRef
- NCI announces new research-based web design guidelines for improving health information web sites. 2005. Retrieved 11/2, 2006, from http://www.cancer.gov/newscenter/usabilityguidelines.
- Williams, P., Nicholas, D., Huntington, P., & McLean, F. (2002). Surfing for health: User evaluation of a health information website. part one: Background and literature review. Health Information and Libraries Journal, 19, 98–108. CrossRef
- Brundage, M., Feldman-Stewart, D., Leis, A., Bezjak, A., Degner, L., Velji, K., Zetes-Zanatta, L., Tu, D., Ritvo, P., & Pater, J. (2005). Communicating quality of life information to cancer patients: A study of six presentation formats. Journal of Clinical Oncology, 23, 6949–6956. CrossRef
- Bjorner, J. B., Chang, C. H., Thissen, D., & Reeve, B. B. (2007). Developing tailored instruments: Item banking and computerized adaptive assessment. Quality of Life Research, 16, 95–108. CrossRef
- Issues in the design of Internet-based systems for collecting patient-reported outcomes
Quality of Life Research
Volume 16, Issue 8 , pp 1407-1417
- Cover Date
- Print ISSN
- Online ISSN
- Springer Netherlands
- Additional Links
- Electronic health record
- Patient-reported outcomes
- Industry Sectors
- Author Affiliations
- 1. Department of Health Policy and Management, Bloomberg School of Public Health, The Johns Hopkins University, 624 North Broadway, 6th Floor, Baltimore, MD, 21205-1901, USA
- 2. Center for Health Research, Geisinger Medical Center, Danville, PA, USA
- 3. Department of Medicine, School of Medicine, The Johns Hopkins University, Baltimore, MD, USA