Computerized Symptom and Quality-of-Life Assessment for Patients With Cancer Part I: Development and Pilot Testing

Donna L. Berry

Lisa J. Trigg

William B. Lober

Bryant T. Karras

Mary L. Galligan

Mary Austin-Seymour

Stephanie Martin

ONF 2007, 31(5), E75-E83. DOI: 10.1188/04.ONF.E75-E83
Purpose/Objectives: To develop and test an innovative computerized symptom and quality-of-life (QOL) assessment for patients with cancer who are evaluated for and treated with radiation therapy.

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    Allenby, A., Matthews, J., Beresford, J., & McLachlan, S.A. (2002). The application of computer touch-screen technology in screening for psychosocial distress in an ambulatory oncology setting. European Journal of Cancer Care, 11, 245-253.
    Andersen, B.L. (1992). Psychological interventions for cancer patients to enhance the quality of life. Journal of Consulting and Clinical Psychology, 60, 552-568.
    Beynon-Davies, P., & Holmes, S. (1998). Integrating rapid application development and participatory design. IEEE Proceedings Software, 145, 105-112.
    Cam, K., & Trigg, L. (2002). Cancer electronic quality of life project: Delivering wireless Web-based technology at the point of care. Unpublished manuscript.
    Carlson, L.E., Speca, M., Hagen, N., & Taenzer, P. (2001). Computerized quality-of-life screening in a cancer pain clinic. Journal of Palliative Care, 17, 46-52.
    Cella, D., Chang, C.H., Lai, J.S., & Webster, K. (2002). Advances in quality of life measurements in oncology patients. Seminars in Oncology, 29(3, Suppl. 8), 60-68.
    Cleeland, C.S. (2000). Cancer-related symptoms. Seminars in Radiation Oncology, 10, 175-190.
    Degner, L.F., & Sloan, J.A. (1995). Symptom distress in newly diagnosed ambulatory cancer patients and as a predictor of survival in lung cancer. Journal of Pain and Symptom Management, 10, 423-431.
    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.
    Dibona, C., Ockman, S., & Stone, M. (Eds.). (1999). Open sources: Voices from the open source revolution. Retrieved January 15, 2004, from
    DiMatteo, M.R., Lepper, H.S., & Croghan, T.W. (2000). Depression is a risk factor for noncompliance with medical treatment: Meta-analysis of the effects of anxiety and depression on patient adherence. Archives of Internal Medicine, 160, 2101-2107.
    Dougherty, D. (2001). LAMP: The open source Web platform. Retrieved May 20, 2002, from
    Faithfull, S. (1995). ‘Just grin and bear it and hope that it will go away': Coping with urinary symptoms from pelvic radiotherapy. European Journal of Cancer Care, 4, 158-165.
    Freier, A.O., Karlton, P., & Kocher, P.C. (1996). The SSL Protocol Version 3.0. Netscape Communications Corporation. Retrieved January 15, 2004, from
    Friedman, B., Kahn, P.H., Jr., & Borning, A. (2003). Value sensitive design: Theory and methods. Retrieved February 1, 2004, from…
    Ganz, P.A. (1995). Impact of quality of life outcomes on clinical practice. Oncology, 9(11, Suppl.), 61-65.
    Given, C.W., Given, B., Azzouz, F., Stommel, M., & Kozachik, S. (2000). Comparison of changes in physical functioning of elderly patients with new diagnoses of cancer. Medical Care, 38, 482-493.
    GNU Project. (2004). GNU Emacs. Retrieved July 27, 2004, from
    Hackos, J., Elser, A., & Hammer, M. (1997). Customer partnering: A new approach to needs analysis. IEEE Transactions on Professional Communication, 40, 102-110.
    Heitkemper, M., Levy, R.L., Jarrett, M., & Bond, E.F. (1995). Interventions for irritable bowel syndrome: A nursing model. Gastroenterology Nursing, 18, 224-230.
    Hinds, P.S., Schum, L., & Srivastava, D.K. (2002). Is clinical relevance sometimes lost in summative scores? Western Journal of Nursing Research, 24, 345-353.
    Howe, D. (Ed.) (2004a). Client. Retrieved January 15, 2004, from
    Howe, D. (Ed.) (2004b). Open source. Retrieved January 15, 2004, from
    Howe, D. (Ed.) (2004c). Wireless. Retrieved January 15, 2004, from
    King, C.R., Haberman, M., Berry, D.L., Bush, N., Butler, L., Dow, K.H., et al. (1997). Quality of life and the cancer experience: The state-of-the-knowledge. Oncology Nursing Forum, 24, 27-41.
    Levine, M.N., & Ganz, P.A. (2002). Beyond the development of quality-of-life instruments: Where do we go from here? Journal of Clinical Oncology, 20, 2215-2216.
    McCorkle, R. (1987). The measurement of symptom distress. Seminars in Oncology Nursing, 3, 248-256.
    McCorkle, R., Cooley, M., & Shea, J. (2000). A user's manual for the symptom distress scale. Unpublished manuscript.
    McCorkle, R., & Quint-Benoliel, J. (1983). Symptom distress, current concerns and mood disturbance after diagnosis of life-threatening disease. Social Science and Medicine, 17, 431-438.
    McCorkle, R., & Young, K. (1978). Development of a symptom distress scale. Cancer Nursing, 1, 373-378.
    McGuire, D.B. (1984). The measurement of clinical pain. Nursing Research, 33, 152-156.
    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, 896.
    MySQL-AB. (2003). MySQL. Retrieved April 1, 2003, from
    National Institutes of Health. (2002, October 26). State-of-the-science conference on symptom management in cancer: Pain, depression, and fatigue. Retrieved January 21, 2003, from
    Netscape. (2003). Secure sockets layer. Retrieved January 15, 2004, from
    Page, G.G., & Ben-Eliyahu, S. (1998). Pain kills: Animal models and neuro-immunological links. Seattle, WA: IASP Press.
    Peruselli, C., Camporesi, E., Colombo, A.M., Cucci, M., Sironi, P.G., Bellodi, M., et al. (1992). Nursing care planning for terminally ill cancer patients receiving home care. Journal of Palliative Care, 8(4), 4-7.
    PHP Group. (2004). What can PHP do? Retrieved January 15, 2004
    Pirl, W.F., & Roth, A.J. (1999). Diagnosis and treatment of depression in cancer patients. Oncology, 13, 1293-1302.
    Piskiel, H. (2000). Rules-driven authorization. Securities Industry Middleware Council, Inc. Retrieved January 15, 2004, from
    Portenoy, R.K., Thaler, H.T., Kornblith, A.B., Lepore, J.M., Friedlander-Klar, H., Coyle, N., et al. (1994). Symptom prevalence, characteristics and distress in a cancer population. Quality of Life Research, 3, 183-189.
    Portenoy, R.K., Thaler, H.T., Kornblith, A.B., Lepore, J.M., Friedlander-Klar, H., Kiyasu, E., et al. (1994). The Memorial Symptom Assessment Scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer, 9, 1326-1336.
    Quality Metrics, Inc. (2004). Comparisons among SF surveys. Retrieved August 10, 2004, from
    Ropka, M.E., Guterbock, T., Krebs, L., Murphy-Ende, K., Stetz, K., Summers, B., et al. (2002). Year 2000 Oncology Nursing Society Research Priorities Survey. Oncology Nursing Forum, 29, 481-491.
    Soni, M.K., & Cella, D. (2002). Quality of life and symptom measures in oncology: An overview. American Journal of Managed Care, 8(18, Suppl.), S560-S573.
    Spinuzzi, C. (2000, June). Investigating the technology-work relationship: A critical comparison of three qualitative field methods. Paper presented at the Proceedings of IEEE Professional Communication Society International Professional Communication Conference, Cambridge, MA.
    Taenzer, P., Bultz, B.D., Carlson, L.E., Speca, M., DeGagne, T., Olson, K., et al. (2000). Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients. Psychooncology, 9, 203-213.
    Tao, Y., Wang, D., Shortliffe, E.H., & Lussier, Y.A. (2002). Extended attributes of event monitor systems for criteria-based notification modalities. Proceedings of AMIA Symposium, 762-766.
    Trigg, L., Berry, D., Karras, B., Austin-Seymour, M., & Lober, W. (200). Feasibility of patient entered QOL assessment data in a radiation oncology clinic. In H. Marin, E. Marques, E. Hovenga, & W. Goosen (Eds.), eHealth for all: Designing nursing agenda for the future [CD-ROM]. Sau Palo, Brazil: NI 2003.
    Ulman, L. (2001). PHP for the World Wide Web. Berkley, CA: Peachpit Press.
    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.
    Ware, J. (2000). SF-8 health survey. Retrieved July 27, 2004, from
    Wickham, R. (1999). Nausea and vomiting. In C.H. Yarbro, M.H. Frogge, & M. Goodman (Eds.), Cancer symptom management (pp. 228-263). Sudbury, MA: Jones and Bartlett.
    Wilkie, D.J., Judge, M.K., Berry, D.L., Dell, J., Zong, S., & Gillespie, R. (2003). Usability of a computerized PAINReportIt in the general public with pain and people with cancer pain. Journal of Pain and Symptom Management, 25(3), 213-224.
    Wright, E.P., Selby, P.J., Crawford, M., Gillibrand, A., Johnston, C., Perren, T.J., et al. (2003). Feasibility and compliance of automated measurement of quality of life in oncology practice. Journal of Clinical Oncology, 21, 374-382.
    Wujcik, D. (1999). Infection. In M.H. Frogge, C.H. Yarbro, & M. Goodman (Eds.), Cancer symptom management (3rd ed., pp. 307-327). Sudbury, MA: Jones and Bartlett.
    Yarbro, C.H., Frogge, M.H., & Goodman, M. (Eds.). (2003). Cancer symptom management (3rd ed.). Sudbury, MA: Jones and Bartlett.
    Zabora, J.R., Blanchard, C.G., Smith, E.D., Roberts, C.S., Glajchen, M., Sharp, J.W., et al. (1997). Prevalence of psychological distress among cancer patients across the disease continuum. Journal of Psychosocial Oncology, 15(2), 73-87.