16
Views
1
CrossRef citations to date
0
Altmetric
Review

Improvements in measuring the health-related quality of life of cancer patients

, &
Pages 97-105 | Published online: 09 Jan 2014

References

  • Fayers PM, Hopwood P, Harvey A, Girling DJ, Machin D, Stephens R. Quality of life assessment in clinical trials guidelines and a checklist for protocol writers: The UK Medical Research Council experience. Eur. J. Cancer 33, 20–28 (1997).
  • Osoba D. What has been learned from measuring health-related quality of life in clinical oncology. Eur. J. Cancer 35, 1565–1570 (1999).
  • Staquet M, Berzon R, Osoba D, Machin D. Guidelines for reporting results of quality of life assessments in clinical trials. Qual. Life Res. 5, 496–502 (1996).
  • Cull A, Gould A, Chappell J et al. Validating automated screening for psychological distress by means of computer touchscreens for use in routine oncology practice. Br. J. Cancer 85, 1842–1849 (2001).
  • Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA 288, 3027–3034 (2002).
  • Ganz PA. Long-range effect of clinical trial interventions on quality of life. Cancer 74, 2620–2624 (1994).
  • Velikova G, Wright EP, Smith AB et al. Automated collection and recording of quality of life data: A comparison of paper and computer touchscreen questionnaires. J. Clin. Oncol. 17, 998–1007 (1999).
  • World Health Organisation. Constitution of the World Health Organisation. WHO, Geneva, Switzerland (1946).
  • Calman KC. Quality of life in cancer patients – an hypothesis. J. Med. Ethics 10, 124–127 (1984).
  • De Haes JC. Quality of life: conceptual and theoretical considerations. In: Psychosocial Oncology. Watson M, Greer S, Thomas C (Eds). Pergamon Press, Oxford, UK 61–70 (1988).
  • Cella DF, Cherrin EA. Quality of life during and after cancer treatment. Compr. Ther. 14, 69–75 (1988).
  • Velikova G, Stark D, Selby PJ. Quality of life instruments in oncology. Eur. J. Cancer 35, 1571–1580 (1999).
  • Aaronson NK, Ahmedzai S, Bergman B et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality of life instrument for use in international clinical trials in oncology. J. Natl. Cancer Inst. 85, 365–376 (1993).
  • Cella DF. Quality of life: concepts and definition. J. Pain Symptom Manage. 9, 186–192 (1994).
  • Cella DF, Tulsky DS, Gray G et al. The functional assessment of cancer therapy scale: development and validation of the general measure. J. Clin. Oncol. 11, 570–579 (1993).
  • Karnofsky DA, Burchenal JH. The clinical evaluation of chemotherapeutic agents in cancer. In: Evaluation of Chemotherapeutic Agents. MacLeod CM (Ed.). Columbia Univ. Press, USA (1949).
  • Priestman TJ, Baum M. Evaluation of quality of life in patients receiving treatment for advanced breast cancer. Lancet 24, 899–900 (1976).
  • Wright EP, Kiely M, Johnston C, Smith AB, Cull A, Selby PJ. Cancer patients with social problems. Qual. Life Res. 14, 373–386 (2005).
  • Wright EP, Smith AB, Kiely M et al. Psychosocial difficulties, deprivation and cancer: 3 questionnaire studies involving 609 cancer patients. Br. J. Cancer 93, 622–626 (2005).
  • Browne JP, O’Boyle CA, McGee HM, McDonald NJ, Joyce CRB. Development of a direct weighting procedure for quality of life domains. Qual. Life Res. 6, 301–309 (1997).
  • Hickey AM, Bury G, O’Boyle CA, Bradley F, O’Kelly FD, Shannon W. A new short form individual quality of life measure (SEIQOL-DW): Application in a cohort of individuals with HIV/AIDS. Br. Med. J. 313, 29–33 (1996).
  • Carlson LE, Bultz BD, Morris DG. Individualized quality of life, standardized quality of life, and distress in patients undergoing a Phase I trial of the novel therapeutic Reolysin (reovirus). Health. Qual. Life Outcomes 3, 7 (2005).
  • O’Boyle CA, McGee H, Hickey A, O’Malley K, Joyce CRB. Individual quality of life in patients undergoing hip replacement. Lancet339, 1088–1091 (1992).
  • Macduff C, Russell E. The problem of measuring change in individual health-related quality of life by postal questionnaire: use of the patient-generated index in a disabled population. Qual. Life Res. 7, 761–769 (1998).
  • Montgomery C, Pocock M, Titley K, Lloyd K. Predicting psychological distress in patients with leukaemia and lymphoma. J. Psychosom. Res. 54, 289–292 (2003).
  • Waldron D, O’Boyle CA, Kearney M, Moriarty M, Carney D. Quality-of-life measurement in advanced cancer: assessing the individual. J. Clin. Oncol. 17, 3603–3611 (1999).
  • Lindblad AK, Ring L, Glimelius B, Hansson MG. Focus on the individual – quality of life assessments in oncology. Acta Oncol. 41, 507–516 (2002).
  • Schipper H, Clinch J, McMurray A, Levitt M. Measuring the quality of life of cancer patients: the Functional Living Index – Cancer: development and validation. J. Clin. Oncol.2, 472–483 (1984).
  • Coates A, Dillenbeck CF, McNeil DR et al. On the receiving end - II. Linear analogue self-assessment (LASA) in evaluation of aspects of the quality of life of cancer patients receiving therapy. Eur. J. Cancer Clin. Oncol. 19, 1633–1637 (1983).
  • Selby PJ, Chapman JA, Etazadi-Amoli J, Dalley D, Boyd NF. The development of a method for assessing the quality of life of cancer patients. Br. J. Cancer 50, 13–22 (1984).
  • De Haes JC, van Knippenberg FC, Neijt JP. Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist. Br. J. Cancer 62, 1034–1038 (1990).
  • Spitzer WO, Dobson AJ, Hall J et al. Measuring the quality of life of cancer patients: a concise QL-index for use by physicians. J. Chronic Dis. 34, 585–597 (1981).
  • Cella D. Manual of the Functional Assessment of Chronic Illness Therapy (FACIT) scales. Chicago, Evanston Northwestern Healthcare (1997).
  • Ward WL, Hahn EA, Mo F, Hernandez L, Tulsky DS, Cella D. Reliability and validity of the Functional Assessment of Cancer Therapy-Colorectal (FACT-C) quality of life instrument. Qual. Life Res. 8, 181–195 (1999).
  • Brady MJ, Cella DF, Mo F et al. Reliability and validity of the Functional Assessment of Cancer Therapy – Breast quality-of-life instrument. J. Clin. Oncol. 15, 974–986 (1997).
  • Cella DF, Bonomi AE, Lloyd SR, Tulsky DS, Kaplan E, Bonomi P. Reliability and validity of the Functional Assessment of Cancer Therapy – Lung (FACT-L) quality of life instrument. Lung Cancer 2, 199–220 (1995).
  • Osoba D, Aaronson N, Zee B, Sprangers M, te Velde A. Modification of the EORTC QLQ-C30 (version 2.0) based on content validity and reliability testing in large samples of patients with cancer. Qual. Life Res. 6, 103–108 (1997).
  • Sharp LK, Knight SJ, Nadler R et al. Quality of life in low-income patients with metastatic prostate cancer: divergent and convergent validity of three instruments. Qual. Life Res. 8, 461–470 (1999).
  • Sigurdardottir V, Bolund C, Brandberg Y, Sullivan M. The impact of generalized malignant melanoma on quality of life evaluated by the EORTC questionnaire technique. Qual. Life Res. 2, 193–203 (1993).
  • Bergman B, Aaronson NK, Ahmedzai S, Kaasa S, Sullivan M. The EORTC QLQ-LC13: a modular supplement to the EORTC Core Quality of Life Questionnaire (QLQ-C30) for use in lung cancer clinical trials. EORTC Study Group on Quality of Life. Eur. J. Cancer 30, 635–642 (1994).
  • Kaasa S, Bjordal K, Aaronson N et al. The EORTC core quality of life questionnaire (QLQ-C30): validity and reliability when analysed with patients treated with palliative radiotherapy. Eur. J. Cancer 31, 2260–2263 (1995).
  • Winstead-Fry P, Schultz A. Psychometric analysis of the Functional Assessment of Cancer Therapy-General (FACT-G) scale in a rural sample. Cancer79, 2446–2452 (1997).
  • Taenzer PA, Speca M, Atkinson MJ et al. Computerized quality-of-life screening in an oncology clinic. Cancer Practice 5, 168–175 (1997).
  • Buxton J, White M, Osoba D. Patients’ experiences using a computerized program with a touch-sensitive video monitor for the assessment of health-related quality of life. Qual. Life Res. 7, 513–519 (1998).
  • Newell S, Girgis A, Sanson-Fisher RW et al. Are touchscreen computer surveys acceptable to medical oncology patients? J. Psychosocial Oncol. 15, 37–46 (1997).
  • Allenby A, Matthews J, Beresford J, McLachlan SA. The application of computer touch-screen technology in screening for psychosocial distress in an ambulatory oncology setting. Eur. J Cancer Care 11, 245–253 (2002).
  • Carlson LE, Speca M, Hagen N, Taenzer P. Computerized quality-of-life screening in a cancer pain clinic. J. Pall. Care 17, 46–52 (2001).
  • Smith AB, Velikova G, Selby P. Computer-assisted questionnaires may facilitate quality-of-life Assessment: at a cost. Compr. Human Behav. (2006) (In Press).
  • Hahn EA, Cella D, Dobrez D et al. The talking touchscreen: A new approach to outcomes assessment in low literacy. Psycho. Oncol. 13, 86–95 (2004).
  • Cull A, Gould A, Chappell J et al. Validating automated screening for psychological distress by means of computer touchscreens for use in routine oncology practice. Br. J. Cancer 85, 1842–1849 (2001).
  • Wright EP, Selby P, Gillibrand A et al. Feasibility and compliance of automated measurement of quality of life in oncology practice. J. Clin. Oncol. 21, 374–382 (2003).
  • Rasch G. Probabilistic models for some intelligence and attainment tests. University of Chicago Press, London, UK (1960).
  • Bond TG, Fox CM. Applying the Rasch model: fundamental measurement in the human sciences. Lawrence Erlbaum Associates: NJ, USA (2001).
  • Hambleton RK, Swaminathan H, Rogers HJ. Fundamentals of item response theory. Sage, CA, USA (1991).
  • Bjorner JB, Petersen MA, Groenvold M et al. Use of item response theory to develop a shortened version of the EORTC QLQ-C30 emotional functioning scale. Qual. Life Res. 13, 1683–1697 (2004).
  • Groenvold M, Petersen MA, Aaronson NK et al. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur. J. Cancer42(1), 55–64 (2006).
  • Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psych. Scand. 67, 361–370 (1983).
  • Smith AB, Wright EP, Rush R, Stark D, Velikova G, Selby PJ. Rasch analysis of the hospital anxiety &depression Scale. Psycho. Oncol. (2006) (In Press).
  • McHorney CA. Generic health measurement: past accomplishments and a measurement paradigm for the 21st century. Ann. Int. Med. 127, 743–750 (1997).
  • Wainer H. Computerized adaptive testing: a primer. Lawrence Erlbaum Associates. Hillsdale, NJ, USA (1990).
  • Waller NG, Reise SP. Computerized adaptive personality assessment: an illustration with the absorption scale. J. Pers. Soc. Psychol. 57, 1051–1058 (1989).
  • Revicki DA, Cella DF. Health status assessment for the twenty-first century: item response theory, item banking and computer adaptive testing. Qual. Life Res. 6, 595–600 (1997).
  • Ware JE Jr, Kosinski M, Bjorner JB et al. Applications of computerized adaptive testing (CAT) to the assessment of headache impact. Qual. Life Res. 12, 935–52 (2003).
  • Lai J-S, Cella D, Chang C-H, Bode RK, Heinemann AW. Item banking to improve, shorten and computerize self-reported fatigue: an illustration of steps to create a core item bank from the FACIT-Fatigue Scale. Qual. Life Res. 12, 485–501 (2003).
  • Lai JS, Dineen K, Reeve BB et al. An item response theory-based pain item bank can enhance measurement precision. J. Pain Symptom Manage.30, 278–288 (2005).
  • Eton DT, Lai JS, Cella D. Data pooling and analysis to build a preliminary item bank: an example using bowel function in prostate cancer. Eval. Health. Prof. 28, 142–159 (2005).
  • Jaeschke R, Singer J, Guyatt GH. Measurement of health status: ascertaining the minimal clinically important difference. Controlled Clin. Trials 10, 407–415 (1989).
  • Wyrwich KW, Wolinsky FD. Identifying meaningful intra-individual change standards for health-related quality of life measures. J. Eval. Clin. Pract.6, 39–49 (2000).
  • Osoba D, Rodrigues G, Myles J et al. Interpreting the significance of changes in health-related quality-of-life scores. J. Clin. Oncol.16, 139–144 (1998).
  • King MT. The interpretation of scores from the EORTC quality of life questionnaire QLQ-C30. Qual. Life Res. 5, 555–567 (1996).
  • Sloan JA, Cella D, Hays RD. Clinical significance of patient-reported questionnaire data: another step toward consensus. J. Clin. Epidem.58, 1217–1219 (2005).
  • Cella D, Hahn EA, Dineen K. Meaningful change in cancer-specific quality of life scores: differences between improvement and worsening. Qual. Life Res. 11, 207–221 (2002).
  • Ringash J, Bezjak A, O’Sullivan B, Redelmeier DQ. Interpreting differences in quality of life: the FACT-H&N in laryngeal cancer patients. Qual. Life Res. 13, 725–733 (2004).
  • Schwartz CE, Sprangers MAG. Adaptation to changing health. American Psychological Association, WA, USA (2000).
  • Detmar SB, Aaronson NK, Wever LD, Muller M, Schornagel JH. How are you feeling? Who wants to know? Patients’ and oncologists’ preferences for discussing health-related quality-of-life issues. J. Clin. Oncol. 18, 3295–3301 (2000).
  • Detmar SB, Muller MJ, Wever LD, Schornagel JH, Aaronson NK. The patient–physician relationship. Patient–physician communication during out-patient palliative treatment visits: an observational study. JAMA 285, 1351–1357 (2001).
  • Detmar SB, Aaronson NK. Quality of life assessment in daily clinical oncology practice: a feasibility study. Eur. J. Cancer 34, 1181–1186 (1998).
  • Velikova G, Brown JM, Smith AB, Selby PJ. Computer-based quality of life questionnaires may contribute to doctor–patient interactions in oncology. Br. J. Cancer 86, 51–59 (2002).
  • Velikova G, Booth L, Smith AB et al. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J. Clin. Oncol. 22, 714–724 (2004).
  • Taenzer P, Bultz BD, Carlson LE et al. Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer out-patients. Psychooncology 9, 203–213 (2000).

Websites

  • EORTC Quality of Life Group www.eortc.be/home/qol
  • NIH Roadmap: accelerating medical discovery to improve health. http://nihroadmap.nih.gov/clinicalresearch/promis.asp

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.