Some literature about Quality of Life (QoL) measurement

The following literature reference is part of my doctoral thesis. It contains material about the concept of quality of life, about questionnaires available for quality of life measurement, about studies and special results, and about the use of the Quality-of-Life-Recorder (Ref. 48 - 50, hyperlinks are in the list).

Additional literature is listed in the respective section of my CV and in the multimedia documents page.

• Ref. 1 Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JCJM, Kaasa S, Klee M, Osoba D, Razavi D, Rofe PB, Schraub S, Sneeuw K, Sullivan M, Takeda F for the EORTC Study Group on Quality of Life: The European Organization for Research and Treatment of Cancer QLQ-C30: A Quality-of-Life Instrument for Use in International Clinical Trials in Oncology. Journal of the National Cancer Institute 1993; 85(5): 365-376
• Ref. 2 Aaronson NK, Bjordal K, Fayers P, Sullivan M on behalf of the EORTC Study Group on Quality of Life: EORTC QLQ-C30 Scoring Manual - Draft, 23. April 1995
• Ref. 3 Aaronson NK, Cull A, Kaasa S, Sprangers MAG. The EORTC modular approach to quality of life assessment in oncology. Int J Mental Hlth (in press)
• Ref. 4 Alemi F, Stephens R, Parran T, Llorens S, Bhatt P, Ghadiri A, Eisenstein E: Automated monitoring of outcomes: application to treatment of drug abuse. Medical Decision Making 1994 Apr-Jun;14(2): 180-7
• Ref. 5 Beinlich I, Bokemeyer C, Räth U, Walter-Kirst R, Hartlapp J, Muschiol J, Fraaß U, Schneider HT: Pen-Based Remote Data Entry System. Arzneim Forsch / Drug Res 1993, 43(I), Nr. 3: 399-404
• Ref. 6 Bergman B, Aaronson NK: Quality-of-life and cost-effectiveness assessment in lung cancer. [Review], Current Opinion in Oncology 1995 Mar;7(2): 138-43
• Ref. 7 Bjordal K, Kaasa S, Mastekaasa A: Quality of life in patients treated for head and neck cancer: a follow-up study 7 to 11 years after radiotherapy. International Journal of Radiation Oncology, Biology, Physics 1994 Mar 1;28(4): 847-56
• Ref. 8 Bullinger M, Kirchberger I, Porzsolt F: Der EORTC-Lebensqualitätsfragebogen QLQ-C30 - Erste psychometrische Ergebnisse einer Querschnittsuntersuchung an älteren Personen. Z Gerontophysiologie und -psychiatrie 1993; 6(4): 259-265
• Ref. 9 Butow P, Coates A, Dunn S, Bernhard J, Hurny C: On the receiving end. IV: Validation of quality of life indicators. Annals of Oncology 1991 Sep;2(8): 597-603
• Ref. 10 Carr AC, Ancill RJ, Ghosh A, Margo A: Direct assessment of depression by microcomputer. A feasibility study. Acta Psychiatrica Scandinavica 1981 Nov;64(5): 415-22
• Ref. 11 Coates A, Gebski V, Bishop JF, Jeal PN, Woods RL, Snyder R, Tattersall MHN, Byrne M, Harvey V, Grantley G, Simpson J, Drummond R, Browne J, van Cooten R, Fobes JF: Improving the quality of life during chemotherapy for advanced breast cancer. A comparison of intermittent and continuous treatment strategies. N. Engl. J. Med., 317, 1490, 1987
• Ref. 12 Coates A, Gebski V, Signorini D, Murray P, McNeil D, Byrne M, Forbes JF: Prognostic value of quality-of-life scores during chemotherapy for advanced breast cancer. J Clin Oncol 1992; 10: 1833-1838 und J Clin Oncol 1993; Vol 11 No 10: 2050 [Brief]
• Ref. 13 Coates-A; Glasziou-P; McNeil-D: On the receiving end--III. Measurement of quality of life during cancer chemotherapy. Ann-Oncol. 1990; 1(3): 213-7
• Ref. 14 Coates-A; Thomson-D; McLeod-GR; Hersey-P; Gill-PG; Olver-IN; Kefford-R; Lowenthal-RM; Beadle-G; Walpole-E: Prognostic value of quality of life scores in a trial of chemotherapy with or without interferon in patients with metastatic malignant melanoma. Eur-J-Cancer. 1993; 29A(12): 1731-4
• Ref. 15 Dawes, RM. The robust beauty of improper linear models. Am Psychol 34: 571-582, 1979
• Ref. 16 de Haes JCJM, Van Knippenberg FCE, Neijt JP: Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist. Br J Cancer 1990; 62: 1034-1038
• Ref. 17 Fidanza F, Gentile MG, Porrini M: A self-administered semiquantitative food-frequency questionnaire with optical reading and its concurrent validation. European Journal of Epidemiology 1995 Apr;11(2): 163-70
• Ref. 18 Friedman RB, Huhta J, Cheung S: An automated verbal medical history system. Archives of Internal Medicine 1978 Sep;138(9): 1359-61
• Ref. 19 Goldstein MK, Clarke AE, Michelson D, Garber AM, Bergen MR, Lenert LA: Developing and testing a multimedia presentation of a health-state description. Medical Decision Making 1994 Oct-Dec;14(4): 336-44
• Ref. 20 Goldstein-MK; Michelson-D; Clarke-AE; Lenert-LA: A multimedia preference-assessment tool for functional outcomes. Proc-Annu-Symp-Comput-Appl-Med-Care. 1993: 844-8
• Ref. 21 Hasley S: A comparison of computer-based and personal interviews for the gynecologic history update. Obstetrics & Gynecology 1995 Apr;85(4): 494-8
• Ref. 22 Haug PJ, Warner HR, Clayton PD, Schmidt CD, Pearl JE, Farney RJ, Crapo RO, Tocino I, Morrison WJ, Frederick PR: A decision-driven system to collect the patient history. Computers & Biomedical Research 1987 Apr;20(2): 193-207
• Ref. 23 Hjermstad MJ, Fossa SD, Bjordal K, Kaasa S: Test/retest study of the European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire. Journal of Clinical Oncology 1995 May;13(5): 1249-54
• Ref. 24 Hunter DJ, McKee M, Black NA, Sanderson CF: Health status and quality of life of British men with lower urinary tract symptoms: results from the SF-36. Urology 1995 Jun;45(6): 962-71
• Ref. 25 Hurny C, Bernhard J, Joss R, Willems Y, Cavalli F, Kiser J, Brunner K, Favre S, Alberto P, Glaus A, et al: Feasibility of quality of life assessment in a randomized phase III trial of small cell lung cancer -- a lesson from the real world -- The Swiss Group for Clinical Cancer Research SAKK. Annals of Oncology 1992 Dec;3(10): 825-31
• Ref. 26 Irving RM, Beynon GJ, Viani L, Hardy DG, Baguley DM, Moffat DA: The patient's perspective after vestibular schwannoma removal: quality of life and implications for management. American Journal of Otology 1995 May;16(3): 331-7
• Ref. 27 Kaasa S, Mastekaasa A, Lund E: Prognostic factors for patients with inoperable non-small cell lung cancer, limited disease. Radiother Oncol 1989;15: 235-242
• Ref. 28 Levine S, Ancill RJ, Roberts AP: Assessment of suicide risk by computer-delivered self-rating questionnaire: preliminary findings. Acta Psychiatrica Scandinavica 1989 Sep;80(3): 216-20
• Ref. 29 McCorvey-E Jr; Wright-JT Jr; Culbert-JP; McKenney-JM; Proctor-JD; Annett-MP: Effect of hydrochlorothiazide, enalapril, and propranolol on quality of life and cognitive and motor function in hypertensive patients.Clin-Pharm. 1993 Apr; 12(4): 300-5
• Ref. 30 McHorney CA, Ware JE and Raczek AE. The MOS 36-item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993; 31: 247-263
• Ref. 31 McHorney CA, Ware JE, Lu JFR and Sherbourne CD. The MOS 36-item Short-Form Health Survey (SF-36): III. Test of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care 1994; 32: 40-66
• Ref. 32 Millstein SG, Irwin CE Jr: Acceptability of computer-acquired sexual histories in adolescent girls. Journal of Pediatrics 1983 Nov;103(5): 815-9
• Ref. 33 Morss-SE; Lenert-LA; Faustman-WO: The side effects of antipsychotic drugs and patients' quality of life: patient education and preference assessment with computers and multimedia. Proc-Annu-Symp-Comput-Appl-Med-Care. 1993: 17-21
• Ref. 34 Osoba D, Aaronson NK, Till JE: A practical guide for selecting quality-of-life measures in clinical trials and practice. In Osoba D (Hrsg): Effect of cancer on quality of life. CRC Press, Boca Raton, 1991, 89-104
• Ref. 35 Osoba D: Lessons learned from measuring health-related quality of life in oncology. [Review], Journal of Clinical Oncology 1994 Mar;12(3): 608-16
• Ref. 36 Osoba, David: Measuring the effect of cancer on quality of life. In: Osoba, David (Hrsg): Effect of cancer on quality of life. Boca Raton, 1991, CRC Press, 25-40
• Ref. 37 Patel UH, Babbs CF: A computer-based, automated, telephonic system to monitor patient progress in the home setting. Journal of Medical Systems 1992 Jun;16(2-3): 101-12
• Ref. 38 Perneger TV, Leplege A, Etter JF, Rougemont A: Validation of a French-language version of the MOS 36-Item Short Form Health Survey (SF-36) in young healthy adults. Journal of Clinical Epidemiology 1995 Aug;48(8): 1051-60
• Ref. 39 Porzsolt F, Gaus W: Wirksamkeit und Nutzen medizinischer Maßnahmen. Ein Beitrag zur Optimierung des Gesundheitssystems. Klinikarzt 1993; 22: 525-528
• Ref. 40 Porzsolt F, Kosa R, Büchele G, Gaus W: Comparison of three instruments (QLQ-C30, SF-36, QWB-7) measuring health-related quality of life/quality of well-being. Psycho-Oncology, Vol. 5, 1996, im Druck.
• Ref. 41 Porzsolt F, Mayer-Steinacker R, Eggl Ch for the breast cancer study group, CCUU: Effectiveness and utility of a second line treatment in metastatic breast cancer. Onkologie 1995; Im Druck
• Ref. 42 Porzsolt F, Messung von Lebensqualität - Wie und wozu Sie das Wohlbefinden Ihrer Patienten quantifizieren sollten, Der Allgemeinarzt 18. Jg., 6/1996: 610-624
• Ref. 43 Porzsolt F, Wölpl CP, Sigle JM, Rist CE: Lebensqualität unter moderner Pharmakotherapie, Excerpta Oncologica Ciba, 4,1996: 75-87
• Ref. 44 Presant CA: Quality of life in cancer patients. Who measures what? Am J Clin Oncol 1984; 7: 571-573
• Ref. 45 Sacchini V, Luini A, Tana S, Lozza L, Galimberti V, Merson M, Agresti R, Veronesi P, Greco M: Quantitative and qualitative cosmetic evaluation after conservative treatment for breast cancer. European Journal of Cancer 1991;27(11): 1395-400
• Ref. 46 Sadura A, Pater J, Osoba D, Levine M, Palmer M, Bennett K: Quality-of-life assessment: patient compliance with questionnaire. Journal of the National Cancer Institute 1992 Jul 1;84(13): 1023-6
• Ref. 47 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 1984; 2: 472-483
• Ref. 48 Sigle, JM: SC-JMS GraTaGen and SC-JMS GraTaSim software manuals, Dr. med. Jörg M. Sigle, Kunstvolle EDV & Elektronik 1990-1995
• Ref. 49 Sigle, JM: SC-JMS GraTaSim / Lebensqualität - Ein angenehmes System zur computergestützten Erfassung der Lebensqualität, QL-Recorder software manual, Dr. med. Jörg M. Sigle, Kunstvolle EDV & Elektronik 1993-1995
• Ref. 50 Sigle, JM, Porzsolt, F: Practical aspects of quality-of-life measurement: Design and feasibility study of the quality-of-life recorder and the standardized measurement of quality of life in an out-patient clinic, Cancer Treatment Reviews (1996) 22 (Supplement A), 75-89
• Ref. 51 Skinner HA, Allen BA, McIntosh MC, Palmer WH: Lifestyle assessment: applying microcomputers in family practice. British Medical Journal Clinical Research Ed. 1985 Jan 19;290(6463): 212-4
• Ref. 52 Spitzer WO, Dobson AJ, Hall J, Chesterman E, Levi J, Shepherd R, Battista RN, Catchlove BR: Measuring the quality of life of cancer patients: a concise QL-index for use by physicians. J Chron Dis 1981; 34: 585-597
• Ref. 53 Sprangers MAG, Cull A, Bjordal K, Groenvold M & Aaronson NK. The EORTC approach to quality of life assessment: Guidelines for developing questionnaire modules. Quality of Life Research 2: 287-295, 1993
• Ref. 54 Stanton B, Li X, Black MM, Ricardo I, Galbraith J: Anal intercourse among preadolescent and early adolescent low-income urban African-Americans. Archives of Pediatrics & Adolescent Medicine 1994 Nov;148(11): 1201-4
• Ref. 55 Stanton B, Romer D, Ricardo I, Black M, Feigelman S, Galbraith J: Early initiation of sex and its lack of association with risk behaviors among adolescent African-Americans. Pediatrics 1993 Jul;92(1): 13-9
• Ref. 56 Stjernswärd J and Teoh N: Perspectives on Quality of Life and the Global Cancer Problem. In Osoba D (Hrsg): Effect of cancer on quality of life. CRC Press, Boca Raton, 1991, 1-5
• Ref. 57 Sugarbaker PH, Barofsky I, Rosenberg SA and Gianola FJ: Quality of life assessment of patients in extremity sarcoma trials. Surgery, 91, 17, 1982
• Ref. 58 Sullivan M, Karlsson J, Ware JE Jr: The Swedish SF-36 Health Survey -- I. Evaluation of data quality, scaling assumptions, reliability and construct validity across general populations in Sweden. Social Science & Medicine 1995 Nov;41(10): 1349-58
• Ref. 59 Till, JE: Uses (and some possible abuses) of quality-of-life measures. In Osoba D (Hrsg): Effect of cancer on quality of life. CRC Press,Boca Raton, 1991, 137-154
• Ref. 60 Trell E, Dahlberg N, Larsson C, Krantz JO, Lazer A, Petersson BG: Interactive computer program for self-distributed medical questionnaire in a population health screening. Computer Programs in Biomedicine 1982 Jun;14(3): 257-66
• Ref. 61 Tsubono Y, Fukao A, Hisamichi S: [Response rate, missing values, validity and reproducibility of responses in mark-sheet and conventional questionnaires]. [Japanese], Nippon Koshu Eisei Zasshi - Japanese Journal of Public Health 1994 Jun;41(6): 549-57
• Ref. 62 Tukey, JW: Exploratory Data Analysis. Addison-Wesley 1977, 27-56
• Ref. 63 Ware JE, Sherbourne CD: The MOS 36-item Short-Form Health Survey (SF-36). I. Conceptual framework and item selection. Med Care 1992; 30: 473-83
• Ref. 64 Ware JE: Measuring functioning, well-being, and other general health concepts. In Osoba D (Hrsg): Effect of cancer on quality of life. CRC Press, Boca Raton, 1991, 7-23
• Ref. 65 Wartman SA, Morlock LL, Malitz FE, Palm E: Impact of divergent evaluations by physicians and patients of patient´s complaints. Public Health Rep 1983; 98(2): 141-145