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Some literature about Quality of Life (QoL) measurement

The following literature reference is a part of my doctoralthesis. It contains material about the concept of quality of life, aboutquestionnaires available for quality of life measurement, about studiesand 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, DuezNJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JCJM, Kaasa S, KleeM, Osoba D, Razavi D, Rofe PB, Schraub S, Sneeuw K, Sullivan M, TakedaF for the EORTC Study Group on Quality of Life: The European Organizationfor Research and Treatment of Cancer QLQ-C30: A Quality-of-Life Instrumentfor Use in International Clinical Trials in Oncology. Journal of the NationalCancer Institute 1993; 85(5): 365-376
  • Ref. 2 Aaronson NK, Bjordal K, Fayers P, Sullivan M on behalf of theEORTC 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 modularapproach to quality of life assessment in oncology. Int J Mental Hlth (inpress)
  • Ref. 4 Alemi F, Stephens R, Parran T, Llorens S, Bhatt P, Ghadiri A,Eisenstein E: Automated monitoring of outcomes: application to treatmentof drug abuse. Medical Decision Making 1994 Apr-Jun;14(2):180-7
  • Ref. 5 Beinlich I, Bokemeyer C, Räth U, Walter-Kirst R, HartlappJ, Muschiol J, Fraaß U, Schneider HT: Pen-Based Remote Data EntrySystem. Arzneim Forsch / Drug Res 1993, 43(I), Nr. 3:399-404
  • Ref. 6 Bergman B, Aaronson NK: Quality-of-life and cost-effectivenessassessment 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 patientstreated for head and neck cancer: a follow-up study 7 to 11 years afterradiotherapy. International Journal of Radiation Oncology, Biology, Physics1994 Mar 1;28(4):847-56
  • Ref. 8 Bullinger M, Kirchberger I, Porzsolt F: Der EORTC-LebensqualitätsfragebogenQLQ-C30 - Erste psychometrische Ergebnisse einer Querschnittsuntersuchungan 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 receivingend. IV: Validation of quality of life indicators. Annals of Oncology 1991Sep;2(8):597-603
  • Ref. 10 Carr AC, Ancill RJ, Ghosh A, Margo A: Direct assessment ofdepression by microcomputer. A feasibility study. Acta Psychiatrica Scandinavica1981 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, BrowneJ, van Cooten R, Fobes JF: Improving the quality of life during chemotherapyfor advanced breast cancer. A comparison of intermittent and continuoustreatment strategies. N. Engl. J. Med., 317, 1490, 1987
  • Ref. 12 Coates A, Gebski V, Signorini D, Murray P, McNeil D, ByrneM, Forbes JF: Prognostic value of quality-of-life scores during chemotherapyfor advanced breast cancer. J Clin Oncol 1992; 10:1833-1838 und J ClinOncol 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 qualityof life scores in a trial of chemotherapy with or without interferon inpatients with metastatic malignant melanoma. Eur-J-Cancer. 1993; 29A(12):1731-4
  • Ref. 15 Dawes, RM. The robust beauty of improper linear models. AmPsychol 34:571-582, 1979
  • Ref. 16 de Haes JCJM, Van Knippenberg FCE, Neijt JP: Measuring psychologicaland physical distress in cancer patients: structure and application ofthe Rotterdam Symptom Checklist. Br J Cancer 1990; 62:1034-1038
  • Ref. 17 Fidanza F, Gentile MG, Porrini M: A self-administered semiquantitativefood-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 medicalhistory 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-statedescription. Medical Decision Making 1994 Oct-Dec;14(4):336-44
  • Ref. 20 Goldstein-MK; Michelson-D; Clarke-AE; Lenert-LA: A multimediapreference-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 interviewsfor the gynecologic history update. Obstetrics & Gynecology 1995 Apr;85(4):494-8
  • Ref. 22 Haug PJ, Warner HR, Clayton PD, Schmidt CD, Pearl JE, FarneyRJ, Crapo RO, Tocino I, Morrison WJ, Frederick PR: A decision-driven systemto collect the patient history. Computers & Biomedical Research 1987Apr;20(2):193-207
  • Ref. 23 Hjermstad MJ, Fossa SD, Bjordal K, Kaasa S: Test/retest studyof the European Organization for Research and Treatment of Cancer CoreQuality-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 andquality of life of British men with lower urinary tract symptoms: resultsfrom 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 oflife assessment in a randomized phase III trial of small cell lung cancer--alesson from the real world--the Swiss Group for Clinical Cancer ResearchSAKK. Annals of Oncology 1992 Dec;3(10):825-31
  • Ref. 26 Irving RM, Beynon GJ, Viani L, Hardy DG, Baguley DM, MoffatDA: The patient's perspective after vestibular schwannoma removal: qualityof life and implications for management. American Journal of Otology 1995May;16(3):331-7
  • Ref. 27 Kaasa S, Mastekaasa A, Lund E: Prognostic factors for patientswith inoperable non-small cell lung cancer, limited disease. RadiotherOncol 1989;15:235-242
  • Ref. 28 Levine S, Ancill RJ, Roberts AP: Assessment of suicide riskby 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 onquality 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-FormHealth Survey (SF-36): II. Psychometric and clinical tests of validityin 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-itemShort-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-acquiredsexual 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 antipsychoticdrugs and patients' quality of life: patient education and preference assessmentwith 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 selectingquality-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 qualityof 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 oflife. In: Osoba, David (Hrsg): Effect of cancer on quality of life. BocaRaton, 1991, CRC Press, 25-40
  • Ref. 37 Patel UH, Babbs CF: A computer-based, automated, telephonicsystem to monitor patient progress in the home setting. Journal of MedicalSystems 1992 Jun;16(2-3):101-12
  • Ref. 38 Perneger TV, Leplege A, Etter JF, Rougemont A: Validation ofa 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 threeinstruments (QLQ-C30, SF-36, QWB-7) measuring health-related quality oflife/quality of well-being. Psycho-Oncology, Vol. 5, 1996, im Druck.
  • Ref. 41 Porzsolt F, Mayer-Steinacker R, Eggl Ch for the breast cancerstudy group, CCUU: Effectiveness and utility of a second line treatmentin metastatic breast cancer. Onkologie 1995; Im Druck
  • Ref. 42 Porzsolt F, Messung von Lebensqualität - Wie und wozuSie das Wohlbefinden Ihrer Patienten quantifizieren sollten, Der Allgemeinarzt18. Jg., 6/1996:610-624
  • Ref. 43 Porzsolt F, Wölpl CP, Sigle JM, Rist CE: Lebensqualitätunter moderner Pharmakotherapie, Excerpta Oncologica Ciba, 4,1996:75-87
  • Ref. 44 Presant CA: Quality of life in cancer patients. Who measureswhat? Am J Clin Oncol 1984; 7:571-573
  • Ref. 45 Sacchini V, Luini A, Tana S, Lozza L, Galimberti V, MersonM, Agresti R, Veronesi P, Greco M: Quantitative and qualitative cosmeticevaluation after conservative treatment for breast cancer. European Journalof 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. Journalof the National Cancer Institute 1992 Jul 1;84(13):1023-6
  • Ref. 47 Schipper H, Clinch J, McMurray A, Levitt M: Measuring the qualityof life of cancer patients: The Functional Living Index-Cancer: developmentand validation. J Clin Oncol 1984; 2:472-483
  • Ref. 48 Sigle, JM: SC-JMS GraTaGen and SC-JMSGraTaSim software manuals, Dr. med. Jörg M. Sigle, Kunstvolle EDV & Elektronik1990 - 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 & Elektronik1993 - 1995
  • Ref. 50 Sigle, JM, Porzsolt,F: Practical aspects of quality-of-life measurement: design and feasibilitystudy of the quality-of-life recorder and the standardized measurementof 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 ClinicalResearch Ed. 1985 Jan 19;290(6463):212-4
  • Ref. 52 Spitzer WO, Dobson AJ, Hall J, Chesterman E, Levi J, ShepherdR, 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 & AaronsonNK. The EORTC approach to quality of life assessment: Guidelines for developingquestionnaire modules. Quality of Life Research 2:287-295, 1993
  • Ref. 54 Stanton B, Li X, Black MM, Ricardo I, Galbraith J: Anal intercourseamong 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, GalbraithJ: Early initiation of sex and its lack of association with risk behaviorsamong adolescent African-Americans. Pediatrics 1993 Jul;92(1):13-9
  • Ref. 56 Stjernswärd J and Teoh N: Perspectives on Quality of Lifeand the Global Cancer Problem. In Osoba D (Hrsg): Effect of cancer on qualityof life. CRC Press, Boca Raton, 1991, 1-5
  • Ref. 57 Sugarbaker PH, Barofsky I, Rosenberg SA and Gianola FJ: Qualityfo 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 HealthSurvey--I. Evaluation of data quality, scaling assumptions, reliabilityand 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-lifemeasures. 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, PeterssonBG: Interactive computer program for self-distributed medical questionnairein a population health screening. Computer Programs in Biomedicine 1982Jun;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 conventionalquestionnaires]. [Japanese], Nippon Koshu Eisei Zasshi - Japanese Journalof 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 generalhealth 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 divergentevaluations by physicians and patients of patient´s complaints. PublicHealth Rep 1983; 98(2):141-145

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