Quality of life assessment in women with breast cancer: benefits, acceptability and utilization

National Center for Health Statistics CDCP: US Mortality Public Use Data Tapes, 1969–2003. 2006.

American Cancer Society: Cancer Statistics 2006: A Presenation from the American Cancer Society. 2006.

Tracy GE: Breast cancer--the disease many women fear the most. S D J Med 2004,57(4):148.

Ries LAG Harkins, D, Krapcho, M, et al.: SEER Cancer Statistics Review, 1975–2003. 2006.

Pfizer Oncology: Breast Cancer Fact Sheet. 2006.

Lipscomb J, Donaldson MS, Hiatt RA: Cancer Outcomes Research and the Arenas of Application. J Natl Cancer Inst Monographs 2004,2004(33):1–7. 10.1093/jncimonographs/lgh038

Brown ML, Lipscomb J, Snyder C: The burden of illness of cancer: economic cost and quality of life. Annu Rev Public Health 2001, 22: 91–113. 10.1146/annurev.publhealth.22.1.91

American Cancer Society ISDH Indiana Cancer Consortium: Indiana Cancer Facts and Figures 2006: A sourcebook for planning and implementing programs for cancer prevention and control. 2006.

Hewitt M Herdman, R., and Holland, J., Editors, National Research Council: Meeting Psychosocial Needs of Women with Breast Cancer. 2004, 229–233.

Seidman AD, Portenoy R, Yao TJ, Lepore J, Mont EK, Kortmansky J, Onetto N, Ren L, Grechko J, Beltangady M, et al.: Quality of life in phase II trials: a study of methodology and predictive value in patients with advanced breast cancer treated with paclitaxel plus granulocyte colony-stimulating factor. J Natl Cancer Inst 1995,87(17):1316–1322. 10.1093/jnci/87.17.1316

Wen KY, Gustafson DH: Needs assessment for cancer patients and their families. Health Qual Life Outcomes 2004, 2: 11. 10.1186/1477-7525-2-11

Sharpe L, Butow P, Smith C, McConnell D, Clarke S: Changes in quality of life in patients with advanced cancer: Evidence of response shift and response restriction. Journal of Psychosomatic Research 2005, 58: 497–504. 10.1016/j.jpsychores.2005.02.017

Ganz PA: Quality of life measures in cancer chemotherapy: Methodology and implications. Pharmacoeconomics 1994, 5: 376–388.

Strain JJ: The evolution of quality of life evaluations in cancer therapy. Oncology 1990, 4: 22–26.

Karnofsky DA, Abelmann WH, Craver LF, Burchenal JH: The use of the nitrogen mustards in the palliative treatment of carcinoma. Cancer 1948, 634–656. Publisher Full Text 10.1002/1097-0142(194811)1:4<634::AID-CNCR2820010410>3.0.CO;2-L

Velikova G, Wright EP, Smith AB, Cull A, Gould A, Forman D, Perren T, Stead M, Brown J, Selby PJ: Automated collection of quality-of-life data: A comparison of paper and computer touch-screen questionnaires. Journal of Clinical Oncology 1999,17(3):998–1007.

Ganz PA, Goodwin PJ: Quality of Life in Breast Cancer: What Have We Learned and Where Do We Go from Here? In Outcomes Assessment in Cancer: Measures, Methods, and Applications. Edited by: Lipscomb J, Gotay CC, Snyder C. Cambridge, United Kingdom , Cambridge University Press; 2005:93–125.

Donaldson MS: Taking stock of health-related quality-of-life measurement in oncology practice in the United States. Journal of the National Cancer Institute Monographs 2004, 155–167. 10.1093/jncimonographs/lgh017

Goodwin PJ, Black JT, Bordeleau LJ, Ganz PA: Health-related quality-of-life measurement in randomized clinical trials in breast cancer - Taking stock. Journal of the National Cancer Institute 2003,95(4):263–281.

Mandelblatt J, Armetta C, Yabroff KR, Liang W, Lawrence W: Descriptive review of the literature on breast cancer outcomes: 1990 through 2000. Journal of the National Cancer Institute Monographs 2004, 33: 8–44. 10.1093/jncimonographs/lgh003

Rosser JE, Maguire P: Dilemmas in General-Practice - the Care of the Cancer-Patient. Social Science and Medicine 1982,16(3):315–322. 10.1016/0277-9536(82)90341-0

Maguire P: Barriers to Psychological Care of the Dying. British Medical Journal 1985,291(6510):1711–1713.

Schor EL, Lerner DJ, Malspeis S: Physicians' assessment of functional health status and well-being. Archives of Internal Medicine 1995, 155: 309–314. 10.1001/archinte.155.3.309

Wagner AK, Ehrenberg BL, Tran TA, Bungay KM, Cynn DJ, Rogers WH: Patient-based health status measurement in clinical practice: A study of its impact on epilepsy patients' care. Quality of Life Research 1997,6(4):329–341. 10.1023/A:1018479209369

Greenhalgh J, Meadows K: The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: a literature review. Journal of Evaluation in Clinical Practice 1999,5(4):401–416. 10.1046/j.1365-2753.1999.00209.x

Finlay IG, Dunlop R: Quality of life assessment in palliative care. Annals of Oncology 1994,5(1):13–18.

Ganz PA: Impact of quality of life outcomes on clinical practice. Oncology 1995,9(11):61–65.

Bezjak A, Ng P, Taylor KM, Macdonald K, Depetrillo AD: A preliminary survey of oncologists perceptions of quality of life information. Psycho-Oncology 1997, 6: 107–113. Publisher Full Text 10.1002/(SICI)1099-1611(199706)6:2<107::AID-PON251>3.0.CO;2-B

Sprangers MA, Schwarz CE: Integrating response shift into health-related quality of life research: A theoretical model. Social Science and Medicine 1999, 48: 1507–1515. 10.1016/S0277-9536(99)00045-3

Beck AT, Steer RA, Garbin MG: Psychometric properties of the Beck Depression Inventory: Twenty-five Years of Evaluation. Clinical Psychology Review 1988, 8: 77–100. 10.1016/0272-7358(88)90050-5

Levine MN, Guyatt GH, Gent M, De Pauw S, Goodyear MD, Hryniuk WM, Arnold A, Findlay B, Skillings JR, Bramwell VH, et al.: Quality of life in stage II breast cancer: an instrument for clinical trials. Journal of Clinical Oncology 1988,6(12):1798–1810.

Ganz PA, Day R, Ware JE Jr., Redmond C, Fisher B: Base-line quality-of-life assessment in the National Surgical Adjuvant Breast and Bowel Project Breast Cancer Prevention Trial. J Natl Cancer Inst 1995,87(18):1372–1382. 10.1093/jnci/87.18.1372

Day R, Ganz PA, Costantino JP, Cronin WM, Wickerham DL, Fisher B: Health-related quality of life and tamoxifen in breast cancer prevention: a report from the National Surgical Adjuvant Breast and Bowel Project P-1 Study. Journal of Clinical Oncology 1999,17(9):2659–2669.

Lattimore-Foot GG: Needs assessment in tertiary and secondary oncology practice: a conceptual and methodological exposition. PhD thesis. University of Newcastle, Newcastle; 1996.

Cossich T, Schofield P, McLachlan SA: Validation of the cancer needs questionnaire (CNQ) short-form version in an ambulatory cancer setting. Qual Life Res 2004,13(7):1225–1233. 10.1023/B:QURE.0000037496.94640.d9

Heinrich RL, Schag CC, Ganz PA: Living with cancer: the Cancer Inventory of Problem Situations. Journal of Clinical Psychology 1984,40(4):972–980. Publisher Full Text 10.1002/1097-4679(198407)40:4<972::AID-JCLP2270400417>3.0.CO;2-W

Turner J, Kelly B, Swanson C, Allison R, Wetzig N: Psychosocial impact of newly diagnosed advanced breast cancer. Psycho-Oncology 2005,14(5):396–407. 10.1002/pon.856

Radloff LS: The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement 1977, 1: 385–401. 10.1177/014662167700100306

Irwin M, Artin KH, Oxman MN: Screening for depression in the older adult: criterion validity of the 10-item Center for Epidemiological Studies Depression Scale (CES-D). Archives of Internal Medicine 1999,159(15):1701–1704. 10.1001/archinte.159.15.1701

Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K: The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. Journal of Palliative Care 1991,7(2):6–9.

Chang VT, Hwang SS, Feuerman M: Validation of the Edmonton Symptom Assessment Scale. Cancer 2000,88(9):2164–2171. Publisher Full Text 10.1002/(SICI)1097-0142(20000501)88:9<2164::AID-CNCR24>3.0.CO;2-5

Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, Dehaes J, Kaasa S, Klee M, Osoba D, Razavi D, Rofe PB, Schraub S, Sneeuw K, Sullivan M, Takeda F: 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. 10.1093/jnci/85.5.365

McLachlan SA, Devins GM, Goodwin PJ: Validation of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (QLQ-C30) as a measure of psychosocial function in breast cancer patients. European Journal of Cancer 1998,34(4):510–517. 10.1016/S0959-8049(97)10076-4

Sprangers MAG, Groenvold M, Arraras JI, Franklin J, teVelde A, Muller M, Franzini L, Wiliams A, deHaes H, Hopwood P, Cull A, Aaronson NK: The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: First results from a three-country field study. Journal of Clinical Oncology 1996,14(10):2756–2768.

Brady MJ, Cella DF, Mo F, Bonomi AE, Tulsky DS, Lloyd SR, Deasy S, Cobleigh M, Shiomoto G: Reliability and validity of the Functional Assessment of Cancer Therapy-Breast quality-of-life instrument. Journal of Clinical Oncology 1997,15(3):974–986.

Yost KJ, Yount SE, Eton DT, Silberman C, Broughton-Heyes A, Cella D: Validation of the Functional Assessment of Cancer Therapy-Breast Symptom Index (FBSI). Breast Cancer Res Treat 2005,90(3):295–298. 10.1007/s10549-004-5024-3

Fallowfield LJ, Leaity SK, Howell A, Benson S, Cella D: Assessment of quality of life in women undergoing hormonal therapy for breast cancer: validation of an endocrine symptom subscale for the FACT-B. Breast Cancer Research and Treatment 1999,55(2):189–199. 10.1023/A:1006263818115

Morrow GR, Lindke J, Black P: Measurement of quality of life in patients: psychometric analyses of the Functional Living Index-Cancer (FLIC). Quality of Life Research 1992,1(5):287–296. 10.1007/BF00434942

Sheikh J, Yesavage J: Geriatric Depression Scale: Recent evidence and development of a shorter version. Clinical Gerontologist 1986, 5: 165–173. 10.1300/J018v05n01_09

Lesher EL, Berryhill JS: Validation of the Geriatric Depression Scale--Short Form among inpatients. Journal of Clinical Psychology 1994,50(2):256–260. Publisher Full Text 10.1002/1097-4679(199403)50:2<256::AID-JCLP2270500218>3.0.CO;2-E

Zigmond AS, Snaith RP: The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 1983,67(6):361–370.

Bjelland I, Dahl AA, Haug TT, Neckelmann D: The validity of the Hospital Anxiety and Depression Scale. An updated literature review. Journal of Psychosomatic Research 2002,52(2):69–77. 10.1016/S0022-3999(01)00296-3

Carlsson M, Hamrin E: Measurement of quality of life in women with breast cancer. Development of a Life Satisfaction Questionnaire (LSQ-32) and a comparison with the EORTC QLQ-C30. Quality of Life Research 1996,5(2):265–274. 10.1007/BF00434748

Ware J, Snow K, Kosinski M: SF-36 Health Survey: Manual and Interpretation Guide. Lincoln, RI , Quality-Metric Incorporated; 1993.

Failde I, Ramos I: Validity and reliability of the SF-36 Health Survey Questionnaire in patients with coronary artery disease. Journal of Clinical Epidemiology 2000,53(4):359–365. 10.1016/S0895-4356(99)00175-4

Stein KD, Denniston M, Baker F, Dent M, Hann DM, Bushhouse S, West M: Validation of a modified Rotterdam Symptom Checklist for use with cancer patients in the united states. Journal of Pain and Symptom Management 2003,26(5):975–989. 10.1016/S0885-3924(03)00321-X

Spagnola S, Zabora J, BrintzenhofeSzoc K, Hooker C, Cohen G, Baker F: The Satisfaction with Life Domains Scale for Breast Cancer (SLDS-BC). Breast J 2003,9(6):463–471. 10.1046/j.1524-4741.2003.09603.x

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. Journal of Chronic Diseases 1981,34(12):585–597. 10.1016/0021-9681(81)90058-8

Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group Psychol Med 1998,28(3):551–558. 10.1017/S0033291798006667

da Silva Lima AF, Fleck M, Pechansky F, de Boni R, Sukop P: Psychometric properties of the World Health Organization quality of life instrument (WHOQoL-BREF) in alcoholic males: a pilot study. Quality of Life Research 2005,14(2):473–478. 10.1007/s11136-004-5327-1

Zung WW: A Self-Rating Depression Scale. Archives of General Psychiatry 1965, 12: 63–70.

Thurber S, Snow M, Honts CR: The Zung Self-Rating Depression Scale: convergent validity and diagnostic discrimination. Assessment 2002,9(4):401–405. 10.1177/1073191102238471

Jacobsen PB, Davis K, Cella D: Assessing quality of life in research and clinical practice. Oncology (Williston Park) 2002,16(9 Suppl 10):133–139.

Magruder-Habib K, Zung WWK: Improving Physicians Recognition and Treatment of Depression in General Medical-Care - Results from a Randomized Clinical-Trial. Medical Care 1990,28(3):239–250. 10.1097/00005650-199003000-00004

Rubenstein LV, McCoy JM, Cope DW, Barrett PA, Hirsch SH, Messer KS, Young RT: Improving patient quality of life with feedback to physicians about functional status. Journal of General Internal Medicine 1995,10(11):607–614. 10.1007/BF02602744

Gold I, Baraff LJ: Psychiatric Screening in the Emergency Department - Its Effect on Physician Behavior. Annals of Emergency Medicine 1989,18(8):875–880. 10.1016/S0196-0644(89)80217-3

Mazonson PD, Mathias SD, Fifer SK, Buesching DP, Malek P, Patrick DL: The mental health patient profile: does it change primary care physicians' practice patterns? Journal of the American Board of Family Practice 1996,9(5):336–345.

Detmar SB, Muller MJ, Schornagel JH, Wever LDV, Aaronson NK: Health-related quality-of-life assessments and patient-physician communication - A randomized controlled trial. Jama-Journal of the American Medical Association 2002,288(23):3027–3034. 10.1001/jama.288.23.3027

Street RL, Gold WR, McDowell T: Using Health-Status Surveys in Medical Consultations. Medical Care 1994,32(7):732–744. 10.1097/00005650-199407000-00006

Wasson J, Hays R, Rubenstein L, Nelson E, Leaning J, Johnson D, Keller A, Landgraf J, Rosenkrans C: The short-term effect of patient health status assessment in a health maintenance organization. Qual Life Res 1992,1(2):99–106. 10.1007/BF00439717

Rubenstein LV, Calkins DR, Young RT, Cleary PD, Fink A, Kosecoff J, Jette AM, Davies AR, Delbanco TL, Brook RH: Improving Patient Function - a Randomized Trial of Functional Disability Screening. Annals of Internal Medicine 1989,111(10):836–842.

Kazis LE, Callahan LF, Meenan RF, Pincus T: Health-Status Reports in the Care of Patients with Rheumatoid-Arthritis. Journal of Clinical Epidemiology 1990,43(11):1243–1253. 10.1016/0895-4356(90)90025-K

Taenzer P, Bultz BD, Carlson LE, Speca M, DeGagne T, Olson K, Doll R, Rosberger Z: Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients. Psycho-Oncology 2000, 9: 203–213. Publisher Full Text 10.1002/1099-1611(200005/06)9:3<203::AID-PON453>3.0.CO;2-Y

Bendtsen P, Leijon M, Sommer AS, Kristenson M: Measuring health-related quality of life in patients with chronic obstructive pulmonary disease in a routine hospital setting: Feasibility and perceived value. Health and Quality of Life Outcomes 2003, 1: 5. 10.1186/1477-7525-1-5

Di Maio M, Perrone F: Quality of Life in elderly patients with cancer. Health Qual Life Outcomes 2003,1(1):44. 10.1186/1477-7525-1-44

Le PP, Kohane IS, Weeks JC: Using a pen-based computer to collect health-related quality of life and utilities information. Proceedings of the 19th Annual Symposium on Computer Application in Medical Care 1995, 839–842.

Deyo RA, Carter WB: Strategies for Improving and Expanding the Application of Health-Status Measures in Clinical Settings - a Researcher Developer Viewpoint. Medical Care 1992,30(5):Ms176-Ms186. 10.1097/00005650-199205001-00015

Middeke M, Bauhofer A, Koller M: Computerized visualization of quality of life data of individual cancer patients - the QoL-Profiler. Inflammation Research 2004,53(Supplement 2):S175-S178.

Donaldson M: Using patient-reported outcomes in clinical oncology practice: benefits, challenges and next steps. Expert Rev Pharmacoeconomics Outcomes Res 2006,6(1):87–95. 10.1586/14737167.6.1.87

Moore AA, Siu AL, Partridge JM, Hays RD, Adams J: A randomized trial of office-based screening for common problems in older persons. American Journal of Medicine 1997,102(4):371–378. 10.1016/S0002-9343(97)00089-2

Dowrick C: Does testing for depression influence diagnosis or management by general practitioners? Family Practice 1995,12(4):461–465. 10.1093/fampra/12.4.461

Taenzer PA, Speca M, Atkinson MJ, Bultz BD, Page S, Harasym P, Davis JL: Computerized quality-of-life screening in an oncology clinic. Cancer Practice 1997,5(3):168–175.

Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, Selby PJ: Measuring quality of life in routine oncology practice improves communication and patient well-being: A randomized controlled trial. Journal of Clinical Oncology 2004,22(4):714–724. 10.1200/JCO.2004.06.078

Stiggelbout AM, De Haes JCJM, Kiebert GM, Kievit J, Leer JWH: Tradeoffs between Quality and Quantity of Life: Development of the QQ Questionnaire for Cancer Patient Attitudes. Med Decis Making 1996,16(2):184–192. 10.1177/0272989X9601600211

Apolone G, Filiberti A, Cifani S, Ruggiata R, Mosconi P: Evaluation of the EORTC QLQ-C30 questionnaire: a comparison with SF-36 Health Survey in a cohort of Italian long-survival cancer patients. Ann Oncol 1998,9(5):549–557. 10.1023/A:1008264412398

Pijls-Johannesma MC, Pijpe A, Kempen GI, Lambin P, Dagnelie PC: Health related quality of life assessment instruments: a prospective study on preference and acceptability among cancer patients referred for radiotherapy. Eur J Cancer 2005,41(15):2250–2256. 10.1016/j.ejca.2005.06.019

Morris J, Perez D, McNoe B: The use of quality of life data in clinical practice. Qual Life Res 1998,7(1):85–91. 10.1023/A:1008893007068

Maguire P, Faulkner A, Booth K, Elliott C, Hillier V: Helping cancer patients disclose their concerns. European Journal of Cancer 1996,32A(1):78–81. 10.1016/0959-8049(95)00527-7

Gotay CC, Korn EL, McCabe MS, Moore TD, Cheson BD: Quality-of-life assessment in cancer treatment protocols: research issues in protocol development. J Natl Cancer Inst 1992,84(8):575–579. 10.1093/jnci/84.8.575

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. European Journal of Cancer Care 2002,11(4):245–253. 10.1046/j.1365-2354.2002.00310.x

McDonald C, Barnett G: Medical-record systems. In Medical Informatics: Computer Applications in Health Care. Volume 1. Edited by: Shortliffe E. Boston, MA , Addison-Wesley Longman Publishing Co., Inc.; 1990.

Wilton R, Pennisi AJ: Evaluating the accuracy of transcribed clinical data. Preceedings of the symposium on computer applications in medical care. American Medical Informatics Association 1993, 279–283.

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. Quality of Life Research 1998,7(6):513–519. 10.1023/A:1008826408328

Bliven BD, Kaufman SE, Spertus JA: Electronic collection of health-related quality of life data: Validity, time benefits, and patient preference. Quality of Life Research 2001, 10: 15–22. 10.1023/A:1016740312904

Newell S, Girgis A, Sanson-Fisher R, Stewart J: Are touchscreen computer surveys acceptable to medical oncology patients. Journal of Psychosocial Oncology 1997, 15: 37–46. 10.1300/J077V15N02_03

Sederer LI, Dickey B, Eisen SV: Assessing outcomes in clinical practice. Psychiatric Quarterly 1997,68(4):311–325. 10.1023/A:1025490930088

Wasson J, Keller A, Rubenstein L, Hays R, Nelson E, Johnson D: Benefits and Obstacles of Health-Status Assessment in Ambulatory Settings - the Clinician Point-of-View. Med Care 1992,30(5):Ms42-Ms49. 10.1097/00005650-199205001-00004