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August 24, 1994, Vol 272, No. 8 >
ARTICLE | August 24, 1994

A Critical Appraisal of the Quality of Quality-of-Life Measurements FREE

Thomas M. Gill, MD; Alvan R. Feinstein, MD
[+] Author Affiliations

Reprint requests to Yale University School of Medicine, 333 Cedar St, 17 TMP, PO Box 208025, New Haven, CT 06520-8025 (Dr Gill).


JAMA. 1994;272(8):619-626. doi:10.1001/jama.1994.03520080061045
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References

Objective.  —To evaluate how well quality of life is being measured in the medical literature and to offer a new approach to the measurement.

Data Sources.  —Original English-language articles having the term "quality of life" in their titles were identified from a recent Quality-of-Life Bibliography and from two MEDLINE searches. Articles were eligible for review only if they described or used one or more "quality-of-life" instruments.

Study Selection.  —Twenty-five articles were randomly selected from each of the three data sources.

Data Extraction.  —Each article was reviewed for its compliance with two sets of criteria having several components, which are cited under "Data Synthesis."

Data Synthesis.  —(1) Investigators conceptually defined quality of life in only 11 (15%) of the 75 articles; identified the targeted domains in only 35 (47%); gave reasons for selecting the chosen quality-of-life instruments in only 27 (36%); and aggregated their results into a composite quality-of-life score in only 27 (38%) of 71 eligible articles. (2) No article distinguished "overall" quality of life from health-related quality of life; patients were invited to give their own separate rating for quality of life in only 13 articles (17%); and among 71 eligible articles, patients were asked to supplement the stipulated items with personal responses in only nine (13%) and to rate the importance of individual items in only six (8.5%).

Conclusions.  —Because quality of life is a uniquely personal perception, denoting the way that individual patients feel about their health status and/or nonmedical aspects of their lives, most measurements of quality of life in the medical literature seem to aim at the wrong target. Quality of life can be suitably measured only by determining the opinions of patients and by supplementing (or replacing) the instruments developed by "experts."(JAMA. 1994;272:619-626)

REFERENCES

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3 +
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7 +
Farmer RG, Easley KA, Farmer JM.  Quality of life assessment by patients with inflammatory bowel disease. Cleve Clin J Med . 1992;;59:35-42.
8 +
McClellan WM, Anson C, Birkeli K, Tuttle E.  Functional status and quality of life: predictors of early mortality among patients entering treatment for end stage renal disease. J Clin Epidemiol . 1991;; 44:83-89.
9 +
Ganz PA, Lee JJ, Siau J.  Quality of life assessment: an independent prognostic variable for survival in lung cancer. Cancer . 1991;;67:3131-3135.
10 +
Gelber RD, Goldhirsch A, Cavalli F.  Quality-of-life adjusted evaluation of adjuvant therapies for operable breast cancer. Ann Intern Med . 1991;;114: 621-628.
11 +
Aulikki N, Wiklund I, Lahti T, et al.  Anti-anginal therapy and quality of life: a comparison of the effects of transdermal nitroglycerin and long-acting oral nitrates. J Clin Epidemiol . 1991;;44:989-997.
12 +
Fowler FJ Jr, Wennberg JE, Timothy RP, Barry MJ, Mulley AG Jr, Hanley D.  Symptom status and quality of life following prostatectomy. JAMA . 1988;; 259:3018-3022.
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Lancaster TR, Singer DE, Sheehan MA, et al, for the Boston Area Anticoagulation Trial for Atrial Fibrillation Investigators.  The impact of long-term warfarin therapy on quality of life: evidence from a randomized trial. Arch Intern Med . 1991;;151:1944-1949.
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Guyatt GH, Feeny DH, Patrick DL.  Measuring health-related quality of life. Ann Intern Med . 1993;; 118:622-629.
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Patrick DL, Erickson P. Health Status and Health Policy: Quality of Life in Health Care Evaluation and Resource Allocation . New York, NY: Oxford University Press; 1993;.
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Spilker B. Quality of Life Assessments in Clinical Trials . New York, NY: Raven Press; 1990;.
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Applegate WB, Phillips HL, Schnaper H, et al.  A randomized controlled trial of the effects of three antihypertensive agents on blood pressure control and quality of life in older women. Arch Intern Med . 1991;;151:1817-1823.
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Janes G.  A better life than before: quality of life in people with renal failure. Prof Nurse . 1990;;10: 26-28.
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De Weerdt I, Visser AP, Kok GJ, de Weerdt O, van der Veen EA.  Randomized controlled multi-centre evaluation of an education programme for insulin-treated diabetic patients: effects on metabolic control, quality of life, and costs of therapy. Diabet Med . 1991;;8:338-345.
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Caine N, Harrison SC, Sharples LD, Wallwork J.  Prospective study of quality of life before and after coronary artery bypass grafting. BMJ . 1991;; 302:511-516.
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Ganz PA, Lee JJ, Siau J.  Quality of life assessment: an independent prognostic variable for survival in lung cancer. Cancer . 1991;;67:3131-3135.
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Figures

Tables

Interactive Graphics

Video

Country-Specific Mortality and Growth Failure in Infancy and Yound Children and Association With Material Stature

Use interactive graphics and maps to view and sort country-specific infant and early dhildhood mortality and growth failure data and their association with maternal

1 +
References 46, 57,64, 70, 72, 76, 78, 79, 82, 88, 89.
2 +
Guyatt GH, Veldhuyzen Van Zanten SJ, Feeny DH, Patrick DL.  Measuring quality of life in clinical trials: a taxonomy and review. Can Med Assoc J . 1989;;140:1441-1448.
3 +
Deyo RA.  The quality of life, research, and care. Ann Intern Med . 1991;;114:695-696.
4 +
 Quality of life. Lancet . 1991;;338:350-351.
5 +
Wilkin D, Hallam L, Doggett M. Measures of Need and Outcome for Primary Care . Oxford, England: Oxford University Press; 1992;.
6 +
Bonney S, Finkelstein FO, Lytton B, Schiff M, Steele TE.  Treatment of end-stage renal failure in a defined geographic area. Arch Intern Med . 1978;; 138:1510.
7 +
Farmer RG, Easley KA, Farmer JM.  Quality of life assessment by patients with inflammatory bowel disease. Cleve Clin J Med . 1992;;59:35-42.
8 +
McClellan WM, Anson C, Birkeli K, Tuttle E.  Functional status and quality of life: predictors of early mortality among patients entering treatment for end stage renal disease. J Clin Epidemiol . 1991;; 44:83-89.
9 +
Ganz PA, Lee JJ, Siau J.  Quality of life assessment: an independent prognostic variable for survival in lung cancer. Cancer . 1991;;67:3131-3135.
10 +
Gelber RD, Goldhirsch A, Cavalli F.  Quality-of-life adjusted evaluation of adjuvant therapies for operable breast cancer. Ann Intern Med . 1991;;114: 621-628.
11 +
Aulikki N, Wiklund I, Lahti T, et al.  Anti-anginal therapy and quality of life: a comparison of the effects of transdermal nitroglycerin and long-acting oral nitrates. J Clin Epidemiol . 1991;;44:989-997.
12 +
Fowler FJ Jr, Wennberg JE, Timothy RP, Barry MJ, Mulley AG Jr, Hanley D.  Symptom status and quality of life following prostatectomy. JAMA . 1988;; 259:3018-3022.
13 +
Croog SH, Levine S, Testa MA, et al.  The effects of antihypertensive therapy on the quality of life. N Engl J Med . 1986;;314:1657-1664.
14 +
Lancaster TR, Singer DE, Sheehan MA, et al, for the Boston Area Anticoagulation Trial for Atrial Fibrillation Investigators.  The impact of long-term warfarin therapy on quality of life: evidence from a randomized trial. Arch Intern Med . 1991;;151:1944-1949.
15 +
Guyatt GH, Feeny DH, Patrick DL.  Measuring health-related quality of life. Ann Intern Med . 1993;; 118:622-629.
16 +
Patrick DL, Erickson P. Health Status and Health Policy: Quality of Life in Health Care Evaluation and Resource Allocation . New York, NY: Oxford University Press; 1993;.
17 +
Spilker B. Quality of Life Assessments in Clinical Trials . New York, NY: Raven Press; 1990;.
18 +
Cox DR, Fitzpatrick R, Fletcher AE, et al.  Quality of life assessment: can we keep it simple? J R Stat Soc . 1992;;155(pt 3):353-393.
19 +
Fallowfield L. The Quality of Life . London, England: Souvenir; 1990;.
20 +
Bowling A. Measuring Health: A Review of Quality of Life Measurement Scales . Milton Keynes, England: Oxford University Press; 1991;.
21 +
George LK, Bearon LB. Quality of Life in Older Persons: Meaning and Measurement . New York, NY: Human Sciences Press; 1980;.
22 +
Bergner M.  Quality of life, health status, and clinical research. Med Care . 1989;;27( (suppl 3) ):S148-S156.
23 +
Feinstein AR.  Clinimetric perspectives. J Chronic Dis . 1987;;40:635-640.
24 +
Spilker B, Molinek FR Jr, Johnson KA, Simpson RL Jr, Tilson HH.  Quality of life bibliography and indexes. Med Care . 1990;;28( (suppl 12) ):DS1-DS77.
25 +
Van Knippenberg FC, DeHaes JC.  Measuring the quality of life of cancer patients: psychometric properties of instruments. J Clin Epidemiol . 1988;; 41:1043-1053.
26 +
Guyatt G, Walter S, Norman G.  Measuring change over time: assessing the usefulness of evaluative instruments. J Chronic Dis . 1987;;40:171-178.
27 +
Feinstein AR. Clinimetrics . New Haven, Conn: Yale University Press; 1987;.
28 +
Hunt SM, McKenna SP, McEwen J, Backett EM, Williams J, Pappe E.  A quantitative approach to perceived health status: a validation study. J Epidemiol Community Health . 1980;;34:281-286.
29 +
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 . 1981;;34:585-597.
30 +
Bergner M, Bobbitt RA, Carter WB, Gilson BS.  The Sickness Impact Profile: development and final revision of a health status measure. Med Care . 1981;; 19:787-805.
31 +
Applegate WB, Phillips HL, Schnaper H, et al.  A randomized controlled trial of the effects of three antihypertensive agents on blood pressure control and quality of life in older women. Arch Intern Med . 1991;;151:1817-1823.
32 +
Janes G.  A better life than before: quality of life in people with renal failure. Prof Nurse . 1990;;10: 26-28.
33 +
De Weerdt I, Visser AP, Kok GJ, de Weerdt O, van der Veen EA.  Randomized controlled multi-centre evaluation of an education programme for insulin-treated diabetic patients: effects on metabolic control, quality of life, and costs of therapy. Diabet Med . 1991;;8:338-345.
34 +
Testa MA, Hollenberg NK, Anderson RB, Williams GH.  Assessment of quality of life by patient and spouse during antihypertensive therapy with atenolol and nifedipine gastrointestinal therapeutic system. Am J Hypertens . 1991;;4:363-373.
35 +
Sundar S, Rajan AG, Somani PN, Kumar K.  The effects of antihypertensive agents on the quality of life in Indian hypertensives. Acta Cardiol . 1991;;46:227-235.
36 +
Baker F, Curbow B, Wingard JR.  Role retention and quality of life of bone marrow transplant survivors. Soc Sci Med . 1991;;32:697-704.
37 +
Wiklund I, Comerford MB, Dimenas E.  The relationship between exercise tolerance and quality of life in angina pectoris. Clin Cardiol . 1991;;14: 204-208.
38 +
Caine N, Harrison SC, Sharples LD, Wallwork J.  Prospective study of quality of life before and after coronary artery bypass grafting. BMJ . 1991;; 302:511-516.
39 +
Hunskaar S, Vinsnes A.  The quality of life in women with urinary incontinence as measured by the Sickness Impact Profile. J Am Geriatr Soc . 1991;;39:378-382.
40 +
Ahlmen J.  Quality of life: views among patients on active treatment of uremia. Scand J Urol Nephrol Suppl . 1990;;131:43-46.
41 +
Cunningham AJ, Lockwood GA, Cunningham JA.  A relationship between perceived self-efficacy and quality of life in cancer patients. Patient Educ Couns . 1991;;17:71-78.
42 +
Siosteen A, Lundqvist C, Blomstrand C, Sullivan L, Sullivan M.  The quality of life of three functional spinal cord injury subgroups in a Swedish community. Paraplegia . 1990;;28:476-488.
43 +
Ketiku KK, Ajekigbe AT.  Chemotherapy of breast cancer in Nigerians: side-effects and quality of life. Clin Oncol . 1990;;2:153-155.
44 +
Gram IT, Lund E, Slenker SE.  Quality of life following a false positive mammogram. Br J Cancer . 1990;;62:1018-1022.
45 +
Fossa SD, Aaronson N, de Voogt HJ, da Silva FC.  Assessment of quality of life and subjective response criteria in patients with prostatic cancer. Prog Clin Biol Res . 1990;;357:199-202.
46 +
Moody L, McCormick K, Williams A.  Disease and symptom severity, functional status, and quality of life in chronic bronchitis and emphysema. J Behav Med . 1990;;13:297-305.
47 +
Schag CA, Heinrich RL.  Development of a comprehensive quality of life measurement tool: CARES. Oncology . 1990;;4:135-138.
48 +
Mulrow CD, Aguilar C, Endicott JE, et al.  Quality-of-life changes and hearing impairment: a randomized trial. Ann Intern Med . 1990;;113:188-194.
49 +
Canadian Erythropoietin Study Group.  Association between recombinant human erythropoietin and quality of life and exercise capacity of patients receiving haemodialysis. BMJ . 1990;;300: 573-578.
50 +
Tugwell P, Bombardier C, Buchanan WW, et al.  Methotrexate in rheumatoid arthritis: impact on quality of life assessed by traditional standard-item and individualized patient preference health status questionnaires. Arch Intern Med . 1990;;150:59-62.
51 +
Andrykowski MA, Altmaier EM, Barnett RL, Otis ML, Gingrich R, Henslee-Downey PJ.  The quality of life in adult survivors of allogeneic bone marrow transplantation. Transplantation . 1990;;50: 399-406.
52 +
Meltzer HY, Burnett S, Bastani B, Ramirez LF.  Effects of six months of clozapine treatment on the quality of life of chronic schizophrenic patients. Hosp Community Psychiatry . 1990;;41:892-897.
53 +
Oleske DM, Heinze S, Otte DM.  The diary as a means of understanding the quality of life of persons with cancer receiving home nursing care. Cancer Nurs . 1990;;13:158-166.
54 +
Strang P, Qvarner H.  Cancer-related pain and its influence on quality of life. Anticancer Res . 1990;; 10:109-112.
55 +
Mayou R, Bryant B, Turner R.  Quality of life in non-insulin-dependent diabetes and a comparison with insulin-dependent diabetes. JPsychosom Res . 1990;;34:1-11.
56 +
Bremer BA, McCauley CR.  Quality-of-life measures: hospital interview versus home questionnaire. Health Psychol . 1986;;5:171-177.
57 +
Baird AD, Adams KM, Ausman JI, Diaz FG.  Medical, neuropsychological, and quality-of-life correlates of cerebrovascular disease. Rehabil Psychol . 1985;;30:145-155.
58 +
Bernheim JL, Buyse M.  The Anamnestic Comparative Self-assessment for measuring the subjective quality of life of cancer patients. J Psychosoc Oncol . 1983;;15:25-39.
59 +
Bombardier C, Ware J, Russell IJ, Larson M, Chalmers A, Read JL.  Auranofin therapy and quality of life in patients with rheumatoid arthritis. Am J Med . 1986;;81:565-578.
60 +
Klonoff PS, Costa LD, Snow WG.  Predictors and indicators of quality of life in patients with closed-head injury. Clin Exp Neuropsychol . 1986;; 8:469-485.
61 +
Daughton D, Fix AJ, Kass I, McDonald T, Stevens C.  Relationship between a pulmonary function test (FE V1) and the Adapt Quality-of-Life Scale. Percept Mot Skills . 1983;;57:359-362.
62 +
De Haes JC, Raatgever JW, van der Burg ME, Hamersma E, Neijt JP.  Evaluation of the quality of life of patients with advanced ovarian cancer treated with combination chemotherapy.  In: Aaronson NK, Beckmann J, eds. The Quality of Life of Cancer Patients . New York, NY: Raven Press; 1987;:215-226.
63 +
Deniston OL, Carpentier-Alting P, Kneisley J, Hawthorne VM, Port FK.  Assessment of quality of life in end-stage renal disease. Health Serv Res . 1989;;24:555-577.
64 +
Siegrist J.  Impaired quality of life as a risk factor in cardiovascular disease. J Chronic Dis . 1987;;40:571-578.
65 +
Evans DR, Burns JE, Robinson WE, Garrett OJ.  The Quality of Life Questionnaire: a multidimensional measure. Am J Community Psychol . 1985;;13:305-322.
66 +
Evans RW, Manninen DL, Maier A, Garrison LP Jr, Hart LG.  The quality of life of kidney and heart transplant recipients. Transplant Proc . 1985;; 17:1579-1582.
67 +
Fletcher A, McLoone P, Bulpitt C.  Quality of life on angina therapy: a randomised controlled trial of transdermal glyceryl trinitrate against placebo. Lancet . 1988;;2:4-8.
68 +
Folks DG, Blake DJ, Fleece L, Sokol RS, Freeman AM III.  Quality of life six months after coronary artery bypass surgery: a preliminary report. South Med J . 1986;;79:397-399.
69 +
Gerber A, Apt MK, Craig PH.  The improved quality of life with the Kock continent ileostomy. J Clin Gastroenterol . 1984;;6:513-517.
70 +
Glimelius B, Hoffman K, Olafsdottir M, Pahlman L, Sjoden PO, Wennberg A.  Quality of life during cytostatic therapy for advanced symptomatic colorectal carcinoma: a randomized comparison of two regimens. Eur J Cancer Clin Oncol . 1989;; 25:829-835.
71 +
Grieco A, Long CJ.  Investigation of the Karnofsky Performance Status as a measure of quality of life. Health Psychol . 1984;;3:129-142.
72 +
Ladefoged K.  Quality of life in patients on permanent home parenteral nutrition. JPEN J Parenter Enter Nutr . 1981;;5:132-137.
73 +
Malm U, May RA, Dencker SJ.  Evaluation of the quality of life of the schizophrenic outpatient: a checklist. Schizophr Bull . 1981;;7:477-486.
74 +
Mitchell A, Guyatt G, Singer J, et al.  Quality of life in patients with inflammatory bowel disease. J Clin Gastroenterol . 1988;;10:306-310.
75 +
Morton RP, Davies AD, Baker J, Baker GA, Stell PM.  Quality of life in treated head and neck cancer patients: a preliminary report. Clin Otolaryngol . 1984;;9:181-185.
76 +
O'Brien BJ, Banner NR, Gibson S, Yacoub MH.  The Nottingham Health Profile as a measure of quality of life following combined heart and lung transplantation. J Epidemiol Community Health . 1988;;42:232-234.
77 +
Padilla GV, Presant C, Grant MM, Metter G, Lipsett J, Heide F.  Quality of life index for patients with cancer. Res Nurs Health . 1983;;6:117-126.
78 +
Monahan ML.  Quality of life of adults receiving chemotherapy: a comparison of instruments. Oncol Nurs Forum . 1988;;15:795-798.
79 +
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;;5:472-483.
80 +
Wiklund I, Lindvall K, Swedberg K, Zupkis RV.  Self-assessment of quality of life in severe heart failure: an instrument for clinical use. Scand J Psychol . 1987;;28:220-225.
81 +
Morris JN, Sherwood S.  Quality of life of cancer patients at different stages in the disease trajectory. J Chronic Dis . 1987;;40:545-553.
82 +
Mor V.  Cancer patients' quality of life over the disease course: lessons from the real world. J Chronic Dis . 1987;;40:535-544.
83 +
Hadorn DC, Hays RD.  Multitrait-multimethod analysis of health-related quality-of-life measures. Med Care . 1991;;29:829-840.
84 +
Barr H, Krasner N.  Prospective quality-of-life analysis after palliative photoablation for the treatment of malignant dysphagia. Cancer . 1991;;68:1660-1664.
85 +
Ganz PA, Lee JJ, Siau J.  Quality of life assessment: an independent prognostic variable for survival in lung cancer. Cancer . 1991;;67:3131-3135.
86 +
McClellan WM, Anson C, Birkeli K, Tuttle E.  Functional status and quality of life: predictors of early mortality among patients entering treatment for end-stage renal disease. J Clin Epidemiol . 1991;; 44:83-89.
87 +
Sutherland HJ, Lockwood GA, Boyd NF.  Ratings of the importance of quality of life variables: therapeutic implications for patients with metastatic breast cancer. J Clin Epidemiol . 1990;;43: 661-666.
88 +
North CA, North RB, Epstein JA, Piantadosi S, Wharam MD.  Low-grade cerebral astrocytomas: survival and quality of life after radiation therapy. Cancer . 1990;;66:6-14.
89 +
Ganz PA, Schag CC, Cheng HL.  Assessing the quality of life: a study in newly diagnosed breast cancer patients. J Clin Epidemiol . 1990;;43:75-86.
90 +
Ferrell BR, Wisdom C, Wenzl C.  Quality of life as an outcome variable in the management of cancer pain. Cancer . 1989;;63:2321-2327.
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Epstein AM, Hall JA, Tognetti J, Son LH, Conant L Jr.  Using proxies to evaluate quality of life: can they provide valid information about patients' health status and satisfaction with medical care? Med Care . 1989;;27( (suppl 3) ):S91-S98.
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Ganz PA, Haskell CM, Figlin RA, La Soto N, Siau J.  Estimating the quality of life in a clinical trial of patients with metastatic lung cancer using the Karnofsky Performance Status and the Functional Living Index—Cancer. Cancer . 1988;;61:849-856.
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Oldenburg B, MacDonald GJ, Perkins RJ.  Prediction of quality of life in a cohort of end-stage renal disease patients. J Clin Epidemiol . 1988;;41: 555-564.
94 +
Patrick DL, Danis M, Southerland LI, Hong G.  Quality of life following intensive care. J Gen Intern Med . 1988;;3:218-223.
95 +
Kaplan RM, Hartwell SL, Wilson DK, Wallace JP.  Effects of diet and exercise interventions on control and quality of life in non—insulin-dependent diabetes mellitus. J Gen Intern Med . 1987;;2:220-227.
96 +
O'Brien BJ, Buxton MJ, Ferguson BA.  Measuring the effectiveness of heart transplant programmes: quality of life data and their relationship to survival analysis. J Chronic Dis . 1987;;40( (suppl 1) ):137S-153S.
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Lomas J, Pickard L, Mohide A.  Patient versus clinician item generation for quality-of-life measures: the case of language-disabled adults. Med Care. 1987;;25:764-769.
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Osband ME, Lavin PT, Babayan RK, et al.  Effect of autolymphocyte therapy on survival and quality of life in patients with metastatic renal-cell carcinoma. Lancet . 1990;;335:994-998.
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Evans RW, Rader B, Manninen DL, and the Cooperative Multicenter EPO Clinical Trial Group.  The quality of life of hemodialysis recipients treated with recombinant human erythropoietin. JAMA . 1990;;263:825-830.
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Coates A, Gebski V, Bishop JF, et al.  Improving the quality of life during chemotherapy for advanced breast cancer: a comparison of intermittent and continuous treatment strategies. N Engl J Med . 1987;;317:1490-1495.
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Jayawardhana BN, Moghissi K, Knox J.  Quality of life of elderly people after surgery for benign oesophageal stricture. BMJ . 1989;;299:1504-1505.
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Guez D, Crocq L, Safavian A, Labardens P.  Effects of indapamide on the quality of life of hypertensive patients. Am J Med . 1988;;84:53-58.
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Harris DC, Chapman JR, Stewart JH, Lawrence S, Roger SD.  Low dose erythropoietin in maintenance haemodialysis: improvement in quality of life and reduction in true cost of haemodialysis. Aust N Z J Med . 1991;;21:693-700.
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Maguire P, Selby P.  Assessing quality of life in cancer patients. Br J Cancer . 1989;;60:437-440.

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To understand the clinical management of acute heart failure syndromes.
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