Assessing the Quality

of Life of Elderly

Persons

Marquis D. Foreman and Ruth Kleinpelt

P

ROVIDING HEALTH care for elderly persons with a diagnosis of cancer creates a challenge to health care professionals. Acceptable outcomes are more difficult to achieve in elderly patients, who have diminished physiologic reserve and a multiplicity of chronic health problems. It is sometimes even questioned whether acceptable outcomes are possible for the elderly. Complicating matters is the perception that the elderly consume more than their fair shareof the health care resources. The elderly, those individuals aged65 years and older, comprise only 12% of the US population, and yet they accountfor the expenditure of approximately one third of all health careresources.r This situation is expected to worsen because: (a) the elderly, especially those 80 yearsof age and older, are the most rapidly expanding segment of the U. S. population*; (2) the risk of developing cancer doubles every 5 years after age 25, establishing age as the single most important risk factor in the development of cancers*4;and (3) approximately 50% of all cancersoccur in personsaged 65 years and older.5-7Thus, as the numbers of elderly persons grow, so will the demands on health care resources.The situation is confounded by the fact that many individuals perceive the elderly as no longer making substantivecontributions to society. These factors have resulted in the questioning of the appropriatenessof providing cancer treatment to elderly patients. The assessmentof quality of life has been suggestedas one method to determinewhether acceptable outcomes have been achieved for elderly patients.8An assessmentof an individual’s quality of life could provide information for determining parametersfor making decisions about the allocaFrom the Department of Medical-Surgical Nursing, College of Nursing, University of Illinois at Chicago, Chicago, IL. Marquis D. Foreman, PhD, RN: Assistant Professor; Ruth Kleinpell, MS, RN, CCRN: Doctoral Candidate. Address reprint requests to Marquis D. Foreman, PhD, RN, University of Illinois at Chicago, Department of MedicalSurgical Nursing, College of Nursing (m/c 802), 845 S Damen Ave. Chicago, IL 40612. 0 1990 by W.B. Saunders Company. 0749-2081/90@6@4-0008$05.00i0

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tion or withdrawal of health care resources.It has been suggested’ that points on the quality of life continuum be identified for making decisions about the use of health care resources. Additionally, an assessmentof an individual’s quality of life could be useful in evaluating the efficacy and cost-effectiveness of a given therapy. Thus, it could be said that the ultimate purpose of an assessmentof the quality of life is to ensure that an individual’s health care needs are met. As such, the assessmentof quality of life may have greater relevanceand importance for the making of health care decisions about the elderly than for any other age group. The assessmentof an elderly individual’s quality of life can provide information useful for purposesother than making decisions about the allocation of health care resources and services. Information about the quality of an individual’s life can provide clinicians with data for choosing a specific treatmentprotocol, for justifying or refuting various medical therapies, and for evaluating the benefits and hazards of various treatments.’ Such information is especially important for elderly persons with cancer, as responsesto treatmentsare more difficult to anticipate in the elderly and becauseof the presence of other concurrent multiple chronic health conditions affecting their health status. To use quality of life as a measureof effective treatment, reliable and valid data are mandatory. However, characteristicsof the aging patient, cancer and its treatment, the environment, and the instrument(s) used to assessthe quality of life can influence the reliability and validity of this assessment. Thesecharacteristicscan act separatelyor be interactive. Key issues for obtaining reliable and valid assessmentdata about the quality of life of elderly personswith cancer follow. CHARACTERISTICS OF INSTRUMENTS

Conceptual Issues

There are several conceptual issues influencing the reliability and validity of the evaluation of the quality of life of elderly personswith cancer such as: (1) the dimensions used to conceptualize the

Seminars in Oncology Nursing, Vol6,

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phenomenon “quality of life,” (2) objective versus subjective evaluation, and (3) quality versus quantity of life (Table 1). Regardingthe dimensionsusedto measurequality of life, someadvocatea global evaluation of the quality of life by simply asking the respondent “What is the quality of your life,“‘oY1’ or by asking them to mark off a quantity on a line.12*13 Although these approacheshave the advantagesof not posing great burden to the respondentand allowing almost instantaneousquantification, they lack sensitivity and precision of measurement.As a result, the information obtained does not facilitate comparisonsof the quality of life over time, as the lack of sensitivity obscuressmall changes.Additionally, global evaluations fail to show the nature of the phenomenon or what aspects of the quality of life change during the course and treatment of the cancer. Quality of life also is equated frequently with physical functioning or the ability to perform certain tasks. The Kamofsky Performance Status (KPS)14is the instrument most frequently used in cancerclinical trials. Although the KPS hasproven useful in determining that control and experimental groups are equivalent regarding performancestatus at baseline, it inadequatelyrepresentsthe complexities of the quality of life. Furthermore, the KPS is generally insensitive to small changes in performanceover time. Relative to the elderly, the ability to assesschange in physical functioning over time is confounded becausethe physical parameters evaluated by the KPS typically decline with aging. Thus, it is unclear whether the changesin physical performanceobservedwith the KPS are a result of aging or of the cancer and its treatment. Although the KPS has been used widely in cancer Table 1. Issues in Assessing the Quality Patients With Cancer

of Lie of Elderly

Issues Conceptual Comprehensive v partial Subjective v objective Qualitative v quantitative Operational Length of the instrument Size of print and readability of the instrument Speed of presentation Response format of the instrument

clinical trials, its limitations preclude recommending it as a method for measuringthe quality of life in this patient population. Generally, multidimensional conceptualizations of the quality of life include the following dimensions: socioeconomic status, physical health status, functional ability, relationships with family and friends, psychological emotional status, religious beliefs, life satisfaction, and achievementof life goals.15-17For the elderly, the various dimensions of the quality of life may differ from those of younger persons. For example, older personstend to be more satisfied with housing, community, family, marriage, and with life in general than younger persons.“,‘* However, satisfaction with health has been found to decreasewith advancing age.l6 The importance of the physical dimension, ie, physical health and functional status, may play a more important part in overall quality of life for the elderly. A decreasein functional ability for the elderly often means a loss of independenceand a potential change in quality of life.” Examination of the dimensions used to gather quality of life assessmentdata for elderly oncology populations is requisite to evaluating the data. Incorporation of measuresof the dimensionsof physical health and functional statusare very important when assessingquality of life or when examining changesin quality of life of the elderly .*’ A second conceptual issue is the debate about the subjective versus objective evaluation of the quality of life, discussed in greater detail elsewhere in this issue. Measuring the quality of life in elderly persons can be different from measuring quality of life in younger persons, as objective indicators such as occupation, work, income, and housing may not play as relevant a part in an elderly person’s life.21 In addition to being a measurementissue, the use of objective versus subjective measuresof the quality of life will influence the type of data obtained about the quality of life. Inclusion of subjective measuresof quality of life can facilitate accurate descriptions of the elderly patient’s cancer experience. Lastly, the issue of whether quantity of life determines quality of life clearly warrants discussion when addressingquality of life of elderly cancer patients. Age is an inadequate measure of the amount of quality of life one has had over a lifetime. ’ It cannot be assumedthat becauseone is

FOREMAN

older, one has a better or worse quality of life. The benefits of a cancer treatment, drug, or surgery should be evaluatedin terms of the effect it has on elderly patient’s quality of life. The length of life does not determine the quality of life; instead, it has been proposedthat quantity is actually one of many life qualities.** The goal in cancer treatment for the elderly patient should be to promote well-being and meaning in life, not just lengthen life. Treatment care goals for the elderly cancer patient that can contribute to promoting feelings of well-being include relieving pain, promoting independence,and preserving or improving functional status.The overall goal is for the patient to meet his or her needsand to perform tasksof daily living while maintaining a satisfying life in his or her current life situation.23 Operational Issues

In addition to the conceptual issues discussed above, several practical issues(enumeratedin Table 1) must be considered to ensure a valid and reliable assessmentof the quality of life of elderly persons with cancer. First is the length of the instrument to be used. Especially with elderly personswith poor health status,lengths of instruments at either extremecan createproblems with the psychometric properties of the instrument. Instrumentscomposedof many items can physically and cognitively fatigue elderly subjects, and, as a result, create data of questionable reliability and validity.24 Conversely, instruments of too few items frequently fail to capture adequatelythe essential aspects of multidimensional phenomena such asthe quality of life. As a result, investigators and clinicians must negotiate a compromise between instruments that contain a sufficient number of items to collect adequatedata and those that are of a length that does not fatigue the subject. This compromise is made more complex as those subjects of prime interest to researchersand clinicians are typically those with poor health status,those in whom the difference between too few and too many items becomesless distinct (eg, elderly persons with cancer). A secondoperational issue is the level of readability of the instrument. Becausethe elderly tend to be less educated, the level of difficulty of the vocabulary used must be examined. It is recommended that vocabulary at the third to fifth grade level be used to ensure that the items are readily

AND KLEINPELL

understandableto elderly subjects.” In regard to readability, the size of the print is an aspectthat is more directly relevant to self-administered instruments. As a result of diminished visual acuity in the elderly, larger and bolder print face should be used. Further relative to print size are the visual sideeffects(eg, blurring, halo effects)of the various pharmacologicagentsusedin this patientpopulation. A third aspect of instruments to be considered for use with elderly subjects is the speed of the presentationof the items to the elderly individual. Because of both age and illness effects, items should be presented more slowly. Kim*’ recommends a self-paced approach for health assessment. A self-paced approach allows the elderly person as much time as is needed and, thereby leads to more accurateand appropriate responses. Collecting data in this manner allows the older person to respond adequately. Older persons, when rushed or given the impression that there are time constraints, tend to becomeanxious and, as a result, respond incompletely or erroneously.25In either event, unusable data are generated. The last aspect is the response format of the instrument. Quality of life instruments frequently are constructedwith a Likert-type responseformat. Investigators generally prefer a greater number of responsecategories, as this provides more precise data; however, there are limits to subjects’ abilities to discriminate accurately among the responsecategories. For elderly subjects,Georgeand Bearon” recommenda continuum of five responsecategories, eg, strongly disagree, disagree, no opinion, agree, and strongly agree. To obviate someof the problems associatedwith Like&type scales, the use of a linear or visual analogueformat has been recommended.13926 The visual analogue format consists of a lo-cm line, generally horizontal, anchored at each end with labels representingpolar extremes of the variable being evaluated. For example, when evaluating pain using this format, the anchors could be “no pain” (at 0 cm) and “the worst pain I can possibly imagine” (at 10 cm). The respondent places a slashthrough the line indicating his or her feelings at the moment. The advantagesof the visual analogue format are that it is brief and easy to use and promotes the transformation of a subjective response that is readily quantifiable. However, severa113*24,26 investigators have reported difficulty in using this format with elderly persons, and

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as a result, question the reliability and validity of data generatedwith this format. CHARACTERISTICS OF THE ENVIRONMENT

The environment in which an individual’s quality of life is evaluated also can readily influence the reliability and validity of the data generated (Table 2). The relationship betweenthe patient and the evaluator is of special importance. If the evaluator is the patient’s primary health care provider, the possibility exists that the patient will feel compelled to provide more socially acceptable responsesto the items rather than to respondfrankly. Responding frankly may be perceived by the patient as offensive to the evaluator (primary health care provider) and, therefore, to be avoided. In such circumstances,the patient also may feel coerced into participating. Although informed consent and ethical research practices are meant to guarantee that this does not occur, blurring the distinctions between patient-subject and providerresearchercan lead to instancesof intimidation and subtle coercion. Location of the assessmentalso must be considered. Within health care settings, an environment that provides privacy and comfort (relative to ambient temperatureand space)and is not distracting is one that promotesvalid and reliable data. Additionally, if the primary aim of the patient’s presence is to receive treatment, the relationship between the treatment and the assessmentof the quality of life must be examined. An assessment that keeps a patient waiting too long for treatment has the potential to increase the patient’s anxiety and, therefore, can adverselybias responses.Conversely, assessmentafter treatment can be adversely biased by the side effects of such treatment, eg, nausea,vomiting, fatigue, pain, and/or sedation.Ideally, the quality of life should be evaluated before, during, and after treatment. Repeated measurementsof the quality of life across the span of the disease and its treatment would provide vital information into the natural history of Table 2. Characte&tics of the Environment Affecting the Quality of Life Assessment of an Elderly Patient With Cancer Face-to-face Location Timing

interview

v self-administered

instruments

of the interview of the interview

leg, before

v after chemotherapy)

the quality of life relative to the courseof the cancer. It is clear that thesevarious aspectsof the environmentin which the quality of life is evaluatedarevery important to obtaining valid and reliable data. RECOMMENDATIONS: THE CLINICAL UTILITY OF INFORMATION ABOUT THE QUALITY OF LIFE

Quality of life assessmentdata for the elderly patient with cancer should be used to plan, implement, and evaluate treatment protocols. Yet, data are generally lacking about the quality of life for this patient population since they are frequently excluded, on the basis of their age, from many clinical researchtrials. These data, however, are mandatory for modifying and thereby individualizing treatment in order to minimize adverse effects and maximize the benefits of such therapy. Treatmentprotocols may be altered if it is found that the quality of life of the elderly cancer patient is adversely affectedby a certain treatment or procedure. For instance, palliative rather than radical surgical proceduresmay be performed on elderly cancerpatients with advanceddiseaseif quality of life is shown to deteriorate postoperatively after radical surgical procedures. Conversely, treatment interventions that were previously believed not to benefit or to adversely affect the quality of life of elderly cancer patients may be shown to be beneficial. Primary radiation therapy or antineoplastic therapy are examples of treatmentsthat elderly patients may not be receiving as aggressively as younger patients. Recent research on these two treatment modalities with elderly subjectshas shown that the elderly experience treatment effects similar to those of younger patients. While data about the age-relatedchanges in pharmacology of chemotherapeutic agents are limited, elderly patients have demonstrated responserates and rates of toxicity comparablewith those of younger patients.27*28 In analyzing 19 studies of advancedcancer that included 780 persons 70 years of age and older, Begg and Carbone27studied the susceptibility of elderly patients to cancer chemotherapyand found that elderly patients have responserates and survival expectancies equivalent to nonelderly patients. Similarly, radiation therapy hasbeen shown to be as valuable in elderly patients as in younger patient populations.29 Researchregarding the effects of specific cancer

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treatment protocols and resultant changes in the quality of life of elderly patients with cancer is warranted. Quality of life should be a primary outcome variable in cancer nursing.30 Interventions that focus on detection of cancerin elderly patients are especially important, as signs and symptomsof a malignancy may be viewed as a part of normal aging. Becauseelderly personsalso have multiple chronic health conditions, early symptomsof malignancy can be attributed to other concurrent illnessesor to side effects of medicationsrather than to the cancer.31Symptoms such as constipation, weight loss, anorexia, and fatigue may be overlooked or misattributed.32 Nursing care goals to improve the elderly cancer patient’s quality of life should be aimed at promoting comfort; providing for rest; managing side effects of chemotherapyand radiation such asnausea and vomiting, anorexia, and fatigue; and promoting optimal functional leve1.23*33*34

AND KLEINPELL

CONCLUSIONS

Nursing care should be aimed at maintaining and promoting quality of life for the elderly cancer patient. The inclusion of quality of life data can facilitate the delivery of high quality nursing care. Yet, to be used appropriately in clinical situations and research, quality of life assessmentdata for elderly cancer patients should be valid and reliable. Only credible data should be used to influence decisions about interventions and treatment protocols. Knowledge about quality of life holds much potential for influencing cancer care of the elderly. However, data are lacking about the quality of life of elderly cancerpatients relative to specific types and stagesof cancer and individual responses to treatment.27,35Nursing research that focuses on elderly oncology patients is important as the health care needsof this patient population are rapidly expanding.

REFERENCES 1. Office of Technology Assessment:Life-Sustaining Technologies and the Elderly. Washington, DC, US Government Printing Office, 1987 2. American Association of Retired Persons:A Profile of Older Americans. Washington, DC, The Association, 1988 3. Crawford J, CohenHJ: Relationshipof cancerand aging. Clin Geriatr Med 3:419-431, 1987 4. FeussnerJR, Simel DL, Matchar DB: Quantitative approachesto clinical diagnosisof cancerin elderly patients. Clin Geriatr Med 3447-461, 1987 5. Frank-StromborgM: Futureprojectedtrendsin the care of elderly individuals with cancer, and implications for nursing. Semin Oncol Nurs 4:224-231, 1988 6. US Bureau of the Census: Statistical abstract of the United States. Washington, DC, US GovernmentPrinting Office, 1988 7. Weimich SP, NussbaumJ: Cancer in the elderly: Early detection. Cancer Nurs 7:475-482, 1984 8. Callahan D: Health care in the aging society: A moral dilemma, in Pifer A, Bronte L (ed): Our Aging Society: Paradox and Promise. New York, NY, Norton, 1986, pp 319-339 9. Goodinson SM, Singleton J: Quality of life: A critical review of current concepts, measuresand their clinical implications. Int J Nurs Stud 26:327-341, 1989 10. Clark A, Fallowfield LJ: Quality of life measurementsin patients with malignant disease: A review. J R Sot Med 79:165-169, 1986 11. Fayers PM, JonesDR: Measuring and analyzing quality of life in cancer clinical trials: A review. Stat Med 2:429-446, 1983 12. Spitzer WO, Dobson AJ, Hall J, et al: Measuring the quality of life of cancerpatients:A conciseQL-Index for useby physicians. J Chron Dis 34585-597, 1981

13. PriestmanTJ, Baum M: Evaluation of quality of life in patientsreceiving treatmentfor advancedbreast cancer. Lancet 1:899-900, 1976 14. Schag CC, Heir&h RL, Ganz PA: Kamofsky Performance Status revisited: Reliability, validity, and guidelines. J Clin Oncol 2:187-193, 1984 15. Andrews F, Withey S: Social Indicators of Well-Being. New York, NY, Plenum, 1976 16. Campbell A, Converse P, Rodgers W: The Quality of American life. New York, NY, Russell Sage Foundation, 1976, pp 1-17 17. FerransCE, PowersMJ: Quality of life index: Development and psychometricproperties. Adv Nurs Sci 8: 15-24, 1985 18. Herzog AR, Rodgers WL: Satisfaction among older adults,in AndtewsFM (ed):Researchon the Quality of Lie. Ann Arbor, MI, University of Michigan Ptess, 1986,pp 235-251 19. George LK, Bearon LB: Quality of Life in Older Persons:Meaning and Measurement.New York, NY, Human Sciences, 1980 20. Alexander JL, Willems EP: Quality of life: Some measurementrequirements. Arch Phys Med Rehabil 62:261-265, 1981 21. Krupinski J: Health and quality of life. Sot Sci Med 14A:203-211, 1980 22. Pearlman RA, Speer JB Jr: Quality-of-life considerations in geriatric care. J Am Geriatr Sot 31:113-120, 1983 23. Dugan SO, Scallion LM: Nursing care of elderly persons throughoutthe cancerexperience: A quality of life framework. Clin Geriatr Med 3:517-531, 1987 24. Foreman MD: Reliability and validity of mental status questionnaires in elderly hospitalized patients. Nurs Res 36:216-220, 1987 25. Kim KK: Responsetime and health care learning of elderly patients. Res Nurs Health 9:233-239, 1986

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26. Ganz PA, Haskell CM, Figlin RA, et al: Estimating the quality of life in a clinical trial of patients with metastatic lung cancer using the Kamofsky Performance Status and the Functional Living Index-Cancer. Cancer 61849856, 1988 27. Begg CB, Carbone PP: Clinical trials and drug toxicity in the elderly. Cancer 52:1986-1992, 1986 28. Hutchins LF, Lipschitz DA: Cancer, clinical pharmacology, and aging. Clin Geriatr Med 3:483-503, 1987 29. Cracker I, Prosnitz L: Radiation therapy of the elderly. Clin Geriatr Med 3:473-481, 1987 30. Padilla GV, Grant MM: Quality of life as a cancer nursing outcome variable. Adv Nurs Sci 8:45-60, 1985

31. Frank-Stromborg M: The role of the nurse in early detection of breast cancer: Population sixty-six years of age and older. Oncol Nurs Forum 1366-74, 1986 32. Given B, Given W: Cancer nursing for the elderly. Cancer Nurs 12:71-77, 1989 33. Dellefield ME: Caring for the elderly patient with cancer. Oncol Nurs Forum 13:19-27, 1986 34. Ellison SA: Geriatric oncology: A developmental approach. Cancer Nurs 8:28-32, 1985 35. Haber H, Saito N, Sato Y, et al: Quality of life in gastric cancer patients seventy years of age and over. Intern Surg 73:82-86, 1988

Assessing the quality of life of elderly persons.

Quality of life assessment data for the elderly patient with cancer should be used to plan, implement, and evaluate treatment protocols. Yet, data are...
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