© 1991 S. Karger AG, Basel 0042-1138/91 /0463-0246S 2.7 5/0
Urol Int 1991;46:246-251
Quality of Life: How Is It Measured and Defined? Sheila Breslin University of California Medical Center, Department of Urology, San Francisco, Calif., USA
Key Words. Qualitiy of life • Urologic neoplasms • Measurement tools • Oncology
Introduction Cancer is the second leading cause of death in the United States. It is estimated that over 1 million new cases of cancer will be diagnosed in 1991. Urologic malignancies are expected to account for approximately 32% of all cancer occurrences in men and for 4% in women. Mortality rates were estimated at 17 and 3%, respectively [1], With recent advances in early detection and treatment, long-term survival for cancer patients is approaching 50%. However, the quality of that survival has not been adequately assessed [2, 3], Some studies suggest that definitive treatment for various types of cancer may result in physical and/or psychological disability in 16-64% of patients for up to 5 years following treatment. In addition, treatment plans which employ more than one modality (e.g. chemother apy + radiation therapy) may increase the duration of
dysfunction. This may be due to cumulative toxicities and/or advanced stage of disease [4], One study comparing quality of life among cancer patients (inpatients receiving chemotherapy, outpatients receiving chemotherapy, and outpatients receiving ra diation therapy) and a nonpatient control group revealed that nonpatients had the best quality of life whereas che motherapy inpatients had the poorest. The authors con clude that these results reflect, in part, the toxicities asso ciated with treatment [5], Symptom distress as a result of disease or treatment has been shown to adversely affect life quality. A study of 36 lung cancer patients demonstrated a significant (p = 0.05) inverse relationship between symptom distress and quality of life during active treatment [6]. Similar results were obtained by Young and Longman [7] and Graham and Longman [8] in their studies of patients with melanoma.
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Abstract. Quality of life is an abstract concept which encompasses an individual’s perceived level of physical, psychological, and social well-being. It is a highly subjective phenomenon, mediated by one’s personal and cultural values and beliefs, self-concept, goals, and life experiences. Some studies have demonstrated that an individual’s quality of life may be influenced negatively by a diagnosis of cancer and/or the sequelae of treatment. Concerns about quality of life issues may affect a patient’s choice of treatment options or compliance with treatment regimens. Although there is no universally agreed-upon instrument to measure quality of life, researchers are increasingly utilizing multidimensional patient self-assessment tools in lieu of physician-rated performance status scales. Recent advances in detection and treatment may improve quality of life for patients with urologic malignancies. Cancer treatment which extends quantity while maintaining or improving quality of life is the mandate of care for the future.
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Concept Definition What is meant by the concept ‘quality of life’? Ethicist Michael Bayles [18] argues that life is not intrinsically valuable but rather that consciousness of various charac teristics or qualities of life is what gives it its meaning. What then are the qualities that make life worth liv ing? Quality of life has been defined as ‘an abstract and complex term representing individual responses to the physical, mental and social factors which contribute to ‘normal’ daily living’ [19], Young and Longman [7] described it as ‘the degree of satisfaction with present life circumstances perceived by the person’. Aaronson [20] defined the concept from a health-related framework as ‘a multidimensional construct composed minimally of the following four domains: functional status, diseaserelated and treatment-related symptoms, psychological functioning, and social functioning’. Welch-McCaffrey [21] outlined three dimensions that affect quality of life of cancer patients: social factors, physiological factors, and psychological factors. Social factors include social dependence, life-style changes, time spent within the medical system, and ability to return to work. Physiological determinants include symptoms distress, performance level, freedom from pain, and sexual activity. Psychological variables include behavior and morale, freedom from stress, degree of happiness, degree of satisfaction, purpose of life, anxiety and self-esteem. The results of a study by Padilla and Grant [22], eval uating the impact of nursing interventions on cancer patients, validated Welch-McCaffrey’s observations. The investigators found that physical well-being, psycho
logical well-being, and symptom control were the three most important aspects of quality of life to this patient population.
Measurement Issues The concept of quality of life is a highly subjective phenomenon mediated by one’s personal and cultural values and beliefs, self-concept, goals, and life experi ences [23-25]. What is perceived as negative by one per son may be seen in an entirely different light by another, including the researcher. Studies have demonstrated that correlations between physicians’ ratings of patient qual ity of life and patients’ evaluations using a self-assess ment tool, although positive, were poor [5, 17, 26]. In addition, interrater reliability is reportedly low [27], The use of self-assessment tools is therefore more likely to reflect accurate data than observer-rated tools. Dean [28] advocates use of multiple instruments to measure this complex concept. This approach, she as serts, ‘allows flexibility in the conceptualization of qual ity of life while permitting comparability of specific dimensions across studies’. However, as she also points out, time constraints and potential confusion to patients must be considered when administering more than one instrument. Aaronson [20] argues for use of a disease-specific, treatment-specific self-assessment questionnaire that may be incorporated into a core health-related quality of life questionnaire. This approach addresses several im portant difficulties in measuring quality of life: the vari ance in symptoms and psychosocial sequelae by cancer site and treatment choice, comparisons of results across studies where different assessment tools have been uti lized, and the fact that the health care system can only impact health-related aspects of a patient’s quality of life. Other researchers stress the need to assess the impor tance of any alteration in quality of life from the individ ual’s perspective, pointing out that a change in body image or functional ability may be perceived and experi enced quite differently by one person than by another [3]. Accordingly, Ferrans and Powers [29] developed a 64-item Quality of Life Index designed to measure satis faction with various aspects of life and the subjective importance of each item to the individual. Satisfaction scores were adjusted by taking into account the impor tance value the individual placed on the item, the assumption being that ‘great dissatisfaction with an im
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Cassileth [9], in her discussion of why some patients resort to questionable or unorthodox cancer therapies, suggests that the toxicities involved in many cancer treatments may contribute to this phenomenon. In addi tion, concerns about quality of life may affect patient compliance with treatment regimens [10, 11], Measurement of quality of life has been proposed in order to facilitate patients’ and physicians’ choice of alternate but equivalent treatment regimens [12, 13], to compare the efficacy of standard versus experimental therapies [3, 9, 14], to determine the appropriateness of palliative treatment for patients with advanced cancer [15, 16], and as a part of the informed-consent process [17].
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portant area has a more negative impact on quality of life than great satisfaction with a very unimportant area’. Time frames for measurement are another issue. Skeel [30] states that ‘changing expectations over time can result in altered perceptions of quality of life in sim ilar circumstances’. Moinpour et al. [14] suggest that time intervals for assessment of quality of life be proto col and disease specific, dictated by disease progression, side effects of treatment, and protocol design. Minimal ly, the authors suggest that measurements be made prior to, during, and after treatment. In choosing or developing a quality of life instrument, Frank-Stromborg [31] outlines four choices the re searcher must make, depending on the goal of the research and the resources available: using single versus multiple instruments; using an instrument which yields qualitative versus quantitative data; using an observerrated versus a self-assessment instrument, and whether to measure objective versus subjective dimensions of quality of life.
Table 1. Characteristics of an adequate intrument for measuring the quality of life of cancer patients' 1 Appropriate underlying conceptualization of quality of life (a) (b)
Includes items from physical, psychological, spiritual, and social domains Includes items and response alternatives capable of reflecting positive aspects of quality of life
2 Tested for psychometric characteristics (a) (b) 3
Responsive to changes in quality of life (a) (b) (c)
4
Reliability Validity - construct, content, concurrent, predictive
Includes a reasonable number of items in the total test and at least five per domain Includes multiple-response alternatives Can provide subscale/domain scores
Based on patient-generated data (a) (b)
Used patients to generate initial items Uses self-report as completion technique
5 Acceptable to patients, health providers, and researchers
Researchers have developed and utilized a variety of different tools in an attempt to measure the concept of quality of life [2, 31].The major drawback to including quality of life assessments in clinical trials appears to be the lack of concensus in terms of which instrument to use. Obviously, the ideal tool would be easy to adminis ter and score, valid and reliable, and flexible across stud ies. Objective measures such as the Karnofsky Perfor mance Status Scale [32], although easily implemented and widely used, fail to take into account the individu al’s subjective experience and only assess physical func tioning. Subjects are rated by an observer on a scale of 0-100%, in 10-point increments. Grieco and Long [33] have stated that ‘the Karnofsky Scale is acceptably reli able and valid as a global measure, but it does not ade quately capture the conceptual domain of quality of life’. In contrast to Kamofsky’s unidimensional, observer rated assessment, Benner [34] argues for a holistic, phe nomenological approach to the study of quality of life, stressing the importance of examining the individual’s experience of illness within his or her social, cultural and emotional context. She advocates the use of such inter pretive strategies as paradigm cases, exemplars, and the-
(a) (b) (c) (d)
Short completion time Easy to administer and score - uses closed question format and categorical scaling Comprehensible to the majority of the population Items perceived as relevant by respondents
1 From Donovan et al. [2], Used with permission.
matic analysis gleaned from field notes, participant ob servations, and interviews. In this way, ‘the participant offers a depiction of the lived experience and the inter preter seeks commonalities in meanings, situations, practices, and bodily experiences’. The obvious impedi ment to this approach is that it is time consuming and does not yield quantitative data, although Benner’s point is well taken. Moinpour et al. [14] have made an extensive review of the literature on quality of life. They recommend mea suring three essential components: physical functioning, emotional functioning, and symptoms. They also suggest inclusion of a global quality of life assessment, and mea surement of social functioning, if feasible. The authors advocate using instruments specifically designed to mea sure each component separately, and recommend several existing instruments in each category in their review article.
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Measurement Tools
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Quality of Life
Urologic Malignancies and Quality of Life Cancer and its treatment may have deleterious physi cal and psychological effects on an individual. Body image changes, such as scars and ostomies, and func tional changes, such as impotence or incontinence, are often a result of urologic malignancies and/or treatment. Symptoms such as fatigue or pain may interfere with job or role performance. Interpersonal and sexual relation ships may be disrupted due to physiological and psycho logical disturbances. In recent years, there have been several advances in detection and treatment of urologic malignancies which have implications for improvement of quality of life in these patients. Tumor marker technology has facilitated earlier detection and treatment, risk assessment when weighing treatment options, and surveillance for recur rence in patients with testicular and prostate cancers. In addition, nerve-sparing surgeries have been developed in an attempt to preserve potency and fertility in many of these patients. Advances in hormonal therapy may im prove quality and length of survival in patients with advanced prostate cancer. Intravesical therapy may hold promise for treatment of patients with superficial blad der tumors, eliminating the need for repeated surgery. Continent urinary reservoirs have replaced external drainage procedures for many patients udergoing cystec tomy for bladder cancer. However, few studies utilizing these new modalities have incorporated quality of life measurements into their clinical trials [35]. The researcher may assume that a new treatment will improve a patient’s quality of life, but this may not necessarily be the case, as was demon strated by Sugarbaker et al. [36] in their randomized study of limb-sparing surgery versus amputation for pa tients with soft-tissue sarcoma. Data analysis revealed no statistically significant differences between the groups, although the amputees, surprisingly, scored bet ter than the limb-spared group on several parameters. The researchers concluded that, contrary to their hy
pothesis, limb-sparing surgery did not improve the qual ity of life of these patients. This data led to further inves tigations which eventually resulted in improved treat ment options for these patients. One recent attempt to explore quality of life issues in patients with advanced bladder cancer was a retro spective study by Boyd et al. [37], The investigators com pared two patient groups who had undergone radical cys tectomy for advanced bladder cancer. One group (n = 87) had had ileal conduits for urinary diversion. The other group had had continent ileal reservoirs (n = 85). Psycho logical, physical, social and sexual aspects of quality of life were assessed. Results revealed statistically signifi cant (p < 0.001) differences between the groups with respect to sexual activity, which was markedly decreased in the ileal conduit group. Patients who subsequently underwent conversion of ileal conduits to Kock pouches were the most sexually active (70%), as compared to the ileal conduit group (22%) and the primary Kock pouch group (48%). To the investigators’ surprise, however, there were no statistically significant differences in the other areas of quality of life assessed. The authors con cluded that the key to patient adaptation and acceptance was adequate preoperative education rather than the type of diversion used. Another recent study [38] compared quality of life among patients with early and advanced-stage testicular cancer. Patients (n = 31) were stratified according to treatment group: orchiectomy + chemotherapy (n = 13); orchiectomy + chemotherapy + lymphadenectomy (n = 7); orchiectomy + lymphadenectomy (n = 6); and or chiectomy + radiation therapy (n = 5). Eleven of 13 patients who underwent lymphadenectomy experienced loss of ejaculation at 3 and 6 months. Results of their preliminary report at 6 months after the start of treat ment (after orchiectomy) revealed that the orchiectomy + chemotherapy + lymphadenectomy group scored low est on quality of life measures. The authors attributed this result to the patients’ loss of antegrade ejaculation in combination with the side effects of chemotherapy. The implications for nerve-sparing procedures that preserve antegrade ejaculation and the need for patient support services, counseling and education are clear.
Conclusion It is apparent from this discussion that the state-ofthe-art quality of life instrument is yet to be agreed upon or developed. Attempts are currently underway to incor
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Donovan et al. [2] reviewed seventeen quality of life instruments. They described five characteristics of an adequate quality of life measure and rated each of the seventeen tools on these criteria. Since none of the instruments assessed were deemed entirely adequate, the authors stressed the need for development of new tools specific to cancer patients based on their criteria (ta ble 1).
Breslin
porate quality of life measures into several large-scale prostate cancer clinical trials [14] Hopefully, the infor mation obtained from these studies will facilitate incor poration of quality of life assessments into future proto cols. Traditionally, researchers have focused on response rate and survival in determining the efficacy of various cancer treatments. However, as Schipper et al. [17] point out, ‘It is entirely possible for medical parameters in a particular patient to indicate a most successful treatment while in fact the patient has been reduced to total socie tal debility by virtue of psychologic, somatic, or social interactional factors that may be the result of either the disease or its treatment’. As survival is prolonged by advances in cancer thera py, it is important for patients to be given the opportu nity to evaluate the quality of that survival in weighing treatment options. Developing strategies to improve methods of cancer treatment while preserving quality of life are clearly indicated. Cancer treatment which ex tends quantity while preserving quality of life is the man date of care for the future.
Acknowledgments Grateful acknowledgment is given to Dr. Peter Carroll and Dr. Carol Moinpour for their comments and suggestions in the prepara tion of the manuscript.
References 1 Boring CC, Squires TS, Tong T: Cancer Statistics, 1991. Ca-A Cancer Journal for Clinicians 1991;41:19-36. 2 Donovan K, Sanson-Fisher RW, Redman S: Measuring quality of life in cancer patients. J Clin Oncol 1989;7:959-968. 3 Celia DF, Cherin EA: Quality of life during and after cancer treatment. Com prTher 1988;14:69-75. 4 Foltz AT: The influence of cancer on self-concept and life qual ity. Semin Oncol Nurs 1987;3:303-312. 5 Padilla GV, Presant C, Grant MM, et al: Quality of life index or patients with cancer. Res Nurs Health 1983;6:117-126. 6 Germino B, Dalton J: Quality of life during radiation therapy (abstract). Oncol Nurs Forum 1986;13(suppl):97. 7 Young KJ, Longman AJ: Quality of life and persons with mela noma: A pilot study. Cancer Nurs 1983;6:219-225. 8 Graham K, Longman A: Quality of life and persons with mela noma. Cancer Nurs 1987;10:338-346. 9 Cassileth BR: The social implications of questionable cancer therapies. Cancer 1989;63:1247-1250. 10 Ochs J, Mulhern R, Kun L: Quality-of-life assessment in cancer patients. Am J Clin Oncol 1988; 11:415-421.
11 Richardson JL, Marks G, Levine A: The influence of symptoms of disease and side effects of treatment on compliance with can cer therapy. J Clin Oncol 1988;6:1746-1752. 12 Germino BB: Symptoms distress and quality of life. Semin Oncol Nurs 1987;3:299-302. 13 Selby P, Robertson B: Measurement of quality of life in patients with cancer. Cancer Surv 1987;6:521-543. 14 Moinpour CM, Feigl P, Metch B, et al: Quality of life endpoints in cancer clinical trials: Review and recommendations. J Natl Cancer Inst 1989;81:485-495. 15 Gough IR, Furnival CM, Schilder L, et al: Assessment of quality of life of patients with advanced cancer. Eur J Cancer Clin Oncol 1983;19:1161-1165. 16 Smart CR, Yates JW: Quality of life. Cancer 1987;60(suppl): 620-622. 17 Schipper H, Clinch J, McMurray A, et al: Measuring the quality of life of cancer patients: The functional Living Index-Cancer: Development and validation. J Clin Oncol 1984;2:472-483. 18 Bayles MD: The value of life - By what standard? Am J Nurs 1980;80:2226-2230. 19 Holmes S, Dickerson J: The quality of life: Design and evalua tion of a self-assessment instrument for use with cancer patients. Int J Nurs Stud 1987;24:15-24. 20 Aaronson NK: Quality of life: What is it? How should it be measured? Oncology 1988;2:69-74. 21 Welch-McCaffrey D: Cancer, anxiety, and quality of life. Cancer Nurs 1985;8:151-158. 22 Padilla GV, Grant MM: Quality of life as a cancer nursing out come variable. Adv Nurs Sci 1985;8:45-60. 23 Caiman KC: Definitions and dimensions of quality of life; in Aaronson NK, Beckmann JH (eds): The Quality of Life of Can cer Patients. New York, Raven Press, 1989, pp 1-9. 24 Sartorius N: Cross-cultural comparisons of data about quality of life: A sample of issues; in Aaronson NK, Beckmann JH (eds): The Quality of Life of Cancer Patients. New York, Raven Press, 1989, pp 19-24. 25 Kleinman A: Culture, the quality of life and cancer pain: Anthro pological and cross-cultural perspectives; in Ventafridda V, et al (eds): Assessment of Quality of Life and Cancer Treatment. Amsterdam, Elsevier, 1986. 26 Slevin ML, Plant H, Lynch D, et al: Who should measure quality of life, the doctor or patient? Br J Cancer 1988;57:109-112. 27 Schag CC, Heinrich RL, Ganz PA: Karnofsky performance sta tus revisited: Reliability, validity and guidelines. J Clin Oncol 1984;2:187-193. 28 Dean H: Choosing multiple instruments to measure the quality of life. Oncol Nurs Forum 1985;12:96-100. 29 Ferrans CE, Powers MJ: Quality of life index: Development and psychometric properties. Adv Nurs Sci 1985;8:15-24. 30 Skeel RT: Quality of life assessment in cancer clinical trials - It’s time to catch up. J Natl Cancer Inst 1989;81:472-473. 31 Frank-Stromborg M: Selecting an instrument to measure quality of life. Oncol Nurs Forum 1984; 11:88-91. 32 Karnofsky D, Burchenal J: The clinical evaluation of chemother apeutic agents in cancer; in MacLeod CM (ed): Evaluation of Chemotherapeutic Agents. New York, Columbia Press, 1949, pp 191-205. 33 Grieco A, Long C: Investigation of the Karnofsky Performance Status as a measure of quality of life. Health Psychol 1984;3: 129-142.
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38 Tamburini M, Filiberti A, Barbieri A, et al: Psychosocial mea surement of testicular cancer therapy: Preliminary data of a pro spective study; in Ventafridda V, et al (eds): Assessment of Qual ity of Life and Cancer Treatment. Amsterdam, Elsevier, 1986, pp 167-173.
Sheila Breslin, R.N. B.S.N. Research Coordinator Department of Urology University of California Medical Center San Francisco, CA 94143-0738 (USA)
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34 Benner P: Quality of life: A phenomenological perspective on explanation, prediction, and understanding in nursing science. Adv Nurs Sci 1985;8:1-14. 35 Aaronson NK, Calais da Silva F, Yoshida O: Quality of life assessment in bladder cancer clinical trials: Conceptual, method ological and practical issues; in Denis L, et al (eds): Develop ments in Bladder Cancer. New York, Alan Liss, 1986, pp 149— 170. 36 Sugarbaker PH, Barofsky I, Rosenberg SA, et al: Quality of life assessment of patients in extremity sarcoma clinical trials. Sur gery 1982;91:17-23. 37 Boyd SD, Feinberg SM, Skinner DG, et al: Quality of life survey of urinary diversion patients: Comparison of ileal conduits ver sus continent Kock ileal reservoirs. J Urol 1987; 138:13861389.
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Urol Int 1991;46:246-251
Quality of Life: How Is It Measured and Defined? Sheila Breslin University of California Medical Center, Department of Urology, San Francisco, Calif., USA
Key Words. Qualitiy of life • Urologic neoplasms • Measurement tools • Oncology
Introduction Cancer is the second leading cause of death in the United States. It is estimated that over 1 million new cases of cancer will be diagnosed in 1991. Urologic malignancies are expected to account for approximately 32% of all cancer occurrences in men and for 4% in women. Mortality rates were estimated at 17 and 3%, respectively [1], With recent advances in early detection and treatment, long-term survival for cancer patients is approaching 50%. However, the quality of that survival has not been adequately assessed [2, 3], Some studies suggest that definitive treatment for various types of cancer may result in physical and/or psychological disability in 16-64% of patients for up to 5 years following treatment. In addition, treatment plans which employ more than one modality (e.g. chemother apy + radiation therapy) may increase the duration of
dysfunction. This may be due to cumulative toxicities and/or advanced stage of disease [4], One study comparing quality of life among cancer patients (inpatients receiving chemotherapy, outpatients receiving chemotherapy, and outpatients receiving ra diation therapy) and a nonpatient control group revealed that nonpatients had the best quality of life whereas che motherapy inpatients had the poorest. The authors con clude that these results reflect, in part, the toxicities asso ciated with treatment [5], Symptom distress as a result of disease or treatment has been shown to adversely affect life quality. A study of 36 lung cancer patients demonstrated a significant (p = 0.05) inverse relationship between symptom distress and quality of life during active treatment [6]. Similar results were obtained by Young and Longman [7] and Graham and Longman [8] in their studies of patients with melanoma.
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Abstract. Quality of life is an abstract concept which encompasses an individual’s perceived level of physical, psychological, and social well-being. It is a highly subjective phenomenon, mediated by one’s personal and cultural values and beliefs, self-concept, goals, and life experiences. Some studies have demonstrated that an individual’s quality of life may be influenced negatively by a diagnosis of cancer and/or the sequelae of treatment. Concerns about quality of life issues may affect a patient’s choice of treatment options or compliance with treatment regimens. Although there is no universally agreed-upon instrument to measure quality of life, researchers are increasingly utilizing multidimensional patient self-assessment tools in lieu of physician-rated performance status scales. Recent advances in detection and treatment may improve quality of life for patients with urologic malignancies. Cancer treatment which extends quantity while maintaining or improving quality of life is the mandate of care for the future.
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Quality of Life
Concept Definition What is meant by the concept ‘quality of life’? Ethicist Michael Bayles [18] argues that life is not intrinsically valuable but rather that consciousness of various charac teristics or qualities of life is what gives it its meaning. What then are the qualities that make life worth liv ing? Quality of life has been defined as ‘an abstract and complex term representing individual responses to the physical, mental and social factors which contribute to ‘normal’ daily living’ [19], Young and Longman [7] described it as ‘the degree of satisfaction with present life circumstances perceived by the person’. Aaronson [20] defined the concept from a health-related framework as ‘a multidimensional construct composed minimally of the following four domains: functional status, diseaserelated and treatment-related symptoms, psychological functioning, and social functioning’. Welch-McCaffrey [21] outlined three dimensions that affect quality of life of cancer patients: social factors, physiological factors, and psychological factors. Social factors include social dependence, life-style changes, time spent within the medical system, and ability to return to work. Physiological determinants include symptoms distress, performance level, freedom from pain, and sexual activity. Psychological variables include behavior and morale, freedom from stress, degree of happiness, degree of satisfaction, purpose of life, anxiety and self-esteem. The results of a study by Padilla and Grant [22], eval uating the impact of nursing interventions on cancer patients, validated Welch-McCaffrey’s observations. The investigators found that physical well-being, psycho
logical well-being, and symptom control were the three most important aspects of quality of life to this patient population.
Measurement Issues The concept of quality of life is a highly subjective phenomenon mediated by one’s personal and cultural values and beliefs, self-concept, goals, and life experi ences [23-25]. What is perceived as negative by one per son may be seen in an entirely different light by another, including the researcher. Studies have demonstrated that correlations between physicians’ ratings of patient qual ity of life and patients’ evaluations using a self-assess ment tool, although positive, were poor [5, 17, 26]. In addition, interrater reliability is reportedly low [27], The use of self-assessment tools is therefore more likely to reflect accurate data than observer-rated tools. Dean [28] advocates use of multiple instruments to measure this complex concept. This approach, she as serts, ‘allows flexibility in the conceptualization of qual ity of life while permitting comparability of specific dimensions across studies’. However, as she also points out, time constraints and potential confusion to patients must be considered when administering more than one instrument. Aaronson [20] argues for use of a disease-specific, treatment-specific self-assessment questionnaire that may be incorporated into a core health-related quality of life questionnaire. This approach addresses several im portant difficulties in measuring quality of life: the vari ance in symptoms and psychosocial sequelae by cancer site and treatment choice, comparisons of results across studies where different assessment tools have been uti lized, and the fact that the health care system can only impact health-related aspects of a patient’s quality of life. Other researchers stress the need to assess the impor tance of any alteration in quality of life from the individ ual’s perspective, pointing out that a change in body image or functional ability may be perceived and experi enced quite differently by one person than by another [3]. Accordingly, Ferrans and Powers [29] developed a 64-item Quality of Life Index designed to measure satis faction with various aspects of life and the subjective importance of each item to the individual. Satisfaction scores were adjusted by taking into account the impor tance value the individual placed on the item, the assumption being that ‘great dissatisfaction with an im
Downloaded by: Kings's College London 137.73.144.138 - 11/16/2017 9:58:07 AM
Cassileth [9], in her discussion of why some patients resort to questionable or unorthodox cancer therapies, suggests that the toxicities involved in many cancer treatments may contribute to this phenomenon. In addi tion, concerns about quality of life may affect patient compliance with treatment regimens [10, 11], Measurement of quality of life has been proposed in order to facilitate patients’ and physicians’ choice of alternate but equivalent treatment regimens [12, 13], to compare the efficacy of standard versus experimental therapies [3, 9, 14], to determine the appropriateness of palliative treatment for patients with advanced cancer [15, 16], and as a part of the informed-consent process [17].
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portant area has a more negative impact on quality of life than great satisfaction with a very unimportant area’. Time frames for measurement are another issue. Skeel [30] states that ‘changing expectations over time can result in altered perceptions of quality of life in sim ilar circumstances’. Moinpour et al. [14] suggest that time intervals for assessment of quality of life be proto col and disease specific, dictated by disease progression, side effects of treatment, and protocol design. Minimal ly, the authors suggest that measurements be made prior to, during, and after treatment. In choosing or developing a quality of life instrument, Frank-Stromborg [31] outlines four choices the re searcher must make, depending on the goal of the research and the resources available: using single versus multiple instruments; using an instrument which yields qualitative versus quantitative data; using an observerrated versus a self-assessment instrument, and whether to measure objective versus subjective dimensions of quality of life.
Table 1. Characteristics of an adequate intrument for measuring the quality of life of cancer patients' 1 Appropriate underlying conceptualization of quality of life (a) (b)
Includes items from physical, psychological, spiritual, and social domains Includes items and response alternatives capable of reflecting positive aspects of quality of life
2 Tested for psychometric characteristics (a) (b) 3
Responsive to changes in quality of life (a) (b) (c)
4
Reliability Validity - construct, content, concurrent, predictive
Includes a reasonable number of items in the total test and at least five per domain Includes multiple-response alternatives Can provide subscale/domain scores
Based on patient-generated data (a) (b)
Used patients to generate initial items Uses self-report as completion technique
5 Acceptable to patients, health providers, and researchers
Researchers have developed and utilized a variety of different tools in an attempt to measure the concept of quality of life [2, 31].The major drawback to including quality of life assessments in clinical trials appears to be the lack of concensus in terms of which instrument to use. Obviously, the ideal tool would be easy to adminis ter and score, valid and reliable, and flexible across stud ies. Objective measures such as the Karnofsky Perfor mance Status Scale [32], although easily implemented and widely used, fail to take into account the individu al’s subjective experience and only assess physical func tioning. Subjects are rated by an observer on a scale of 0-100%, in 10-point increments. Grieco and Long [33] have stated that ‘the Karnofsky Scale is acceptably reli able and valid as a global measure, but it does not ade quately capture the conceptual domain of quality of life’. In contrast to Kamofsky’s unidimensional, observer rated assessment, Benner [34] argues for a holistic, phe nomenological approach to the study of quality of life, stressing the importance of examining the individual’s experience of illness within his or her social, cultural and emotional context. She advocates the use of such inter pretive strategies as paradigm cases, exemplars, and the-
(a) (b) (c) (d)
Short completion time Easy to administer and score - uses closed question format and categorical scaling Comprehensible to the majority of the population Items perceived as relevant by respondents
1 From Donovan et al. [2], Used with permission.
matic analysis gleaned from field notes, participant ob servations, and interviews. In this way, ‘the participant offers a depiction of the lived experience and the inter preter seeks commonalities in meanings, situations, practices, and bodily experiences’. The obvious impedi ment to this approach is that it is time consuming and does not yield quantitative data, although Benner’s point is well taken. Moinpour et al. [14] have made an extensive review of the literature on quality of life. They recommend mea suring three essential components: physical functioning, emotional functioning, and symptoms. They also suggest inclusion of a global quality of life assessment, and mea surement of social functioning, if feasible. The authors advocate using instruments specifically designed to mea sure each component separately, and recommend several existing instruments in each category in their review article.
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Measurement Tools
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Urologic Malignancies and Quality of Life Cancer and its treatment may have deleterious physi cal and psychological effects on an individual. Body image changes, such as scars and ostomies, and func tional changes, such as impotence or incontinence, are often a result of urologic malignancies and/or treatment. Symptoms such as fatigue or pain may interfere with job or role performance. Interpersonal and sexual relation ships may be disrupted due to physiological and psycho logical disturbances. In recent years, there have been several advances in detection and treatment of urologic malignancies which have implications for improvement of quality of life in these patients. Tumor marker technology has facilitated earlier detection and treatment, risk assessment when weighing treatment options, and surveillance for recur rence in patients with testicular and prostate cancers. In addition, nerve-sparing surgeries have been developed in an attempt to preserve potency and fertility in many of these patients. Advances in hormonal therapy may im prove quality and length of survival in patients with advanced prostate cancer. Intravesical therapy may hold promise for treatment of patients with superficial blad der tumors, eliminating the need for repeated surgery. Continent urinary reservoirs have replaced external drainage procedures for many patients udergoing cystec tomy for bladder cancer. However, few studies utilizing these new modalities have incorporated quality of life measurements into their clinical trials [35]. The researcher may assume that a new treatment will improve a patient’s quality of life, but this may not necessarily be the case, as was demon strated by Sugarbaker et al. [36] in their randomized study of limb-sparing surgery versus amputation for pa tients with soft-tissue sarcoma. Data analysis revealed no statistically significant differences between the groups, although the amputees, surprisingly, scored bet ter than the limb-spared group on several parameters. The researchers concluded that, contrary to their hy
pothesis, limb-sparing surgery did not improve the qual ity of life of these patients. This data led to further inves tigations which eventually resulted in improved treat ment options for these patients. One recent attempt to explore quality of life issues in patients with advanced bladder cancer was a retro spective study by Boyd et al. [37], The investigators com pared two patient groups who had undergone radical cys tectomy for advanced bladder cancer. One group (n = 87) had had ileal conduits for urinary diversion. The other group had had continent ileal reservoirs (n = 85). Psycho logical, physical, social and sexual aspects of quality of life were assessed. Results revealed statistically signifi cant (p < 0.001) differences between the groups with respect to sexual activity, which was markedly decreased in the ileal conduit group. Patients who subsequently underwent conversion of ileal conduits to Kock pouches were the most sexually active (70%), as compared to the ileal conduit group (22%) and the primary Kock pouch group (48%). To the investigators’ surprise, however, there were no statistically significant differences in the other areas of quality of life assessed. The authors con cluded that the key to patient adaptation and acceptance was adequate preoperative education rather than the type of diversion used. Another recent study [38] compared quality of life among patients with early and advanced-stage testicular cancer. Patients (n = 31) were stratified according to treatment group: orchiectomy + chemotherapy (n = 13); orchiectomy + chemotherapy + lymphadenectomy (n = 7); orchiectomy + lymphadenectomy (n = 6); and or chiectomy + radiation therapy (n = 5). Eleven of 13 patients who underwent lymphadenectomy experienced loss of ejaculation at 3 and 6 months. Results of their preliminary report at 6 months after the start of treat ment (after orchiectomy) revealed that the orchiectomy + chemotherapy + lymphadenectomy group scored low est on quality of life measures. The authors attributed this result to the patients’ loss of antegrade ejaculation in combination with the side effects of chemotherapy. The implications for nerve-sparing procedures that preserve antegrade ejaculation and the need for patient support services, counseling and education are clear.
Conclusion It is apparent from this discussion that the state-ofthe-art quality of life instrument is yet to be agreed upon or developed. Attempts are currently underway to incor
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Donovan et al. [2] reviewed seventeen quality of life instruments. They described five characteristics of an adequate quality of life measure and rated each of the seventeen tools on these criteria. Since none of the instruments assessed were deemed entirely adequate, the authors stressed the need for development of new tools specific to cancer patients based on their criteria (ta ble 1).
Breslin
porate quality of life measures into several large-scale prostate cancer clinical trials [14] Hopefully, the infor mation obtained from these studies will facilitate incor poration of quality of life assessments into future proto cols. Traditionally, researchers have focused on response rate and survival in determining the efficacy of various cancer treatments. However, as Schipper et al. [17] point out, ‘It is entirely possible for medical parameters in a particular patient to indicate a most successful treatment while in fact the patient has been reduced to total socie tal debility by virtue of psychologic, somatic, or social interactional factors that may be the result of either the disease or its treatment’. As survival is prolonged by advances in cancer thera py, it is important for patients to be given the opportu nity to evaluate the quality of that survival in weighing treatment options. Developing strategies to improve methods of cancer treatment while preserving quality of life are clearly indicated. Cancer treatment which ex tends quantity while preserving quality of life is the man date of care for the future.
Acknowledgments Grateful acknowledgment is given to Dr. Peter Carroll and Dr. Carol Moinpour for their comments and suggestions in the prepara tion of the manuscript.
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Sheila Breslin, R.N. B.S.N. Research Coordinator Department of Urology University of California Medical Center San Francisco, CA 94143-0738 (USA)
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