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Quality of Life in Breast Cancer Patients—Not Enough Attention for Long-Term Survivors?
Quality of Life in Breast Cancer Patients—Not Enough Attention for Long-Term Survivors? BERNHARD HOLZNER, PH.D., GEORG KEMMLER, PH.D. MARTIN KOPP, PH.D., ROLAND MOSCHEN, PH.D. HANSJO¨RD SCHWEIGKOFLER, PH.D., MARTINA DU¨NSER, M.D. RAIMUND MARGREITER, M.D., W. WOLFGANG FLEISCHHACKER, M.D. BARBARA SPERNER-UNTERWEGER, M.D.
In a study of breast cancer survivors, the authors used the European Organization for Research and Treatment of Cancer core questionnaire Ⳮ breast module (EORTC QLQ-C30/ⳭBR23) and the Functional Assessment of Cancer Therapy—Breast (FACT-B)for the assessment of quality of life (QoL). The main focus of this study was to look at the effect of time elapsed since initial treatment on the patients’ QoL. Eighty-seven female patients (average age of 53.9Ⳳ8.7 years) were included in the study. All women had received curative cancer therapy. The average time elapsed since start of initial treatment was 4.7Ⳳ4.3 years. Reduced QoL, especially in the areas of emotional, social, and sexual functioning, was found not only after initial treatment (1–2 years) but also after long posttreatment survival (⬎5 years).From these findings, needs for specific psycho-oncological interventions are derived. The findings imply that besides recovering from the acute consequences of cancer therapy, long-term survivors of breast cancer (⬎5 years after initial treatment) still may have a special need for psycho-oncological support. (Psychosomatics 2001; 42:117–123)
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omen with breast cancer represent the largest population of cancer survivors. High rates of curative treatment for localized disease and long-term overall survival are reported in these patients.1 It can therefore be argued that in this patient group research should not focus solely on the immediate effects of treatment, disease-free intervals, and survival rates. Another important aspect in this context is a differentiated knowledge of the long-term perspectives regarding levels of effective functioning2 and subjective well-being. A key issue in this context is the patient’s quality of life (QoL). In previous breast cancer studies, QoL served primarily as a means of evaluating somatic treatment concepts, for instance, when comparing different operative techniques—breast-conservation versus mastectomy,3,4 or different chemo- and radiotherapeutic regimens.5 These studPsychosomatics 42:2, March-April 2001
ies, in which QoL assessment was an “add on” to the clinical protocol, were primarily concerned with the shortterm effects of the therapies employed. However, as breast cancer patients enjoy long survival periods today, future studies should include QoL issues (i.e., functional aspects and life satisfaction as a main focus). There are only a few studies of breast cancer survivors dealing with the long-term adaptation beyond the first year of diagnosis. According to Ganz et al.,6 maximum physical Received April 27, 2000; revised September 7, 2000; accepted November 27, 2000. From the Departments of Biological Psychiatry, General Psychiatry, and Surgery at Innsbruck University Hospital, Innsbruck, Austria; and the Department of Psychiatry at General Hospital Brixen. Address correspondence and reprint requests to Dr. Holzner, Innsbruck University Hospital, Department of Psychiatry, Anichstr. 35, A–6020 Innsbruck, Austria. Copyright 䉷 2001 The Academy of Psychosomatic Medicine.
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Quality of Life in Breast Cancer Patients and psychological recovery was achieved 1 year after initial treatment in a cohort of 139 patients. In the following 2 years, however, there was a deterioration of QoL in many areas, such as physical and recreational activities, body image, sexual interest, and sexual functioning. In a similar study, Dow et al.7 identified a number of problems that persisted long after initial treatment. Among these problems were physical problems such as pain and fatigue; psychological problems, such as fear of recurrence; and an inability to cope with the disease and its treatment, as well as psychosocial problems such as family worries and sexual problems. In Dow et al.’s study, attention was drawn to the need to provide education, information, and support over time. Although breast cancer patients may not show obvious signs of disease, they do appear to suffer from restrictions in their QoL, possibly indicating problems with long-term adaption. A broad range of QoL instruments have been used in clinical trials among breast cancer patients in oncology,8 including the Functional Living Index-Cancer (FLIC),9 the Rotterdam Symptom Checklist (RSCL),10 and the Cancer Rehabilitation Evaluation System-Short Form (CARESSF).11 However, there are only a few QoL questionnaires that have been devised specifically for breast cancer patients. These include the Breast Cancer Chemotherapy Questionnaire (BCQ),12 the Functional Assessment of Cancer Therapy—Breast (FACT-B),2 and the European Organization for Research and Treatment of Cancer core questionnaire and breast module (EORTC QLQ-C30/ ⳭBR23).8 While the BCQ is intended to be applicable to stage II breast cancer patients undergoing chemotherapy, the FACT-B, like the EORTC QLQ-C30/ⳭBR23, was designed for use among breast cancer patients in a wide range of disease stages, undergoing different treatments to detect clinically meaningful changes in QoL over time. Both the FACT-B and the EORTC QLQ-C30/ⳭBR23 pursue a promising concept, namely the combination of a generic core questionnaire and site specific modules. For these two instruments both the core questionnaire and the breast modules have been internationally validated.2,8 In the following, we report on a cross-sectional study investigating the QoL of long-term breast cancer survivors using the EORTC QLQ-C30/BR23 and FACT-B, focusing on the question of whether time elapsed since initial treatment affects QoL. Based on the findings, appropriate medical and psycho-oncological measures that improve the QoL of breast cancer survivors will be discussed. 118
METHODS Sample For this study, we recruited patients with a diagnosis of breast cancer who had attended the outpatient unit of the department of surgery at the University of Innsbruck between February and October 1997. All women had a diagnosis of localized or locoregional breast cancer and had received curative therapy. All patients were initially treated between 1980 and 1996. During this period of time, the treatment modalities in our setting remained basically the same. This applies also for the scheme of the medical aftercare: regular visits took place at 3-month intervals during the first 2 years after initial treatment, semianually for 2–5 years after initial treatment and annually for more than 5 years after initial treatment. Only relapse-free patients whose initial treatment had taken place at least 1 year before this study were included. Exclusion criteria were the presence of other severe diseases at the time of the study. To address the main focus of this study, we divided patients into the following three groups according to the time elapsed since initial treatment: Group I: 1–2 years; Group II: 2–5 years; and Group III: more than 5 years. This division was based on the different schemes employed in the follow-up care of patients and established knowledge about the course of the disease. In Group I, the consequences of treatment, which often persist for several months, are still very much in evidence. Group II patients do not suffer any longer from impairments directly associated with treatment; but close monitoring at 6-month intervals is, nonetheless, necessary. Group III comprises patients regarded as “cured” from a medical point of view; follow-up visit are carried out on a yearly basis with this group of patients. QoL Assessment, EORTC QLQ-C30/ⳭBR23, FACT-B QoL was assessed using two different instruments, the EORTC QLQ-C30, including the breast cancer module BR23,8 and the FACT-B,2 consisting of both a generic part (FACT-G) and a breast cancer specific module. They have been shown to have good validity and reliability properties both for the English original and the translations into various languages including German.13 Detailed descriptions of both inventories can be found elsewhere.14–21 The instruments are similar with respect to their length, type of response scale, time frame, and, to a somePsychosomatics 42:2, March-April 2001
Holzner et al. what lesser extent, their subscale structure. Both instruments have subscales measuring physical, emotional, functional, and social aspects. In addition, the EORTC QLQ-C30 has additional subscales assessing cognitive functions, symptomatology, and financial impact of the disease. It has recently been shown that despite similar nomenclature the two core instruments emphasize somewhat different aspects of QoL. The EORTC QLQ-C30 concentrates largely on physical functioning and clinical symptoms, whereas the FACT-G has a stronger focus on social and emotional aspects.22 For this reason, we used both instruments. Statistical Methods For comparison of sociodemographic and clinical data in the three groups (1–2 years, 2–5 years, and ⬎5 years since initial treatment) the Kruskal-Wallis test was employed for continuous and ordinally scaled variables and the chi-square test in the case of dichotomous variables. Analyses of covariance (ANCOVA) were performed for comparing the three groups regarding QoL subscales. We included the following covariates: age, marital status (married/with partner vs. all other categories), education, type of surgery (breast conserving vs. mastectomy), previous chemotherapy, extent of disease (local vs. locoregional). The P-values for pairwise group comparisons are based on F tests for linear contrasts (adjusting for all above-mentioned covariates). RESULTS Sample Characteristics A total of 103 breast cancer patients in outpatient follow-up consented to complete the data sheets and the QoL inventories. Six patients (4.8%) failed to complete the questionnaires (reasons given were mostly lack of time). Ten others failed to meet inclusion criteria, as they were suffering from other diseases at the time of investigation. Thus, there remained 87 patients who were eligible for statistical analysis [30 in Group I (1–2 years after initial treatment; meanⳲSD⳱1.5Ⳳ 0.5) 28 in Group II (2–5 years after initial treatment; meanⳲSD⳱3.4Ⳳ 0.8) and 29 in Group III (⬎5 years after initial treatment; meanⳲSD⳱10.4Ⳳ4.2)]. Table 1 presents an overview of the demographic and clinical data. Patients in Group III were slightly, but not Psychosomatics 42:2, March-April 2001
significantly, older than those of the two other groups. No significant differences among the three groups were observed for any of the other variables. In particular, groups did not differ from each other in terms of treatment. The mean functioning level for all three groups as rated by the Karnovsky Index was close to the maximum of 100. QoL Assessment Results of the QoL subscales in the three groups are summarized in Table 2 (EORTC QLQ-C30/Ⳮ BR23) and Table 3 (FACT-B). Patients with a survival duration of at least 5 years since initial treatment (Group III) exhibited significantly more restrictions in global QoL than the other two groups of patients (P⬍0.05). The same pattern can be observed for the subscale “role functioning.” Long after successful treatment, patients apparently still experienced difficulties in occupational tasks and felt handicapped in organizing their leisure time activities and pursuing their hobbies. Similarly, Group III showed more impairments (P⬍0.05) regarding sexual functioning and enjoyment than the two other groups. Group II (2–5 years), in comparison to Group I and III (1–2 years and ⬎5 years), showed significant values (P⬍0.01) in the area of emotional functioning (e.g., tension, depression and worries). Significantly less impairments were also seen in the area of cognitive functioning (memory and concentration) in Group II. No significant differences among the three groups could be established regarding the EORTC-symptom subscales. Fatigue, sleep disturbances, and pain were reported most frequently across groups. Similarly to the results of the EORTC QLQ-C30/ ⳭBR23, the FACT-B showed higher values in Group II (2– 5 years) than in the other two groups in almost all domains (Table 3). In particular, this pattern was found in the emotional well-being (e.g., existential worries and depression), social well-being (e.g., social support and social integration), and breast (e.g., sexual attractiveness) subscales. DISCUSSION As the majority of breast cancer patients can be treated with a curative intent and therefore live for extended periods of time, assessment of their long-term QoL is important for several reasons.23 First, identifying specific late psychosocial sequelae of breast cancer may help clinicians target 119
Quality of Life in Breast Cancer Patients possible late effects that need special attention in patients’ follow-up care. Second, information on long-term QoL may help health care planners determine those patient services that should be maintained or ones that should be developed.
TABLE 1.
Sociodemographic and clinical data for the time elapsed since start of initial treatment 1–2 Years nⴔ30
2–5 Years nⴔ28
⬎5 Years nⴔ29
MeanⳲSD Range Single Married/with partner Divorced Widowed Elementary school Compl. Apprenticeship A-level, university Local Locoregional Breast conserving Mastectomy Yes No Yes No
52.9Ⳳ8.3 32–68 25% 62.5% 9.4% 3.1% 46.9% 34.4% 18.8% 66.7% 33.3% 39.0% 61.0% 23.1% 61.0% 31.2% 68.8%
52.5Ⳳ8.5 30–70 3.7% 85.2% 3.7% 7.4% 48.1% 44.4% 7.4% 75.0% 25.0% 41.2% 58.8% 37.0% 58.8% 33.3% 66.7%
55.1Ⳳ8.8 37–70 13.0% 65.2% 4.3% 17.4% 43.5% 52.2% 4.3% 79.3% 20.7% 39.4% 60.6% 17.45 60.6% 56.5% 43.5%
Yes No Yes No At the moment MeanⳲSD Range
15.6% 84.4% 12.5% 75.0% 12.5% 98.8Ⳳ5.5 70–100
7.4% 92.6% 7.4% 88.9% 3.7% 98.9Ⳳ3.2 90–100
13.0% 87.0% 4.3% 95.75 0.0% 99.6Ⳳ2.1 90–100
Number of patients Age Marital status
Education
Extent of disease Surgery Chemotherapy Radiotherapy Combined therapy Hormonal therapy
Karnofsky Index
TABLE 2.
The present study is aimed at investigating the extent to which QoL of breast cancer survivors depends on the time elapsed since initial treatment and in obtaining a rationale for effective psycho-oncological aftercare. In order to operationalize this, comparisons were made among three
The European Organization for Research and Treatment of Cancer core questionnaire and the breast module (EORTC QLQC30/ⴐBR23) functioning scales for the time elapsed since start of initial treatment Group I 1–2 Years MeanⴣSD
Group II 2–5 Years MeanⴣSD
Group III ⬎5 Years MeanⴣSD
I vs. III
P-Valuesb I vs. II
II vs. III
89.8Ⳳ14.5 88.9Ⳳ17.1 91.7Ⳳ12.2 69.4Ⳳ22.4 86.7Ⳳ1 73.5Ⳳ22.2
92.4Ⳳ7.0 89.3Ⳳ16.5 93.4Ⳳ9.5 85.2Ⳳ15.0 97.0Ⳳ 78.8Ⳳ20.5
87.4Ⳳ15.3 85.6Ⳳ21.2 76.4Ⳳ30.6 67.8Ⳳ25.6 80.5Ⳳ8 61.7Ⳳ31.3
NS NS 0.020 NS NS 0.022
NS NS NS 0.0017 NS NS
NS NS 0.009 0.002 0.005 0.003
75.3Ⳳ29.8 37.2Ⳳ29.9 66.7Ⳳ28.0 54.4Ⳳ28.3
79.8Ⳳ27.3 51.2Ⳳ29.2 71.7Ⳳ22.4 53.6Ⳳ36.7
84.5Ⳳ20.1 28.7Ⳳ27.4 48.9Ⳳ27.8 60.9Ⳳ32.2
NS (0.10) 0.037 NS
NS NS NS NS
NS 0.027 0.010 NS
a
EORTC QLQ-C30 Physical functioning Social functioning Role functioning Emotional functioning Cognitive functioning Global quality of life EORTC QLQ-BR23a Body image Sexual functioning Sexual enjoyment Future perspective
Note: aHigher scores indicate better quality of life. b Analysis of covariance: adjustment for age, marital status, education, surgery, previous chemotherapy, and extent of disease.
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Holzner et al. groups of breast cancer survivors according to time elapsed since initial treatment (Group I: 1–2 years; Group II: 2–5 years; and Group III: ⬎5 years). It should be noted that due to the cross-sectional design of the study, changes in QoL over time could only be determined indirectly. However, as has been indicated by Sprangers and Schwartz,24,25 even a longitudinal design does not necessarily guarantee an unbiased assessment of changes in QoL in the course of time, as due to a response shift a systematic error may occur. For the same reason we refrained from a comparison of the patients’ QoL scores with that of a “normative” general population. The results of our study are somewhat unexpected. Restrictions in QoL were reported not only by patients in the first 2 years after initial treatment but also by patients with a survival time of more than 5 years who had been considered cured from a medical point of view. Patients with intermediate remission periods (2–5 years since initial treatment) enjoyed the highest QoL, similar to that of healthy women.26 The reasons for this distinct pattern of QoL will now be discussed in greater detail. In the early phase after initial treatment (1–2 years), patients have a clearly reduced QoL in many areas. This is especially true for the emotional and social domains. With regard to the emotional domain, clinical experience shows that fear about possible relapse and associated depressive reactions play an important role in the process of coping with the illness and its treatment. Similar observations were also made by Dow et al.7 Restrictions in the social domain may be due to illness-related changes in social roles. The majority of the women were housewives, having been responsible for the organization of households. Adapting to the much more passive patient role most likely has deprived these women of important role functions in the family setting. TABLE 3.
A further area of marked problems in the early posttreatment phase is sexuality. The reasons for this are obvious, but complex, and include both psycholgical factors, such as feelings of lacking physical attractiveness after breast surgery, and somatic factors, such as vaginal dryness, resulting from chemotherapy-induced menopause or from hormonal therapy. From about the third year after initial treatment the breast cancer survivors in our study enjoyed a high QoL in most domains of life, compared with the first 2 years. Presumably, at this point of time, the patients have managed to overcome, to a large extent, the physical and psychological burdens imposed by the illness and its treatment and have adapted to their new situation. Surprisingly, restrictions in QoL reappear in long-term relapse-free patients (⬎5 years posttreatment) and in some cases are even more pronounced than in the initial phase after treatment. The areas of life affected are those of emotional and role functions, social well-being, cognitive functions, and sexuality. This pattern cannot be observed for physical symptoms (e.g., pain, fatigue, constipation, and dyspnea), which occurred in the same extent across all groups. The reappearance of emotional problems in patients in long-term remission may be because of a variety of reasons. Although the patients have learned to cope with the somatic concerns of the disease and its treatment, the focus may shift to psychological issues. While the patients still have to contend with the necessity of regular after care visits and chronic physical long term effects of cancer treatment, such as arm swelling or scar pain, which make them continually aware of the illness they have survived and have created possible distress and anxiety regarding a possible relapse. The patients’ social support network might
Functional Assessment of Cancer Therapy-Breast (FACT-B) subscales for the time elapsed since start of initial treatment
FACT-B Subscales Physical well-being Emotional well-being Functional well-being Social well-being Breast Modul Total (FACT-G)
Group I 1–2 Years
Group II 2–5 Years
Group III ⬎5 Years
MeanⴣSD
MeanⴣSD
MeanⴣSD
I vs. III
I vs. II
II vs. III
25.0Ⳳ3.9 18.7Ⳳ3.7 21.1Ⳳ6.4 17.5Ⳳ6.1 24.4Ⳳ6.1 82.3Ⳳ14.5
26.4Ⳳ2.6 20.5Ⳳ2.7 23.4Ⳳ3.3 20.4Ⳳ3.4 27.8Ⳳ4.0 91.1Ⳳ9.2
24.3Ⳳ5.6 18.0Ⳳ4.3 20.9Ⳳ5.1 17.4Ⳳ5.1 24.4Ⳳ6.4 80.3Ⳳ15.1
NS NS NS NS NS NS
NS (0.058) NS 0.025 0.050 0.034
NS 0.002 NS 0.037 0.026 0.015
P-Valuesb
Note: aHigher scores indicate better quality of life. b Analysis of covariance: adjustment for age, marital status, education, surgery, previous chemotherapy, and extent of disease.
Psychosomatics 42:2, March-April 2001
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Quality of Life in Breast Cancer Patients show a diminishing understanding of the psychological and physical problems just described and may be less inclined to offer the support needed. This may also hold true for the care team, who consider the patients cured and pays less attention to the patients’ emotional situation. A similar explanation might apply to the reported impairments in sexual life. Five years after treatment, the initial understanding by the partner is possibly exhausted. As the illness- and treatment-related impairments continue to have adverse effects on sexual functions, originally compensated problems may surface, especially if not dealt with adequately earlier. Impairments reported in role functioning might be similarly explained in that support initially offered in occupational and household activities may tend to disappear with time. The “rebound effect” observed in this study (a recurring reduction of QoL after initial improvement) was most pronounced, as mentioned earlier, in the areas of emotional functioning, role functioning, social well-being, and sexual life. Ganz et al.6 report similar results, indicating that a whole series of psychosocial and sexual problems not only continue to plague breast cancer patients, but might also worsen with time.
In terms of psycho-oncological care this means that patients should be offered appropriate support not only during their hospital stay and when they are receiving chemoor radiotherapy but also after remission and completion of therapy.7,27,28 Such help should encompass the whole spectrum of psycho-oncological therapy, extending from supportive conversations to specific psychotherapeutic interventions.29,30 Within the framework of long-term aftercare, special attention will need to be paid to problems in the area of sexuality. In conclusion, our study has identified a need for further development of psycho-oncological concepts to take into account the rebound effect in QoL described above.31 The objective must be the integration of psycho-oncological support into the somatic treatment to ensure comprehensive care for breast cancer survivors. A first step toward this aim has now been taken at Innsbruck University Hospital (Division of Psycho-oncology). On the basis of the present findings, we have established a special psycho-oncological program for the long-term support of this group of patients.
References
1. Boring CC, Squires TS, Tong T, et al: Cancer statistics. Cancer J Clin 1994; 44:7–26 2. Brady MJ, Cella DF, Mo F, et al: Reliability and validity of the Functional Assessment of Cancer Therapy-Breast quality-of-life instrument. J Clin Oncol 1997; 15:974–86 3. Kiebert GM, de Haes JC, van de Velde CJ: The impact of breastconserving treatment and mastectomy on the quality of life of early stage breast cancer patients: a review. J Clin Oncol 1991; 6:1059–1070 4. Gilbar O, Ungar L, Fried G, et al: Living with mastectomy and breast conservation treatment: who suffers more? Support Care Cancer 1997; 5:322–6 5. Ramirez AJ, Towlson KE, Leaning MS, et al: Do patients with advanced breast cancer benefit from chemotherapy? Br J Cancer 1998; 78:1488–94 6. Ganz PA, Coscarelli A, Fred C, et al: Breast cancer survivors: psychosocial concerns and quality of life. Breast Cancer Res Treat 1996; 38:183–99 7. Dow KH, Ferell BR, Leigh S, et al: An evaluation of the quality of life among long-term survivors of breast cancer. Breast Cancer Res Treat 1996; 39:261–273 8. Sprangers MA, Groenvold M., Arraras JI, et al: The European Organization for Research and Treatment of Cancer Breast Cancer—specific quality of life questionnaire module: first results from a three-country field study. J Clin Oncol 1996; 14:2756–68 9. 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 10. de Haes JCJM, van Knippenberg FCE, Neijt JP: Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist. Br J Cancer 1990; 62:1034–1038
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25. Schwartz CE, Sprangers MAG: Methodological approaches for assessing response shift in longitudinal health-related quality-oflife research. Soc Sci Med 1999; 48:1531–1548 26. Klee M, Groenvold M, Machin D: Quality of life of Danish women: population-based norms for the EORTC QLQ-C30. Quality of Life Research 1997; 6:27–34 27. Eguchi K: Supportive care programs in cancer at the National Cancer Center in Tokyo. Support Care Cancer 1996; 41: 266–269 28. Payne DK, Hoffman RG, Theodoulou M, et al: Screening for anxiety and depression in women with breast cancer. Psychiatry and medical oncology gear up for managed care. Psychosomatics 1999; 40:64–69 29. Hanson KP, Demin EV, Blinov NN et al: Supportive care in cancer patients in St. Petersburg. Support Care Cancer 1996; 4:160–162 30. Peiper HJ: Acute psychological care by the operating surgeon. Anticancer Res 1998; 18:2261–2263 31. Alter CL, Fleishman SB, Kornblith AB et al: Supportive telephone interventions for patients receiving chemotherapy. A pilot study. Psychosomatics 1996; 37:425–431
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In a study of breast cancer survivors, the authors used the European Organization for Research and Treatment of Cancer core questionnaire Ⳮ breast module (EORTC QLQ-C30/ⳭBR23) and the Functional Assessment of Cancer Therapy—Breast (FACT-B)for the assessment of quality of life (QoL). The main focus of this study was to look at the effect of time elapsed since initial treatment on the patients’ QoL. Eighty-seven female patients (average age of 53.9Ⳳ8.7 years) were included in the study. All women had received curative cancer therapy. The average time elapsed since start of initial treatment was 4.7Ⳳ4.3 years. Reduced QoL, especially in the areas of emotional, social, and sexual functioning, was found not only after initial treatment (1–2 years) but also after long posttreatment survival (⬎5 years).From these findings, needs for specific psycho-oncological interventions are derived. The findings imply that besides recovering from the acute consequences of cancer therapy, long-term survivors of breast cancer (⬎5 years after initial treatment) still may have a special need for psycho-oncological support. (Psychosomatics 2001; 42:117–123)
W
omen with breast cancer represent the largest population of cancer survivors. High rates of curative treatment for localized disease and long-term overall survival are reported in these patients.1 It can therefore be argued that in this patient group research should not focus solely on the immediate effects of treatment, disease-free intervals, and survival rates. Another important aspect in this context is a differentiated knowledge of the long-term perspectives regarding levels of effective functioning2 and subjective well-being. A key issue in this context is the patient’s quality of life (QoL). In previous breast cancer studies, QoL served primarily as a means of evaluating somatic treatment concepts, for instance, when comparing different operative techniques—breast-conservation versus mastectomy,3,4 or different chemo- and radiotherapeutic regimens.5 These studPsychosomatics 42:2, March-April 2001
ies, in which QoL assessment was an “add on” to the clinical protocol, were primarily concerned with the shortterm effects of the therapies employed. However, as breast cancer patients enjoy long survival periods today, future studies should include QoL issues (i.e., functional aspects and life satisfaction as a main focus). There are only a few studies of breast cancer survivors dealing with the long-term adaptation beyond the first year of diagnosis. According to Ganz et al.,6 maximum physical Received April 27, 2000; revised September 7, 2000; accepted November 27, 2000. From the Departments of Biological Psychiatry, General Psychiatry, and Surgery at Innsbruck University Hospital, Innsbruck, Austria; and the Department of Psychiatry at General Hospital Brixen. Address correspondence and reprint requests to Dr. Holzner, Innsbruck University Hospital, Department of Psychiatry, Anichstr. 35, A–6020 Innsbruck, Austria. Copyright 䉷 2001 The Academy of Psychosomatic Medicine.
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Quality of Life in Breast Cancer Patients and psychological recovery was achieved 1 year after initial treatment in a cohort of 139 patients. In the following 2 years, however, there was a deterioration of QoL in many areas, such as physical and recreational activities, body image, sexual interest, and sexual functioning. In a similar study, Dow et al.7 identified a number of problems that persisted long after initial treatment. Among these problems were physical problems such as pain and fatigue; psychological problems, such as fear of recurrence; and an inability to cope with the disease and its treatment, as well as psychosocial problems such as family worries and sexual problems. In Dow et al.’s study, attention was drawn to the need to provide education, information, and support over time. Although breast cancer patients may not show obvious signs of disease, they do appear to suffer from restrictions in their QoL, possibly indicating problems with long-term adaption. A broad range of QoL instruments have been used in clinical trials among breast cancer patients in oncology,8 including the Functional Living Index-Cancer (FLIC),9 the Rotterdam Symptom Checklist (RSCL),10 and the Cancer Rehabilitation Evaluation System-Short Form (CARESSF).11 However, there are only a few QoL questionnaires that have been devised specifically for breast cancer patients. These include the Breast Cancer Chemotherapy Questionnaire (BCQ),12 the Functional Assessment of Cancer Therapy—Breast (FACT-B),2 and the European Organization for Research and Treatment of Cancer core questionnaire and breast module (EORTC QLQ-C30/ ⳭBR23).8 While the BCQ is intended to be applicable to stage II breast cancer patients undergoing chemotherapy, the FACT-B, like the EORTC QLQ-C30/ⳭBR23, was designed for use among breast cancer patients in a wide range of disease stages, undergoing different treatments to detect clinically meaningful changes in QoL over time. Both the FACT-B and the EORTC QLQ-C30/ⳭBR23 pursue a promising concept, namely the combination of a generic core questionnaire and site specific modules. For these two instruments both the core questionnaire and the breast modules have been internationally validated.2,8 In the following, we report on a cross-sectional study investigating the QoL of long-term breast cancer survivors using the EORTC QLQ-C30/BR23 and FACT-B, focusing on the question of whether time elapsed since initial treatment affects QoL. Based on the findings, appropriate medical and psycho-oncological measures that improve the QoL of breast cancer survivors will be discussed. 118
METHODS Sample For this study, we recruited patients with a diagnosis of breast cancer who had attended the outpatient unit of the department of surgery at the University of Innsbruck between February and October 1997. All women had a diagnosis of localized or locoregional breast cancer and had received curative therapy. All patients were initially treated between 1980 and 1996. During this period of time, the treatment modalities in our setting remained basically the same. This applies also for the scheme of the medical aftercare: regular visits took place at 3-month intervals during the first 2 years after initial treatment, semianually for 2–5 years after initial treatment and annually for more than 5 years after initial treatment. Only relapse-free patients whose initial treatment had taken place at least 1 year before this study were included. Exclusion criteria were the presence of other severe diseases at the time of the study. To address the main focus of this study, we divided patients into the following three groups according to the time elapsed since initial treatment: Group I: 1–2 years; Group II: 2–5 years; and Group III: more than 5 years. This division was based on the different schemes employed in the follow-up care of patients and established knowledge about the course of the disease. In Group I, the consequences of treatment, which often persist for several months, are still very much in evidence. Group II patients do not suffer any longer from impairments directly associated with treatment; but close monitoring at 6-month intervals is, nonetheless, necessary. Group III comprises patients regarded as “cured” from a medical point of view; follow-up visit are carried out on a yearly basis with this group of patients. QoL Assessment, EORTC QLQ-C30/ⳭBR23, FACT-B QoL was assessed using two different instruments, the EORTC QLQ-C30, including the breast cancer module BR23,8 and the FACT-B,2 consisting of both a generic part (FACT-G) and a breast cancer specific module. They have been shown to have good validity and reliability properties both for the English original and the translations into various languages including German.13 Detailed descriptions of both inventories can be found elsewhere.14–21 The instruments are similar with respect to their length, type of response scale, time frame, and, to a somePsychosomatics 42:2, March-April 2001
Holzner et al. what lesser extent, their subscale structure. Both instruments have subscales measuring physical, emotional, functional, and social aspects. In addition, the EORTC QLQ-C30 has additional subscales assessing cognitive functions, symptomatology, and financial impact of the disease. It has recently been shown that despite similar nomenclature the two core instruments emphasize somewhat different aspects of QoL. The EORTC QLQ-C30 concentrates largely on physical functioning and clinical symptoms, whereas the FACT-G has a stronger focus on social and emotional aspects.22 For this reason, we used both instruments. Statistical Methods For comparison of sociodemographic and clinical data in the three groups (1–2 years, 2–5 years, and ⬎5 years since initial treatment) the Kruskal-Wallis test was employed for continuous and ordinally scaled variables and the chi-square test in the case of dichotomous variables. Analyses of covariance (ANCOVA) were performed for comparing the three groups regarding QoL subscales. We included the following covariates: age, marital status (married/with partner vs. all other categories), education, type of surgery (breast conserving vs. mastectomy), previous chemotherapy, extent of disease (local vs. locoregional). The P-values for pairwise group comparisons are based on F tests for linear contrasts (adjusting for all above-mentioned covariates). RESULTS Sample Characteristics A total of 103 breast cancer patients in outpatient follow-up consented to complete the data sheets and the QoL inventories. Six patients (4.8%) failed to complete the questionnaires (reasons given were mostly lack of time). Ten others failed to meet inclusion criteria, as they were suffering from other diseases at the time of investigation. Thus, there remained 87 patients who were eligible for statistical analysis [30 in Group I (1–2 years after initial treatment; meanⳲSD⳱1.5Ⳳ 0.5) 28 in Group II (2–5 years after initial treatment; meanⳲSD⳱3.4Ⳳ 0.8) and 29 in Group III (⬎5 years after initial treatment; meanⳲSD⳱10.4Ⳳ4.2)]. Table 1 presents an overview of the demographic and clinical data. Patients in Group III were slightly, but not Psychosomatics 42:2, March-April 2001
significantly, older than those of the two other groups. No significant differences among the three groups were observed for any of the other variables. In particular, groups did not differ from each other in terms of treatment. The mean functioning level for all three groups as rated by the Karnovsky Index was close to the maximum of 100. QoL Assessment Results of the QoL subscales in the three groups are summarized in Table 2 (EORTC QLQ-C30/Ⳮ BR23) and Table 3 (FACT-B). Patients with a survival duration of at least 5 years since initial treatment (Group III) exhibited significantly more restrictions in global QoL than the other two groups of patients (P⬍0.05). The same pattern can be observed for the subscale “role functioning.” Long after successful treatment, patients apparently still experienced difficulties in occupational tasks and felt handicapped in organizing their leisure time activities and pursuing their hobbies. Similarly, Group III showed more impairments (P⬍0.05) regarding sexual functioning and enjoyment than the two other groups. Group II (2–5 years), in comparison to Group I and III (1–2 years and ⬎5 years), showed significant values (P⬍0.01) in the area of emotional functioning (e.g., tension, depression and worries). Significantly less impairments were also seen in the area of cognitive functioning (memory and concentration) in Group II. No significant differences among the three groups could be established regarding the EORTC-symptom subscales. Fatigue, sleep disturbances, and pain were reported most frequently across groups. Similarly to the results of the EORTC QLQ-C30/ ⳭBR23, the FACT-B showed higher values in Group II (2– 5 years) than in the other two groups in almost all domains (Table 3). In particular, this pattern was found in the emotional well-being (e.g., existential worries and depression), social well-being (e.g., social support and social integration), and breast (e.g., sexual attractiveness) subscales. DISCUSSION As the majority of breast cancer patients can be treated with a curative intent and therefore live for extended periods of time, assessment of their long-term QoL is important for several reasons.23 First, identifying specific late psychosocial sequelae of breast cancer may help clinicians target 119
Quality of Life in Breast Cancer Patients possible late effects that need special attention in patients’ follow-up care. Second, information on long-term QoL may help health care planners determine those patient services that should be maintained or ones that should be developed.
TABLE 1.
Sociodemographic and clinical data for the time elapsed since start of initial treatment 1–2 Years nⴔ30
2–5 Years nⴔ28
⬎5 Years nⴔ29
MeanⳲSD Range Single Married/with partner Divorced Widowed Elementary school Compl. Apprenticeship A-level, university Local Locoregional Breast conserving Mastectomy Yes No Yes No
52.9Ⳳ8.3 32–68 25% 62.5% 9.4% 3.1% 46.9% 34.4% 18.8% 66.7% 33.3% 39.0% 61.0% 23.1% 61.0% 31.2% 68.8%
52.5Ⳳ8.5 30–70 3.7% 85.2% 3.7% 7.4% 48.1% 44.4% 7.4% 75.0% 25.0% 41.2% 58.8% 37.0% 58.8% 33.3% 66.7%
55.1Ⳳ8.8 37–70 13.0% 65.2% 4.3% 17.4% 43.5% 52.2% 4.3% 79.3% 20.7% 39.4% 60.6% 17.45 60.6% 56.5% 43.5%
Yes No Yes No At the moment MeanⳲSD Range
15.6% 84.4% 12.5% 75.0% 12.5% 98.8Ⳳ5.5 70–100
7.4% 92.6% 7.4% 88.9% 3.7% 98.9Ⳳ3.2 90–100
13.0% 87.0% 4.3% 95.75 0.0% 99.6Ⳳ2.1 90–100
Number of patients Age Marital status
Education
Extent of disease Surgery Chemotherapy Radiotherapy Combined therapy Hormonal therapy
Karnofsky Index
TABLE 2.
The present study is aimed at investigating the extent to which QoL of breast cancer survivors depends on the time elapsed since initial treatment and in obtaining a rationale for effective psycho-oncological aftercare. In order to operationalize this, comparisons were made among three
The European Organization for Research and Treatment of Cancer core questionnaire and the breast module (EORTC QLQC30/ⴐBR23) functioning scales for the time elapsed since start of initial treatment Group I 1–2 Years MeanⴣSD
Group II 2–5 Years MeanⴣSD
Group III ⬎5 Years MeanⴣSD
I vs. III
P-Valuesb I vs. II
II vs. III
89.8Ⳳ14.5 88.9Ⳳ17.1 91.7Ⳳ12.2 69.4Ⳳ22.4 86.7Ⳳ1 73.5Ⳳ22.2
92.4Ⳳ7.0 89.3Ⳳ16.5 93.4Ⳳ9.5 85.2Ⳳ15.0 97.0Ⳳ 78.8Ⳳ20.5
87.4Ⳳ15.3 85.6Ⳳ21.2 76.4Ⳳ30.6 67.8Ⳳ25.6 80.5Ⳳ8 61.7Ⳳ31.3
NS NS 0.020 NS NS 0.022
NS NS NS 0.0017 NS NS
NS NS 0.009 0.002 0.005 0.003
75.3Ⳳ29.8 37.2Ⳳ29.9 66.7Ⳳ28.0 54.4Ⳳ28.3
79.8Ⳳ27.3 51.2Ⳳ29.2 71.7Ⳳ22.4 53.6Ⳳ36.7
84.5Ⳳ20.1 28.7Ⳳ27.4 48.9Ⳳ27.8 60.9Ⳳ32.2
NS (0.10) 0.037 NS
NS NS NS NS
NS 0.027 0.010 NS
a
EORTC QLQ-C30 Physical functioning Social functioning Role functioning Emotional functioning Cognitive functioning Global quality of life EORTC QLQ-BR23a Body image Sexual functioning Sexual enjoyment Future perspective
Note: aHigher scores indicate better quality of life. b Analysis of covariance: adjustment for age, marital status, education, surgery, previous chemotherapy, and extent of disease.
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Holzner et al. groups of breast cancer survivors according to time elapsed since initial treatment (Group I: 1–2 years; Group II: 2–5 years; and Group III: ⬎5 years). It should be noted that due to the cross-sectional design of the study, changes in QoL over time could only be determined indirectly. However, as has been indicated by Sprangers and Schwartz,24,25 even a longitudinal design does not necessarily guarantee an unbiased assessment of changes in QoL in the course of time, as due to a response shift a systematic error may occur. For the same reason we refrained from a comparison of the patients’ QoL scores with that of a “normative” general population. The results of our study are somewhat unexpected. Restrictions in QoL were reported not only by patients in the first 2 years after initial treatment but also by patients with a survival time of more than 5 years who had been considered cured from a medical point of view. Patients with intermediate remission periods (2–5 years since initial treatment) enjoyed the highest QoL, similar to that of healthy women.26 The reasons for this distinct pattern of QoL will now be discussed in greater detail. In the early phase after initial treatment (1–2 years), patients have a clearly reduced QoL in many areas. This is especially true for the emotional and social domains. With regard to the emotional domain, clinical experience shows that fear about possible relapse and associated depressive reactions play an important role in the process of coping with the illness and its treatment. Similar observations were also made by Dow et al.7 Restrictions in the social domain may be due to illness-related changes in social roles. The majority of the women were housewives, having been responsible for the organization of households. Adapting to the much more passive patient role most likely has deprived these women of important role functions in the family setting. TABLE 3.
A further area of marked problems in the early posttreatment phase is sexuality. The reasons for this are obvious, but complex, and include both psycholgical factors, such as feelings of lacking physical attractiveness after breast surgery, and somatic factors, such as vaginal dryness, resulting from chemotherapy-induced menopause or from hormonal therapy. From about the third year after initial treatment the breast cancer survivors in our study enjoyed a high QoL in most domains of life, compared with the first 2 years. Presumably, at this point of time, the patients have managed to overcome, to a large extent, the physical and psychological burdens imposed by the illness and its treatment and have adapted to their new situation. Surprisingly, restrictions in QoL reappear in long-term relapse-free patients (⬎5 years posttreatment) and in some cases are even more pronounced than in the initial phase after treatment. The areas of life affected are those of emotional and role functions, social well-being, cognitive functions, and sexuality. This pattern cannot be observed for physical symptoms (e.g., pain, fatigue, constipation, and dyspnea), which occurred in the same extent across all groups. The reappearance of emotional problems in patients in long-term remission may be because of a variety of reasons. Although the patients have learned to cope with the somatic concerns of the disease and its treatment, the focus may shift to psychological issues. While the patients still have to contend with the necessity of regular after care visits and chronic physical long term effects of cancer treatment, such as arm swelling or scar pain, which make them continually aware of the illness they have survived and have created possible distress and anxiety regarding a possible relapse. The patients’ social support network might
Functional Assessment of Cancer Therapy-Breast (FACT-B) subscales for the time elapsed since start of initial treatment
FACT-B Subscales Physical well-being Emotional well-being Functional well-being Social well-being Breast Modul Total (FACT-G)
Group I 1–2 Years
Group II 2–5 Years
Group III ⬎5 Years
MeanⴣSD
MeanⴣSD
MeanⴣSD
I vs. III
I vs. II
II vs. III
25.0Ⳳ3.9 18.7Ⳳ3.7 21.1Ⳳ6.4 17.5Ⳳ6.1 24.4Ⳳ6.1 82.3Ⳳ14.5
26.4Ⳳ2.6 20.5Ⳳ2.7 23.4Ⳳ3.3 20.4Ⳳ3.4 27.8Ⳳ4.0 91.1Ⳳ9.2
24.3Ⳳ5.6 18.0Ⳳ4.3 20.9Ⳳ5.1 17.4Ⳳ5.1 24.4Ⳳ6.4 80.3Ⳳ15.1
NS NS NS NS NS NS
NS (0.058) NS 0.025 0.050 0.034
NS 0.002 NS 0.037 0.026 0.015
P-Valuesb
Note: aHigher scores indicate better quality of life. b Analysis of covariance: adjustment for age, marital status, education, surgery, previous chemotherapy, and extent of disease.
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Quality of Life in Breast Cancer Patients show a diminishing understanding of the psychological and physical problems just described and may be less inclined to offer the support needed. This may also hold true for the care team, who consider the patients cured and pays less attention to the patients’ emotional situation. A similar explanation might apply to the reported impairments in sexual life. Five years after treatment, the initial understanding by the partner is possibly exhausted. As the illness- and treatment-related impairments continue to have adverse effects on sexual functions, originally compensated problems may surface, especially if not dealt with adequately earlier. Impairments reported in role functioning might be similarly explained in that support initially offered in occupational and household activities may tend to disappear with time. The “rebound effect” observed in this study (a recurring reduction of QoL after initial improvement) was most pronounced, as mentioned earlier, in the areas of emotional functioning, role functioning, social well-being, and sexual life. Ganz et al.6 report similar results, indicating that a whole series of psychosocial and sexual problems not only continue to plague breast cancer patients, but might also worsen with time.
In terms of psycho-oncological care this means that patients should be offered appropriate support not only during their hospital stay and when they are receiving chemoor radiotherapy but also after remission and completion of therapy.7,27,28 Such help should encompass the whole spectrum of psycho-oncological therapy, extending from supportive conversations to specific psychotherapeutic interventions.29,30 Within the framework of long-term aftercare, special attention will need to be paid to problems in the area of sexuality. In conclusion, our study has identified a need for further development of psycho-oncological concepts to take into account the rebound effect in QoL described above.31 The objective must be the integration of psycho-oncological support into the somatic treatment to ensure comprehensive care for breast cancer survivors. A first step toward this aim has now been taken at Innsbruck University Hospital (Division of Psycho-oncology). On the basis of the present findings, we have established a special psycho-oncological program for the long-term support of this group of patients.
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