Sexuality, body image and quality of life after high dose or conventional chemotherapy for metastatic breast cancer.
Kami Maker Ceinwen E. Cumming Alan W Lees Marilyn Hundleby Jean-Marc Nabholtz Dianne K. Kieren Heather Jenkins Carolyn Wentzel Michael Handman & David C. Cumming Departments of Oncology, Human Ecology and Obstetrics/Gynaecology Cross Cancer Institute and the University of Alberta Edmonton, Alberta Correspondence concerning this paper should be addressed to Dr. C.E. Cumming, Department of Psychology, Cross Cancer Institute, 11560 University Avenue, Edmonton, Alberta, T6G 1Z2. Tel: (403) 432-8766; Fax: (403) 432-8357. ABSTRACT: As survival has improved in patients with metastatic breast cancer, quality of life issues have become more important in clinical and research assessment of treatment. We examined psychological aspects of sexuality, body image and health-related quality of life (HRQOL) in 19 patients who had completed high dose chemotherapy and peripheral stem cell transfusion (HDC/PBSCT), and in 19 who had undergone conventional chemotherapy (CC). There were no differences in mean age, time since treatment or demographic variables except education level. We found no significant differences in HRQOL (Functional Living Index-Cancer) nor on the Body Image Scale. On a measure of sexual fears, 74% of the HDC/PBSCT patients and 63% of the CC patients thought that cancer would make them unattractive to their mates. As well, 68% of the HDC/PBSCT patients and 37% of the CC women were fearful of sex being painful as a result of their cancer (p<0.01). Sixty eight percent of HDC/PBSCT women and 47% of CCs had change in level of sexual desire since treatment following their diagnosis of metastatic disease. Eighty five per cent of HDC/PBSCT and all CC women experienced this as decreased desire. We found few significant differences between the groups, but there were noteworthy effects on body image and psychological aspects of sexuality with both treatments. Key words: Breast cancer Sexuality Body image Health-related quality of life INTRODUCTION Breast cancer is the most common malignancy in women, responsible for 27% of malignant tumours and 20% of cancer deaths. Once metastatic disease is documented, it has been considered incurable, with a median survival time of less than 2 years (Henderson, 1991). Poor survival has lead to aggressive high dose chemotherapy regimes with autologous peripheral blood stem cell transplant support (HDC/PBSCT). Recently, it has been shown that at least 50% of women undergo remission with high dose chemotherapy, compared with 5-15% treated with multi-dose conventional chemotherapy (Booser & Hortobagyi, 1992). As length of survival following a cancer diagnosis has increased, there has been a shift in focus from dying of cancer to living with the disease. Interest has been directed, in general, toward the evaluation of the effects of breast cancer and related medical therapies on health-related quality of life (HRQOL) (Baum, Ebbs, Fallowfield, & Fraser, 1990; Boyd, Selby, Sutherland, & Hogg, 1988: Coates, Gebski, Stat, Bishop, Jeal, Woods, Snyder, Tatersall, Byrne, Harvey, & Gill. 1987; Hallgren, Paterson, & Arcand, 1984; Levine, Guyatt, Gent, De Pauw, Goodyear, Hryniuk, Arnold, Findlay, Skillings, Bramwell, Levin, Bush, Abu-Zahra, & Kotalik, 1988). The area of quality of life assessment is not without controversy, particularly in the definition of the construct. The present literature consensus defines "health-related quality of life" as encompassing three major domains: physical well-being, psychological state and social functioning. Other areas are also currently being included such as personal financial impacts, and sexuality and body image. There is an emerging literature on HRQOL in breast cancer patients during treatment in HDC/PBSCT programs (Ahles, Tope, Furstenburg, Hann & Mills, 1996; Larsen, Gardulf, & Nordstrom, 1996; Litwins, Rodrique, & Weiner, 1994; Weiner, 1994). McQuellon and colleagues (1976) have recently reported that long-term quality of life in breast cancer patients is unchanged following HDC/PBSCT. These authors also reported that in structured interviews, concerns about physical appearance and about personal and physical relations emerged. The substantial physical illness immediately after high-dose chemotherapy is reflected in poor HRQOL, but this rebounds to normal levels within one month following discharge (Cumming, Nabholtz, Wentzel, Handman, Clinch, Sansregret, & Cumming, 1996). There are no published comparisons of quality of life following conventional and high-dose chemotherapy in a population of breast cancer patients. Further, physicians dealing with clinical and research problems do not generally ask about side effects of treatment in which there is substantial subjective patient input. In particular, until recently researchers have placed little emphasis on sexuality and body image during and after either high-dose or conventional forms of treatment (Love, Levanthal, Easterling, Nerenz, 1989). Women believe themselves to be uninformed about the sexual side effects of cancer treatment (Kaplan, 1994) and about body image (Mathieson, 1994). They view these areas to be of major concern (Hopwood, 1993). The goal of the present study, therefore, was to examine health-related quality of life, sexuality, and body image in women with metastatic breast cancer who had undergone either conventional or high-dose chemotherapy. SUBJECTS AND METHODS SUBJECTS The subjects in the study were 38 women, age 30 to 63 years, from urban and rural areas of Western Canada. All had histologically proven breast cancer and evidence of metastatic disease. Nineteen of the women had undergone HDC/PBSCT and 19 underwent conventional chemotherapy (CC) at least three months earlier to avoid the influence of any transient acute treatment effects. At this point, physical symptoms due to treatment had been resolved. All patients were being treated for metastatic disease following an interval of time after initial diagnosis and treatment. Mean time ([+ or -]SEM) since diagnosis for the CC group was 48.5[+ or -]12.1 months (range 17-240 months). Corresponding figures in the HDC/PBSCT group were 42.7[+ or -]9.8 months (range 7-181). A Student's t-test was performed and there was no significant difference between the means (t=0.3673, p=0.7). Initial treatment was modified radical mastectomy in 13 of 19 women in the HDC/PBSCT group; the remainder had lumpectomy or segmental excision followed by irradiation. Corresponding figures in the CC group were that 10 patients had modified radical mastectomy and 9 either lumpectomy or segmental excision with irradiation. Fourteen of 19 CC subjects and 18 of 19 HDC/PBSCT subjects had chemotherapy following their initial diagnosis and treatment, and 3 had also had tamoxifen -- 2 in the HDC/PBSCT group versus 1 in the CC group. Five HDC/PBSCT and six CC patients were menstruating prior to their chemotherapy and only two, both in the CC group, were menstruating following the treatment. Three women (two HDC/PBSCT and one CC patient) had used hormone replacement therapy prior to cancer diagnosis. None of the women was using hormones either prior to or following the present treatment. HDC/PBSCT made the patients quite unwell. Specific problems include a general malaise, weakness, and neutropenia with secondary infections. The acute physical effects of treatment were eliminated in all subjects by three months. Detailed inclusion and exclusion criteria for the study are summarised in Table 1. STUDY DESIGN The research presented here was a comparative and descriptive cross-sectional study of two groups of breast cancer patients. Participants provided demographic information, health and psychosocial history on a Subject Data Form. The instruments which we administered included a measure of cancer-related fears (Fears about Cancer and Sexuality Questionnaire, Schover, Fife & Gershenson, 1991), a Body Image Questionnaire modified from Robinson, Scott, & Faris (1994), two individual items developed from the Sexual History Form (Schover, Friedman, Weiler, Heiman, & LoPiccolo, 1982), and a HRQOL questionnaire, the Functional Living Index-Cancer (Schipper, Clinch, McMurray, & Levitt, 1984), together with items from the Disease and Treatment Specific Module -- DTSM -- (Cumming, et al., 1996). Table 1 Inclusion and exclusion criteria for study participants Criteria for Criteria for ControlsHDC/PBSCT Patients 1. Women aged 18-60 years 1. Women aged 18-60 years2. Three months 2. Three monthspost treatment post treatment3. HDC/PBSCT regime 3. Conventional chemotherapy regime4. Breast cancer histologically 4. Breast cancer histologicallyproven proven5. No other primary cancers 5. No other primary cancers6. Metastatic breast cancer 6. Metastatic breast cancer7. No psychiatric or 7. No psychiatric oraddictive disorders addictive disorders8. No CNS metastases 8. No CNS metastases The Fears about Cancer and Sexuality Scale This questionnaire asks patients to rate the extent to which five different issues about cancer and sexuality have been a source of upset and worry to them. A 5-point Likert scale is used, and internal consistency correlations range from .13 to .72 with a mean of .49. Overall reliability estimated by Cronbach's alpha was .77, with a standardised alpha of .75. The Body Image Scale This scale consisted of the body image subscale from the Derogatis Sexual Functioning Inventory (Derogatis & Melisarotos' 1979) with added items. Items added by Robinson, Scott, & Faris (1994) were included, but without those specific to gynecological cancer. Functional Living Index-Cancer (FLI-C) FLI-C is a brief, 22-item, instrument developed by Schipper, Clinch, McMurray, and Levitt (1984) to assess quality of life in cancer patients. The questionnaire is completed by the subject who makes a mark on a visual analogue scale for each of the 22 items. One mean score measuring overall quality of life is obtained. Design of this instrument entailed first obtaining information from a series of structured subject interviews, followed by use of a panel including patients and health professionals to provide a substantial measure of face validity for the questionnaire. The subject sample for instrument design in the original study was 837 subjects. Factor analysis of the FLI-C isolated four component factors: 1) physical well-being; 2) psychological state; 3) family situational interaction; and 4) sociability. Test-retest reliability is in the range of .80. Following the original study (Schipper, Clinch, McMurray, & Levitt, 1984), the FLI-C has been shown to provide a valid measure of overall functional quality of a cancer patient's day-to-day life (Morrow, Lindke, Black, 1992; Seidman, Portenoy, Yao, Lepore, Mont, Kortmansky, Onetto, Ren, Grechko, Beltangady, Usakewicz, Souhrada, Houston, McCabe, Salvaggio, Thaler, & Norton, 1995). The DTSM was designed to record metastatic breast cancer-specific symptoms such as presence of cough, and chemotherapy-specific symptoms such as nausea. Items were designed with the collaboration of the FLI-C author J. Clinch, and were validated in a longitudinal study (Cumming, et al., 1996). Two items were modified from Schover and colleagues' (1982) Sexual History Form. The modified question read, "If in a relationship, overall how satisfactory to you is your relationship with your mate?" [The modification is in italics.] A question modelled on the primary question was added to assess change in the relationship over time. Similar modifications to a question from Schover and colleagues related to the level of desire and to its change over time were also added. A "yes/no" question asking if there were anything the subject would have liked to know about the effects of treatment on sexuality prior to treatment was answered by several as an open-ended question. A true open ended question asked, "Please note any comments you might have about the effects of your cancer treatment on your sexuality (how you feel about yourself as a woman -- all aspects of being a woman [e.g., feelings, thoughts, behaviour, body image])." Instruments were administered at least three months following treatment, by which time the physical effects of treatment have resolved. High-dose chemotherapy involved induction chemotherapy with adriamycin, 5-fluorouracil, and escalated doses of cyclophosphamide with human recombinant granulocyte stimulating factor. This was followed by high-dose polychemotherapy with mitoxanthrone, cyclophosphamide, and vinblastine or carboplatin with hematopoietic support as described elsewhere (Gluck, Arnold, Ho & Nabholtz, 1995). Conventional chemotherapy involved the use of one of several different regimes of conventional chemotherapy in current use. The most common regime was six cycles of 5-fluorouracil, adriamycin, and cyclophosphamide (FAC), one cycle every three weeks. STATISTICAL ANALYSIS Between group comparisons were made with Student's unpaired t-test and 2 as appropriate. RESULTS The demographic information for women who had undergone high-dose (HDC/PBSCT, n=19) or conventional chemotherapy (CC, n=19) for metastatic breast cancer is shown in Table 2. There was no difference in mean age or mean time since treatment. The proportions of women who were in a stable relationship, had had children, were employed outside the home and had a family income greater than $20,000 (CDN) were similar in the two groups. The educational level of women in the HDC/PBSCT group was significantly higher (p<0.01) The short scale results are shown in Table 3. There was no difference in body image as measured by the Body Image Scale. Scores in both groups suggested a problem with body image following cancer diagnosis and treatment. There was no difference in quality of life as measured by The Functional Living Index-Cancer (FLI-C). Health Related Quality of Life (HRQOL) scores were generally good in both groups. There were no differences in items on the DTSM and, in general, both parts of the module reflected good quality of life. Table 2 Demographic information for women who had undergone high-dose(HDC/PBSCT, n=19) or conventional chemotherapy (CC, n=19) for metastaticbreast cancer. High-dose Conventional Chemotherapy Chemotherapy Age (years) 45.5 ([+ or -]7.1) 47.2 ([+ or -]7.4)Time since treatment 10.0 ([+ or -]6.6) 14.2 ([+ or -]10.1)(months) Parous 90% 90%Stable relationship 95% 74%Educational level 74% 32% (1)beyond grade 12Family income greater 63% 74%than $20,000 (CDN)Employed outside 42% 47%the home (1) = p<0.01 Figures in parentheses refer to Standard Deviations. Table 3 Short scale scores in women who had undergone high-dose (n=19) orconventional chemotherapy (n=19) for metastatic breast cancer. High-dose Chemotherapy Conventional Chemotherapy Body Image Scale 66.0 ([+ or -]6.1) 68.3 ([+ or -]8.5)Sexual Fears Scale 9.1 ([+ or -]2.5) 10.6 ([+ or -]2.8)FLI-C 121.4 ([+ or -]14.6) 113.0 ([+ or -]20.9)Disease-specific items 107.5 ([+ or -]15.9) 106.0 ([+ or -]19.5)Treatment-specific items 102.7 ([+ or -]10.1) 102.8 ([+ or -]45.4) There were no significant differences between groups. Figures inparentheses are Standard Deviations. Responses to individual items from the Sexual Fears Scale and those adapted from Schover are shown in Table 4. A large proportion of women had problems with sexuality, including fear of loss of physical attractiveness, fear of pain, and loss of sexual desire. There was a significant difference between groups in the proportion of women who were fearful that the cancer would make sex painful or impossible. The women in the HDC/PBSCT group were significantly more likely to be worried about this problem. Table 4 Individual item analysis in women who had undergone high-dose(n=19) or conventional chemotherapy (n=19) for metastatic breast cancer. Specific items fromSexual Fears Scale High-dose Conventional Chemotherapy Chemotherapy Fearful that cancer would 74% 63%make them unattractive orunacceptable to matesFearful that cancer 68% 37% (1)treatment would makesexual activity painful orimpossible (Numeric Sexual Fears Scale total score is shown in Table 3). (1) p<0.01 on 2.Individual items adapted from Schover's Sexual History Form. Frequency of Sexual Desire Weekly Less than Monthly Not at all weekly Conventional chemotherapy 6 4 3 5HDC/PBSCT 5 3 3 5 High-dose Conventional Chemotherapy Chemotherapy Change in sexual desire since treatmentDecreased sexual desire 58% 47%Increased sexual desire 11% 0%Unchanged sexual desire 32% 53% Relationship with mateMostly or very satisfactory 58% 68%Mostly or very unsatisfactory 26% 0% Effect of cancer on mateEffect on mate reported 63% 42%No effect on mate reported 26% 26% A large proportion of women in both groups had low frequency of desire and indicated that this had changed from before the present treatment. This answer was given despite the majority of women in both groups being in ovarian failure before their current bout of treatment. Surprisingly, two women from the CC group indicated that they had increased desire. Both women were highly intelligent, professional women but without other distinguishing characteristics; neither had retained ovarian function even prior to the index treatment. A majority of patients had satisfactory relationships with their mates, but many believed that their cancer had affected their mate. Our open-ended question allowed patients an unstructured opportunity to say what they felt was important. In general, they suggested that sexuality was less important than life itself. Responses to the open-ended question tended to reflect an admission and acceptance of physical discomfort in sexual activity (many mentioned vaginal dryness and/or discomfort with intercourse which was not adequately dealt with. However, most tended to downplay these symptoms and the lack of interest in sexuality in the light of being alive and closer to their partner). They placed a higher value on closeness, love, and caring. For example, "Emotionally it has a positive effect. We have come to appreciate the joy in simple things in life. Materialism is not an interest but intimately or sexually, it has had a negative effect. My desire has been reduced." Another patient stated, "In my relationship with my husband we have closeness in it but my hormones are dead." The implication is that the major problem is loss of sexual interest, perhaps secondary to destruction of the ovarian steroidogenesis; relationships, however, are preserved. DISCUSSION Quality of life assessments can be valuable in both clinical and research situations. Assessments are potentially useful in clinical situations in alerting health care providers to frequent areas of concern (Myerowitz, 1993). Health care providers' perceptions of patients' psychological distress, information needs and cancer-related concerns are frequently inaccurate (Aaronson, 1990; Fossa, Aaronson, Newing, van Cangh, Kurth, & De Pauw, 1990). Accurate information can be used by patients and their families to understand common reactions to their disease, and for treatment-related decision-making. Health care personnel can also use the information as an aid for decision-making and for planning interventions for patients and families. In research, HRQOL evaluations can be used as a prognostic indicator, to compare patient experiences of treatments with marginally different outcomes, and to evaluate the benefits and costs of treatment. In the present study, we compared aspects of quality of life following HDC/PBSCT and conventional treatments. There has been a general clinical assumption that high-dose chemotherapy and autologous peripheral stem cell transplantation would lead to impaired quality of life compared with standard chemotherapy. Part of this assumption comes from anticipated effects of the chemotherapy, and part from experience with allogeneic bone marrow transplant. However, the findings indicate that quality of life as measured by the FLI-C in patients who have undergone HDC/PBSCT is little different from that in a similar group of patients who have been treated with conventional chemotherapy treatment; afterwards, women in both groups reported good general quality of life. The lack of difference in HRQOL outcome should not give rise to complacency, since it is clear that sexuality and body image are very clearly problem areas for health care providers to consider in both forms of therapy. The lack of sexual interest may be a direct result of decreased sex steroid production by the ovaries secondary to chemotherapy, a problem almost universal in both patient groups (all but two subjects in the CC group). In this situation, vaginal dryness may also be a significant factor (as many patients indicated), although other factors may also be involved, such as situational depression or anxiety. However, we did not observe clinically significant depression or anxiety in these patients or in a similar group studied in detail (Yang, Cumming, Nabholtz, Cumming, Hundleby, Lees, Jenkins, & Sansregret, 1997). None of the patients had hormone replacement therapy subsequent to their earlier diagnosis of cancer nor following the diagnosis of metastatic disease. Currently, breast cancer is considered an absolute contraindication to hormone replacement therapy, although controlled trials are underway to examine the common assumption that such treatment has an effect on longevity (Theriault, 1996). Most patients indicated that their relationships were fine, but that sexual activity was no longer of interest. They generally appeared satisfied with, or resigned to, their lack of expression of sexuality, but many said they would have liked better education about effects on sexuality prior to treatment. A broader view of sexuality than simply intercourse with a male partner is needed to assist these women in coping with the effects of breast cancer and its treatment. It is interesting that women who undergo HDC/PBSCT appear to be better educated than those who undergo conventional chemotherapy, even in the Canadian health care setting where payment for services is not a factor. It is not clear why choices should vary according to educational level, but patient- and physician-related factors may determine that such patients are selected for a more complex therapy. Alternatively more educated patients may have a fuller understanding of the potential benefits and risks of treatment. The limitations of the present study are its cross-sectional and retrospective nature, its lack of focus on physical symptomatology related to intercourse, and acceptance of some patients into the study at three months following treatment which may have been too early for some symptoms to develop. Although physical symptoms from the chemotherapy at this time were abated, possible longer-term effects on sexuality may not yet have developed or become apparent. However, the answers given to questions by the small number of patients accepted three to six months following treatment did not significantly differ from those of women who answered the questionnaire much later in the evolution of their condition. There are implications from the findings of the study for psychological intervention. The women and their partners may benefit from educational intervention before treatment or during the follow-up period. Knowledge, particularly about the "menopause-like" symptoms, and educational counselling may be beneficial. Some couples may require sexual therapy. Physicians and other health care providers may need to more fully understand the importance of the psychological and sexual difficulties experienced by many patients; living with cancer means a change in direction which many of us would find uncomfortable. We propose two levels of educational intervention: those for health care professionals; and those for women and their partners (e.g., Schover, 1988; Reilly, 1995).
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|Author:||Kami Makar, and others|
|Publication:||The Canadian Journal of Human Sexuality|
|Date:||Jan 1, 1997|
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