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cancer Concerns

cancer Concerns - D IUNIVERSITY OF Spencer S M Lehman J M...

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Unformatted text preview: D IUNIVERSITY OF Spencer, S. M., Lehman, J. M., Wynings, C., Arena, P., Carver, C. S., Antoni, M. H., Derhagopian, R. P., & Ironson, G. (1999). Concerns about breast cancer and relations to psychosocial well—being in a multiethnic sample of early—stage patients. Health Psychology, 18, 159—168. Copyright 1999 by the American Psychological Association. This article has been copied and delivered electronically by permission. No further copying or distribution is permitted Without permission of the publisher. Department of Psychology P.O. Box 248185 Coral Gables, FL 53124-2070 Telephone (305) 284-2814 Fax (505) 284-3402 Health Psychology 1999,Vol. 18. No.2. 159—168 Copyright 1999 by theAmerican Psychological Association. Inc. 0278-6133/99/SBDO Concerns About Breast Cancer and Relations to Psychosocial Well—Being in a Multiethnic Sample of Early-Stage Patients Stacie M. Spencer University of Pittsburgh Jessica M. Lehman, Christina Wynings, Patricia Arena. Charles S. Carver, Michael H. Antoni, Robert P. Derhagopian, and Gail Ironson University of Miami Neil Love Jackson Memorial Hospital Much work on psychosocial sequelae of breast cancer has been guided by the assumption that body image and partner reaction issues are focal. In a tri-ethnic sample of 223 women treated for early-stage breast cancer within the prior year. the authors assessed a wider range of concerns and relations to well—being. Strongest concerns were recurrence, pain, death, harm from adjuvant treatment. and bills. Body—image concerns were moderate; concern about rejection was minimal. Younger women had stronger sexual and partner—related concerns than older women. Hispanic women had many stronger concerns and more disruption than other women. Life and pain concerns and sexuality concerns contributed uniquely to predicting emotional and psychosexual disruption; life and pain concerns and rejection concerns contributed to predicting social disruption. In sum. adaptation to breast cancer is a process bearing on several aspects of the patient’s life space. Key words: breast cancer. quality of life, psychosocial sequelae, psychological well-being, ethnicity The experience of breast cancer is unquestionably the source of substantial distress. However, among early-stage patients with no prior history of psychiatric disturbance, severe psychiatric symptoms are less common than was once believed and far less common than among patients with more advanced cancers (Bloom et al., 1987; Gordon et al., 1980; Lansky et al., 1985; Penman et al., 1987; for reviews see Glanz & Lerman, 1992; Irvine, Brown, Crooks, Roberts, & Browne, 1991; Moyer & Salovey, 1996). The experience of early-stage breast cancer is now widely viewed as a crisis, which is weathered during the period of about a year postsurgery by the majority of patients. Women‘s psychological responses to early—stage breast cancer are influenced by many factors, including surgical procedure. Mastectomy patients typically report poorer psychosexual adjustment (assessed as sense of attractive- Stacie M. Spencer, Department of Psychology. University of Pittsburgh; Jessica M. Lehman, Christina Wynings, Patricia Arena. Charles S. Carver, Michael H. Antoni, Robert P. Derhagopian. and Gail Ironson, Department of Psychology, University of Miami; Neil Love, Jackson Memorial Hospital, Miami. Florida. This research was supported by Research Grant CA—64710 from the National Cancer Institute and Training Grant J 4236-DAMD1794 from the Department of Defense. Correspondence concerning this article should be addressed to Charles S. Carver, Department of Psychology. University of Miami, Coral Gables, Florida 33124-2070. Electronic mail may be sent to [email protected] 159 ness, femininity, and sexual desirability) than lumpectomy patients, though the groups do not differ in mood disturbance (e.g., Bartelink, van Dam, & van Dongen. 1985; de Haes & Welvaart, 1985; Fallowfield, Baum, & Maguire, 1986; Kemeny, Wellisch, & Schain, 1988; Morris & Royle, 1988; Pozo et al., 1992; Sanger & Reznikoff, 1981; Schain et al., 1983; Steinberg, Juliano, & Wise, 1985; Taylor, Lichtman, Wood, Bluming, Dosik, & Leibowitz, 1985; Wellisch et al., 1989). This pattern of findings illustrates both the diversity among psychological sequelae of breast cancer and the fact that the sequelae do not necessarily have the same determinants. This work also reflects an orienting assumption that seems implicit in much research on psychosocial responses to breast cancer. Specifically, it often seems to be assumed that the major concern of the early-stage breast-cancer patient is the impact of the disease and its treatment on her body image (Carver et al., 1998; Mastrovito, 1974; Meyerowitz, 1980; Polivy, 1977; Schain, 1988; Sinsheimer & Holland, 1987; Sutherland, 1967; Wolberg, Tanner, Romsaas, Trump, & Malec, 1987). Thus, prime targets for study have been questions such as the extent to which the breast-cancer patient continues to feel attractive, feminine, and sexually desirable after treatment. The focus on body image reflects an evolution in the thinking of researchers on psychological sequelae of breast cancer. In earlier years. a psychoanalytic approach domi- nated thinking about the psychological impact of breast cancer (though it should also be kept in mind that the 160 SPENCER ET AL. surgical treatment itself was far more severe than it is now——cf. Holland & Rowland, 1987). The assumption at that time was that a woman with breast cancer confronted a challenge to her identity as a feminine being (Polivy, 1977). Today, discussions of the impact of body image focus more on perceptions of physical disfigurement per se and a consequent loss of confidence about relations with signifi— cant others. The assumption that women with breast cancer have special concerns about body image is certainly a reasonable one. However, there is surprisingly little systematic evi- dence about how such concerns rank among the many concerns possible. 15 body image the key concern among early-stage breast-cancer patients? If not. what concerns are focal? Several sources of indirect evidence exist. Studies have assessed problems cancer patients experience at vari- ous phases of their treatment (e.g., Freidenbergs, Gordon. Hibbard, & Diller. 1980; Ganz, Polinsky. Schag, & Heinrich. 1989; Meyerowitz, Sparks, & Spears, 1979; Mor. Malin, & Allen. 1994). However, these studies tend to focus on current impact of the treatment on practical domains of life—for example, dissatisfactions with medical services, problems doing housework. financial problems, and disrup- tion of daily routine and family activities. They provide little information on concerns outside those realms. One study that does provide such information was con- ducted some time ago by Gotay (198-1). She interviewed early—stage gynecological patients (within 2 weeks after diagnosis) and later—stage gynecological and (mostly) breast- cancer patients. Participants were asked to specify their concerns and to describe what they were doing about the concerns. Gotay found that the greatest concern expressed was the possibility of progression or recurrence of the cancer. Among the early—stage gynecological patients, the ability to bear children in the future was the second most common. followed by concerns about effects of the illness on their jobs. Among more advanced patients, fear of progression was matched by concerns about restrictions on activities and about side effects of treatments. In both groups. concern about being able to handle the emotional distress was also commonly mentioned. These findings are valuable, but they have important limitations. First, the breast—cancer patients in this sample were Stage III and IV patients, in whom concern about progression, physical debilitation. and side effects of treat- ment would be expected to be especially high. The early— stage patients were gynecological patients. whose concerns may differ from those of breast—cancer patients. Second, the assessment of these early-stage gynecological patients took place very shortly after diagnosis, when the shock of having been diagnosed with cancer was at its peak. It is unclear whether the concerns of these patients may have shifted across the months after diagnosis, as they adapted to the knowledge of their diagnosis, treatment, and favorable prognosis. Third. ethnic minority groups were not well represented in this study. or for that matter in other research relevant to the concerns of breast—cancer patients. The study reported here was undertaken, in part, to provide further information about what concerns are stron- gest in the minds of early-stage breast-cancer patients during the first year posttreatment. To do this, we surveyed a tri-ethnic sample of patients. all of whom had had surgery within the prior year. They rated the extent to which they were concerned about each of a series of issues that were presented to them, permitting us to compare the degree of concern across domains. We report here the overall profile of concerns and differences between ethnic subgroups. Knowing what concerns are salient is important, but it is also important to know which concerns relate most to distress. That is, a given concern may be salient but fail to have an impact on feelings of well-being. A relatively low-level concern may have a strong link to well-being. Accordingly, we also report associations betWeen the con- cerns reported and several indicators of subjective well- being. Method Participants Participants were 223 women with early-stage breast cancer. recruited through several Miami-area hospitals and practices. In most cases. recruitment began with a letter from the woman's physician to her. which introduced the study and asked her to consider participating in it (in some cases the study was introduced during an office visit). Letters were sent to all early-stage breast- cancer patients these physicians had treated within the past year. The letter was accompanied by a more concrete description of what would be involved in participating. Those interested returned the bottom of that page by mail to indicate when and where they might be reached by phone. Female graduate students called them. explained the study in more detail. and (for all who wished to participate) mailed the women informed consent forms and ques- tionnaire packets. Each participant was paid $40 upon return of the packet. The final participation rate of women initially contacted by letter was approximately 80%. The patients under study were diagnosed with either Stage 0 (n = 10), Stage I (n = 128), or Stage II (n = 85) breast cancer. Approximately a third of the women (74) reported a positive family history for breast cancer. Nodal involvement ranged from O to 21 (M = 0.86, SD = 2.67). Most were English speakers, though a few of the participants completed the questionnaires in Spanish (71 = 13; preliminary analyses revealed that outcome variables did not differ by language of administration). No participant had a positive psychiatric history, prior cancer, or major concurrent disease. Most of the women were married or in an equivalent relationship (157); 29 were separated or divorced. 24 were widowed. and 13 were single. The majority of the women were non-Hispanic White (151), 48 were Hispanic, and 24 were African Americans. The women had completed an average of 14.39 years of education ( SD = 2.80). Ninety-eight were currently employed full time, 20 were employed part time, and 105 were not currently working outside the home. Because the data collection had been funded by a project with a focus on the special concerns of younger breast- cancer patients, the sample was heavily weighted with younger patients, ranging in age from 27 to 87 (M = 53.75. SD = 12.62). Seventy-eight of the women had modified radical mastectomies. 9 had bilateral mastectomies. and 136 had lumpectomies (tumor excision). Fifty of the women had undergone reconstruction. Three coding options were used for each adjuvant treatment assessed: “no.“ “yes but not in the past 4 weeks." and "yes in the past 4 weeks." On these items, 137 reported radiation therapy (46 in the CONCERNS OF BREAST-CANCER PATIENT S past 4 weeks). 84 reported chemotherapy (29 in the past 4 weeks). and 83 were receiving tamoxifen. An attempt was made to recruit women who varied in the amount of time that had passed since their surgery. to ascertain whether the passage of time (and involvement in. vs. completion of. adjuvant therapy) would have an influence on the profile of concerns women reported. For this purpose. we established selec- tion windows at 3. 6, and 12 months postsurgery. Time since surgery varied as much as a month in either direction from the target date except for the 3-month window. for which the lower bound was only 2 weeks prior to the 3-month mark. Women in the 3-month window numbered 69, 72 were in the 6-month window, and 82 were in the 12-month window. Psychosocial Measures Profile of concerns. The measure of participants’ concerns was the Profile of Concerns about Breast Cancer (PCBC), created for this study. It consists of 28 items. each naming a specific potential concern stemming from the diagnosis or medical treatment. The items were written by members of the research team. partly on the basis of the existing psychooncology literature and partly on the basis of years of first-hand experience with breast-cancer patients. An attempt was made to cover a diverse range of potential concerns. The items are listed in Table 1. The introduction to the PCBC said that many sorts of things go through people's minds when they confront any illness, including breast cancer. The respondent was to indicate how concerned she was about each of this list of issues. She was asked not to respond according to how she had felt at the moment she found out she had Table 1 161 breast cancer but according to how she has felt for the last few days, including today. Response options ranged from 1 (not at all concerned) to 5 (extremely concerned). Another option indicated the concern was not applicable (e.g.. a concern about not seeing children grow up would not apply to someone whose children were already grown). Women were also given the opportunity to enter specific concerns not named in the list and to rate those concerns along with the ones that had been provided. Of the 223 women in the sample, 45 (20%) added at least one concern. The concerns that the women added were of real importance to them: The majority were rated as “extremely concerned." Although many of the concerns added by participants could be viewed as more focused restatements of concerns already on the list. some were new. Concerns expressed with some frequency in this way were concerns about hair loss, difficulty of obtaining health insurance in the future, the possibility of an error in diagnosis, and financial issues such as loss of a business because of time spent away from work. Emotional adjustment. Emotional distress was assessed by three measures. The first was the abbreviated version of the Profile of Mood States (POMS; McNair, Lorr. & Droppelman. 1981) used in our earlier research (Carver et al.. 1993). The POMS assesses several emotions. It consists of a series of adjectives, each a mood descriptor. Respondents in this study indicated the extent to which they had had the feeling described for the past week including today, using response choices that ranged from 1 (not at all) to 5 (extremely). An index of the responses made to items reflecting anxiety. anger. and depression (or = .90) was one measure of emotional adjustment. A second measure of emotional adjustment was the Center for Items of Profile of Concerns About Breast Cancer in Order Administered and Overall Sample Means (Response Options Range From I [not at all] to 5 [extremely]) As you think about your illness. how much are you concerned . . . M SD 1. that you won‘t be able to get a better job ( or be promoted) if they know you had cancer. 1.98 1.43 2. that you won’t be given the raises you deserve because of your illness. 1.65 1.21 3. that the bills from the treatment will be overwhelming. 2.38 1.43 M 4. that you won‘t be able to have children. 1.79 1.42 5. that you won’t see your children grow up. 2.52 1.51 M 6. that your partner (or a potential new partner) will reject you because of the tumor or your treatment. 1.57 1.13 L 7. that your children will become less affectionate or less loving with you. 1.14 0.59 L 8. that your family will become angry with you. 1.12 0.51 L 9. that you will argue more with your partner. 1.39 0.88 L 10. that the treatment will make you feel less feminine. less like a woman. 1.71 1.21 11. that the treatment will make you less desirable sexually. 1.86 1.30 12. that the various treatments will make you less likely to have sexual feelings. 1.92 1.27 13. that people won't think you look as good as you did. 1.62 1.06 L 14. that your friends will avoid you. 1.21 0.68 L 15. that people at work won’t want to interact with you. 1.26 0.78 L 16. that your friends will act as though your disease is contagious. 1.12 0.59 L 17. that chemotherapy or radiation therapy will make you sick. 2.79 1.46 M 18. that chemotherapy or radiation therapy will damage your body in some way. 2.87 1.40 M 19. that you‘ll undergo an early menopause. 2.08 1.43 20. that you may die soon. 2.22 1.24 M 21. that you won‘t be able to go places you want to go and do things you want to do. 1.94 1.28 22. that you will always feel physically damaged from this disease. 2.02 1.24 23. that your life with your partner will be cut short. 2.11 1.22 M 24. that the cancer may come back. 3.14 1.35 M 25. that you will lose your sense of independence/5elf-sufficiency. 2.31 1.39 M 26. that others perceive you as less strong, fit. and healthy than before you were diagnosed with breast cancer. 1.82 1.18 27. that physical pain might come from your illness or its treatment. 2.32 1.31 M 28. that you might become dependent on or addicted to drugs or medications. 1.53 1.05 L Note. N differs from item to item. as some items were not applicable to all participants. M = most—endorsed items; L = least—endorsed items. 162 SPENCER ET AL. Epidemiologic Studies Depression scale (CES—D: Radloff. 1977). The CES-D measures a range of cognitive. affective. motivational, and somatic symptoms (for data on validity, see Myers & Weiss- man, 1980: Schulberg et al.. 1985). Instructions to the respondent are to indicate the extent to which she has had a variety of experiences (framed as “1" sentences). in this case within the past week. Options for responding range from 0 (rarely or none of the time) to 3 (most or all of the time). Our third measure of emotional adjustment was the extent to which the woman reported feeling a positive quality of life in her day-to—day experiences. Because our focus was on patients who have few physical symptoms. we did not assess cancer-specific aspects of quality of life but aspects of general quality of life. We selected 11 items from Andrews and Withey (1976) that address a reasonable range of the life activities. Respondents considered each item’s content and indicated how they felt about that domain of life. on a scale ranging from 1 (terrible) to 7 (delighted). This brief measure (which has high internal reliability, or = .89) was used in our earlier breast-cancer research (Carver et a1.. 1994). Preliminary analysis indicated that the three measures just described were fairly strongly correlated with one another (inter- scale rs ranged from .62 to .75, standardized ct after reversing the coding for quality of life = .87). For this reason. the three measures were merged into an index of emotional distress, by standardizing responses to each of the measures and averaging the z scores. Psychosexual adjustment. Psychosexual well—bein...
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