Quality of Life Among Younger Women With Breast Cancer
http://www.100md.com
《临床肿瘤学》
the Wake Forest University School of Medicine, Department of Public Health Sciences, Winston-Salem, NC
University of Massachusetts Medical School, Division of Preventive and Behavioral Medicine, Worcester, MA
ABSTRACT
PURPOSE: To describe quality of life (QOL) of younger women 4 to 42 months after breast cancer diagnosis and to identify factors associated with impaired QOL.
METHODS: A total of 202 women diagnosed with stage I to III breast cancer at age 50 or younger from 4 to 42 months after breast cancer diagnosis previously completed a mailed survey. Global QOL; health-related QOL as measured by the Functional Assessment of Cancer Therapy–Breast Cancer (FACT-B); medical history; symptoms; days of work/activity missed after diagnosis; relationship, sexual, and body image problems; coping strategies; and feelings of preparedness were measured.
RESULTS: General aches and pains and unhappiness with appearance were reported by more than 70% of women. Hot flashes (P = .0007), pain with sexual intercourse (P = .02), and difficulty with bladder control (P = .002) all significantly increased with age. Global QOL was significantly lower than for a nonpatient sample of younger women (P < .0001). In general, few sociodemographic and medical factors were related to QOL. In multivariate analyses, days of work/usual activity missed immediately after diagnosis; relationship, sexual, or body image problems after diagnosis; and coping strategies were related to almost all QOL domains. Ongoing treatment, vaginal dryness, and feeling unprepared for the impact of breast cancer were related to some domains.
CONCLUSION: Younger breast cancer survivors are at risk for impaired QOL up to several years after diagnosis. Younger women, especially those at high risk for lower QOL, may need interventions that specifically target their needs related to menopausal symptoms and problems with relationships, sexual functioning, and body image. Preparing younger woman for the impact of breast cancer may also prove beneficial.
INTRODUCTION
Breast cancer is the most common cancer among women in the United States, with an estimated 211,240 new cases of invasive breast cancer expected to occur among women in 2004.1 It is estimated that 26.4% of all newly diagnosed breast cancer cases occur among women younger than age 50.2 With increasing absolute numbers of younger women diagnosed with breast cancer and declining mortality rates in this age group,3,4 younger women are a growing group of breast cancer survivors. Recently there has been increased interest in studying this younger age group.5-7
Interest in younger women is also heightened by studies showing that younger women have greater psychological morbidity and poorer quality of life (QOL) after breast cancer diagnosis than older women.8-14 Particular problems for younger women are likely to include survival concerns for those with young children; concern about having children when faced with a life-threatening illness; premature menopause leading to loss of fertility, sudden onset of vasomotor symptoms, and long-term consequences of early ovarian decline; concerns about whether a subsequent pregnancy would alter their risk of recurrence; concerns about body image and sexuality; concerns about career and work; feeling unable to change jobs or fearing loss of a job because of insurance; and uncertainty of disease relapse.12,15-18
The investigation reported here is part of a larger program of research designed to address the psychosocial needs of women diagnosed with breast cancer at age 50 or younger. As part of this research, we conducted a cross-sectional survey of women diagnosed with breast cancer at age 50 or younger within the last 3.5 years. We have previously reported on the concerns and problems faced by these women: we found that premature menopause, sexual functioning, and body image were particular concerns.15 The aims of this article are threefold: to describe the QOL of younger women who are 4 to 40 months after diagnosis; to determine the contribution of sociodemographic, medical, and psychosocial factors to QOL; and to identify potential risk factors for impaired QOL among this important and growing group of breast cancer survivors. We conceptualize QOL as a subjective multidimensional concept that includes physical, emotional, social, and functional well-being.19 On the basis of previous research,7,20-24 we hypothesize that symptoms and psychosocial factors will be more associated with QOL than medical factors.
METHODS
Participants
Women diagnosed with breast cancer within the last 3 years were recruited from six hospitals in the Greater Boston and New Hampshire areas. We recruited women within 3 years of diagnosis and allowed an additional 6 months for obtaining consent, and mailing and receipt of survey. The institutional review boards of all institutions involved reviewed and approved the protocol. Each institution reviewed its medical records and identified all women who were diagnosed with their first breast cancer in the previous 3 years, were at least 4 months after diagnosis, and were age 50 years at the time of diagnosis. Only women who had stage I, II, or III breast cancer were included.
Procedure
After obtaining permission from patients and their treating physicians to release their names to the New England Research Institutes (with which the first two authors were affiliated at the time the research was conducted), hospitals forwarded patient names and addresses to the New England Research Institutes. Women were sent a cover letter describing the study, along with the survey instrument and a postage-paid return envelope. After 2 weeks, the survey was remailed to those who had not returned their survey. Patients who did not return their surveys after two attempts were contacted by telephone.
Measures
Health-related QOL. The Functional Assessment of Cancer Therapy–Breast Cancer (FACT-B)25 was used to assess health-related QOL. The FACT-B consists of the following subscales: physical well-being (PWB), functional well-being (FWB), emotional well-being (EWB), social/family well-being (SWB), and breast cancer–specific concerns (BCS). A total FACT-B score is calculated by summing the subscales. The instrument has a total of 41 items asking respondents to rate how true each statement is for the last 7 days. Response scales range from 0 (not at all) to 4 (very much). The FACT has been shown to have high internal consistency reliability and has been well validated.19,25
Global QOL. Women rated their global QOL using a single-item measure called the Ladder of Life.26,27 Respondents are shown a stepladder with rungs from 1 to 10, where 1 represents the worst possible life and 10 represents the best possible life, and asked to circle the number that represents how they feel at the present time. The Ladder of Life has been used with variations by others28-31 and global ratings of this sort have been shown to be good summary measures of QOL.32
Medical history. Medical/treatment variables were type of initial surgery (lumpectomy, mastectomy, reconstruction) and type of treatment (chemotherapy, radiation, hormonal), current treatment, and recurrence. Other questions inquired about age at diagnosis, time since diagnosis, and time since end of treatment.
Symptoms. Women were given a list of 15 symptoms and asked to rate how bothered they had been by each symptom in the last 4 weeks. Responses ranged from 1 (not at all) to 5 (very much). These symptoms were derived from the Breast Cancer Prevention Trial Symptom Checklist.33,34 Symptoms included in the present analyses were hot flashes, difficulty with bladder control when laughing or crying, difficulty with bladder control at other times, vaginal dryness, pain with sexual intercourse, general aches and pains, unhappiness with appearance, and weight gain.
Days of work/usual activity missed. To measure response to diagnosis, we asked how many days of work or usual activity the woman missed in the first 3 months after her diagnosis.
Problem areas. Problem areas were assessed with selected subscales from the Cancer Rehabilitation Evaluation System (CARES),35 a multidimensional self-administered instrument containing multiple problem areas. Respondents rate each problem statement on a 5-point scale, where 0 = not at all, 1 = a little, 2 = a fair amount, 3 = much, and 4 = very much. The CARES has well-documented reliability, validity, and internal consistency, and is acceptable to patients.32,36 Because of the length of the full CARES, we administered only those subscales of particular interest for younger women and not covered by other measures in the survey (particularly the FACT). These included the marital and sexual scales and the body image subscale. The marital scale includes five subscales (communication with partner, affection with partner, interaction with partner, neglect by partner, and overprotection). The sexual scale included two subscales: sexual interest and sexual dysfunction.
The standard CARES asks patients to rate each statement in terms of how much it applies in the last month. Because we were interested in any problems experienced since diagnosis, the CARES was rephrased to ask women to rate how much of a problem each item was at any time since their breast cancer diagnosis. Partner-related areas were recoded into three categories: no partner since diagnosis (ie, not applicable), low problem level (less than or equal to the median score for women with a partner at any time since diagnosis), and high problem level (greater than the median score).
Coping. Thirty-two items from the Ways of Coping–Cancer Version developed by Dunkel-Schetter37 were used to assess coping strategies. This measure and our modification are described in detail elsewhere (Manuel et al, submitted for publication). Study participants were asked to indicate how often they had used each of the strategies in the last 6 months in attempting to cope with the most stressful part of their breast cancer. A factor analysis revealed seven scales or coping strategies: seeking and using social support, keeping feelings to self, using positive cognitive restructuring, using wishful thinking, making changes, spirituality, and detachment.
Preparedness. Three items assessed feelings of preparedness for coping with breast cancer: how well prepared patients were for the impact of cancer on their relationships, how they might feel about their appearance after surgery, and availability of counseling or support groups. A factor analysis revealed high internal consistency among the items (Cronbach's = .79) that were summed to provide a single measure.
Sociodemographic variables. Included in the survey were questions about current marital/partner status, income, education, age, and employment status.
Statistical Methods
Characteristics of the sample were summarized using tabulations for categoric factors, and means and standard deviations for continuous variables. QOL outcomes were compared with corresponding means from the literature using two-sample t tests. Differences in symptom prevalence by age group were tested using 2 statistics. A multivariate linear regression model was estimated separately for each QOL outcome, including all factors (sociodemographic and medical, problems, days of missed activities, preparedness, and coping) as candidate predictors, and using backward elimination. Results from including all predictors in the model, from forward selection, and from stepwise elimination were similar (results not presented). Model fit was confirmed by residual analyses38 and collinearity diagnostics.39
RESULTS
Sample
A total of 264 names were referred and 218 women completed the survey for a response rate of 83%; 188 interviews were self-administered and 30 were administered by telephone interview. Sixteen women were omitted from analysis because of ineligibility or incomplete data, yielding an analytic sample of 202 women. Sample characteristics are presented in Table 1. Women were between the age of 25 and 50 years at diagnosis (mean, 41.6 years). Mean age at survey completion was 43.5 years. Most study participants were white (96%). A high percentage (81%) were currently married or partnered. The women were relatively well educated; more than half had some college or a college degree and 27% had some graduate education.
Forty-three percent of women had an initial mastectomy and more than half of these women had reconstruction. Seventy-five percent reported initial chemotherapy and 70% had radiation initially (some women had both). Time since diagnosis ranged from 4 to 42 months (mean, 23 months). Eleven women reported a recurrence since initial diagnosis. The average number of days of work or usual activity missed in the first 3 months after diagnosis was 29 days, although this number varied widely, with 7% of the women reporting missing no days, 63% missing 1 to 30 days, 18% missing 31 to 89 days, and 12% missing a full 3 months.
QOL
The distribution of responses for the FACT-B and Ladder of Life are shown in Table 2. FACT-B scores were compared with a similar group of breast cancer patients diagnosed at age younger than 50 who had recently completed treatment.8 Mean scores in the two studies were similar for FWB and EWB. Our sample had higher PWB, as would be expected with increasing time since treatment, but reported significantly lower SWB than that of Wenzel et al.8
The mean overall QOL rating on the Ladder of Life was 7.2, with half of the sample rating their QOL as 8 or higher and 6.6% of women rating their current QOL as 4 or lower on a 10-point scale. Comparing these scores with those in a nonpatient sample of women age 40 to 55 from the Study of Women's Health Across the Nation (SWAN),28 breast cancer survivors had significantly lower mean QOL than SWAN participants based on a two-sample t test. Categorized distributions also were significantly different, with considerably fewer women with breast cancer rating their QOL as excellent (9 or 10), and considerably more rating their QOL as moderate or low, compared with the nonpatient sample. The mean Ladder of Life score was only slightly lower than the 7.4 reported by Ganz et al30 in their study of women diagnosed with breast cancer at age 50 or younger. QOL analyses by the same age groupings as in Ganz et al found no significant differences in QOL by age.
Table 3 presents the percentage of women reporting symptoms by age group. Hot flashes (P < .0001), difficulty with bladder control (P = .0007), and pain with sexual intercourse (P = .02) all significantly increased with age. Overall, unhappiness with appearance (77.5%) and general aches and pains (72.5%) were the most prevalent symptoms, followed by hot flashes (62.2%).
Factors Related to QOL
Table 4 presents the multivariate regression models for each domain of the FACT and global QOL. As expected, sociodemographic and treatment variables were only somewhat associated with QOL, whereas psychosocial variables showed greater and more consistent associations with QOL. Age, chemotherapy, and time since diagnosis were not related to any of the outcomes. Lower PWB was related to not being employed, ongoing treatment, recurrence, vaginal dryness, relationship problems, missing days work or usual activity after diagnosis, and wishful thinking. Lower EWB was also related to not being employed, recurrence, relationship problems, missing any days after diagnosis, and wishful thinking, but also not using cognitive restructuring. Lower SWB was associated with not being in a relationship since diagnosis and relationship problems, but also missing any days after diagnosis, not being prepared, and not using cognitive restructuring. Not being employed, ongoing treatment, sexual function problems, missing activities for 3 months, keeping to self, and not using positive cognitive restructuring were associated with lower FWB. A lower BCS score was associated with ongoing treatment, more relationship and body image problems, missing more than 1 month of work, and wishful thinking.
Lower total FACT scores were associated with not being employed, ongoing treatment, vaginal dryness, relationship problems, body image problems, missing 3 months of activities after diagnosis, wishful thinking, and not using positive cognitive restructuring.
Lower global QOL was associated with no relationship since diagnosis, recurrence, relationship problems, problems with sexual function, not feeling prepared, use of wishful thinking, and less use of the coping strategies positive cognitive restructuring and making changes. The major differences between total FACT scores and global QOL are that specific cancer factors such as receiving treatment, vaginal dryness, body image problems, and missing activities after diagnosis are related to the FACT, but not global QOL. Although recurrence was only significantly related to global QOL, this could be due in part to the small number of women with a recurrence and the nature of the FACT and Ladder of Life scales.
Figures 1 and 2 show adjusted mean QOL scores for women by relationship problems (Fig 1) and days of usual activity missed after diagnosis (Fig 2). Women with high relationship problems (45.4% of the sample) scored worse on the PWB and EWB, BCS, and global QOL scales than women with no partner (11.7%). Women who had low relationship problems had higher SWB, but otherwise did not differ from women with no partner. Women who missed usual activities for the entire 3 months after diagnosis had lower QOL on all domains. Women who missed any work or usual activity after diagnosis had lower SWB and EWB than those missing none.
DISCUSSION
Research has consistently shown that younger women report greater psychological morbidity than older women after a breast cancer diagnosis. Given the growing numbers of younger women diagnosed with breast cancer, interest in this group has heightened, with several recent studies focusing specifically on younger women.5-7,15,40 In this study, we examined QOL among women diagnosed with breast cancer at age younger than 50, and confirmed findings that younger women report more symptoms and have lower QOL than women without breast cancer.
Global QOL as assessed by the Ladder of Life was similar to that found by Ganz et al7 in a similar age group and lower than in a nonpatient sample of women age 40 to 52, suggesting that some problems associated with breast cancer continue to persist several years after diagnosis, at least for some women. Kroenke et al42 also found that women 40 years of age with breast cancer experienced significantly greater declines in physical roles, bodily pain, social functioning, and mental health compared with women without breast cancer. Although more studies are needed to compare breast cancer survivors with controls without breast cancer, these findings suggest that younger women diagnosed with breast cancer face significant QOL issues that may last past diagnosis.
Our findings with respect to symptoms were strikingly similar to those found by Ganz et al,7 and confirm a high degree of symptom reporting. The prevalence of hot flashes, difficulty with bladder control, vaginal dryness, and stiffness and soreness were all higher than similarly aged women without breast cancer in community-based cohorts of women such as SWAN42 and the Melbourne Women's Midlife Health Project.43 Particularly bothersome symptoms were those associated with menopause. This confirms other reports that menopause associated with breast cancer treatment is a particular issue for younger women.10,15,44 Although we did not measure menopausal status, the importance of vaginal dryness confirms that premature menopause is a significant factor for younger women.
As found by other studies, few sociodemographic and medical factors were related to QOL. In contrast, psychosocial factors were consistently related to QOL. More problems in terms of partner relationships, sexual functioning, and body image, and less adaptive coping strategies were related to overall QOL. These results provide additional insight into reasons younger women may have a harder time adjusting to breast cancer. Relationship, sexual functioning, and body image issues may be particularly salient for younger women and should be areas targeted for future interventions. Relationship problems are particularly noteworthy because they were related to almost all QOL domains. Previous analyses found that communication issues were the most problematic relationship concerns.15 This suggests that interventions targeted toward helping women talk with their partners or interventions targeted to the couple or partner might be particularly beneficial. The importance of coping strategies has been reported in many studies20-23,38,45-47 and some have suggested that younger women may use less adaptive coping strategies.48 Younger women who have not been faced with a disruptive and potentially life-threatening illness may need help with the development of coping skills. Furthermore, younger women may have greater time commitments and need help in a less intensive format than that used by others.5
One of the most important variables consistently related to QOL was the number of days of work or usual activity missed in the 3 months after diagnosis. Those who reported missing all 3 months had lower QOL (compared with those who did not miss any days) on all domains. This variable was unrelated to any of the medical variables or to employment status. This measure is possibly associated with depression at the time of diagnosis and this should be investigated further; we are currently addressing this issue in another study. Although from the current study we do not know the reasons that women missed work or a usual activity, this is clearly a potential risk factor for lower QOL.
How prepared women felt they were for dealing with having breast cancer also was related to QOL. We believe these results suggest that more information related to the possible emotional, social, and psychological effects of a breast cancer diagnosis would be beneficial to younger women. Although women receive much information on treatment options and procedures, often they are not prepared for how they might feel about themselves or how a cancer diagnosis may influence their relationships. A study by Kerr et al49 found that breast cancer patients younger than age 50 years rated social and psychological help as more important than did older patients. Younger patients were also less satisfied with the information they received, which suggests that younger women may be in particular need for information about the psychosocial sequelae of breast cancer. Future research should explore this area in more detail, as well as the optimal timing and mode of delivery for such interventions.
This study has a number of clinical implications. Problems with vaginal dryness and sexual functioning were related to QOL. Research from SWAN has found that 76% of women in this age group consider sex at least moderately important.51 Women may be reluctant to initiate discussions about these issues and the subjects should be brought up by clinicians. A number of nonsystemic products are available to alleviate vaginal dryness and should be considered. There are also a number of programs to help women deal with body image concerns. For example, the Cosmetic and Fragrance Association has programs to help women deal with effects of chemotherapy, and women need to be made aware of these programs. Although patients may receive information related to their surgery and other treatment, other more socio-emotional areas are often neglected. Preparing women for the social and psychological effects of cancer may also be beneficial. Involving partners in patient consultations may help communication.
This study has several limitations. Questions on days of missed work/activity and preparedness at the time of diagnosis were asked retrospectively. Although women may not be able to remember the exact number of days missed, they are likely to be able to report whether they missed only a few days or many days. Questions on breast cancer treatment were based on retrospective self-report. Because the data are cross sectional, one cannot always determine the temporal ordering of associations. Women were asked about problem areas experienced since diagnosis, so we do not know at what point these problems occurred, how long they lasted, or if they were still problems. Nevertheless, this research suggests several risk factors to identify women in need of intervention. Another limitation is that we did not include other important variables such as social support, menopausal status, fertility concerns, current mood (though we did measure EWB), or fear of recurrence. Strengths of the study include the addition of several variables that might help provide insight into areas for possible intervention in this age group of breast cancer patients.
In conclusion, this research adds to the literature suggesting that younger breast cancer patients have more difficulty adjusting to breast cancer than older women and continue to have QOL deficits after diagnosis. The study by Kroenke et al41 suggested that these differences cannot be explained by more aggressive treatment. Menopausal symptoms and problems with relationships, sexual functioning, and body image might explain why younger women have greater psychological morbidity. Preparing younger women for the impact of breast cancer and helping women deal with problems may improve their QOL. Younger breast cancer survivors may be in need of interventions that specifically target these issues. Results also suggest that clinicians should monitor how women respond to their diagnosis in terms of stopping work or their usual activity. Women who stop working or their usual activity are at significantly greater risk for impaired QOL in all domains and should be targeted for intervention.
Authors' Disclosures of Potential Conflicts of Interest
The authors indicated no potential conflicts of interest.
Acknowledgment
We thank the following institutions for their help in recruiting patients: Boston University Medical Center (Marianne Prout, MD); Dana-Farber Cancer Institute (Charles Shapiro, MD); New England Baptist Hospital, New England Deaconess Hospital, and Mt Auburn Hospital (Clair Beard, MD); and New Hampshire Oncology-Hematology (Robert Friedlander, MD).
NOTES
Supported by grant No. R01 CA64716 from the National Cancer Institute.
Presented at the American Psychosocial Oncology Society Meeting, Orlando, FL, January 29-February 1, 2004.
Authors' disclosures of potential conflicts of interest are found at the end of this article.
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University of Massachusetts Medical School, Division of Preventive and Behavioral Medicine, Worcester, MA
ABSTRACT
PURPOSE: To describe quality of life (QOL) of younger women 4 to 42 months after breast cancer diagnosis and to identify factors associated with impaired QOL.
METHODS: A total of 202 women diagnosed with stage I to III breast cancer at age 50 or younger from 4 to 42 months after breast cancer diagnosis previously completed a mailed survey. Global QOL; health-related QOL as measured by the Functional Assessment of Cancer Therapy–Breast Cancer (FACT-B); medical history; symptoms; days of work/activity missed after diagnosis; relationship, sexual, and body image problems; coping strategies; and feelings of preparedness were measured.
RESULTS: General aches and pains and unhappiness with appearance were reported by more than 70% of women. Hot flashes (P = .0007), pain with sexual intercourse (P = .02), and difficulty with bladder control (P = .002) all significantly increased with age. Global QOL was significantly lower than for a nonpatient sample of younger women (P < .0001). In general, few sociodemographic and medical factors were related to QOL. In multivariate analyses, days of work/usual activity missed immediately after diagnosis; relationship, sexual, or body image problems after diagnosis; and coping strategies were related to almost all QOL domains. Ongoing treatment, vaginal dryness, and feeling unprepared for the impact of breast cancer were related to some domains.
CONCLUSION: Younger breast cancer survivors are at risk for impaired QOL up to several years after diagnosis. Younger women, especially those at high risk for lower QOL, may need interventions that specifically target their needs related to menopausal symptoms and problems with relationships, sexual functioning, and body image. Preparing younger woman for the impact of breast cancer may also prove beneficial.
INTRODUCTION
Breast cancer is the most common cancer among women in the United States, with an estimated 211,240 new cases of invasive breast cancer expected to occur among women in 2004.1 It is estimated that 26.4% of all newly diagnosed breast cancer cases occur among women younger than age 50.2 With increasing absolute numbers of younger women diagnosed with breast cancer and declining mortality rates in this age group,3,4 younger women are a growing group of breast cancer survivors. Recently there has been increased interest in studying this younger age group.5-7
Interest in younger women is also heightened by studies showing that younger women have greater psychological morbidity and poorer quality of life (QOL) after breast cancer diagnosis than older women.8-14 Particular problems for younger women are likely to include survival concerns for those with young children; concern about having children when faced with a life-threatening illness; premature menopause leading to loss of fertility, sudden onset of vasomotor symptoms, and long-term consequences of early ovarian decline; concerns about whether a subsequent pregnancy would alter their risk of recurrence; concerns about body image and sexuality; concerns about career and work; feeling unable to change jobs or fearing loss of a job because of insurance; and uncertainty of disease relapse.12,15-18
The investigation reported here is part of a larger program of research designed to address the psychosocial needs of women diagnosed with breast cancer at age 50 or younger. As part of this research, we conducted a cross-sectional survey of women diagnosed with breast cancer at age 50 or younger within the last 3.5 years. We have previously reported on the concerns and problems faced by these women: we found that premature menopause, sexual functioning, and body image were particular concerns.15 The aims of this article are threefold: to describe the QOL of younger women who are 4 to 40 months after diagnosis; to determine the contribution of sociodemographic, medical, and psychosocial factors to QOL; and to identify potential risk factors for impaired QOL among this important and growing group of breast cancer survivors. We conceptualize QOL as a subjective multidimensional concept that includes physical, emotional, social, and functional well-being.19 On the basis of previous research,7,20-24 we hypothesize that symptoms and psychosocial factors will be more associated with QOL than medical factors.
METHODS
Participants
Women diagnosed with breast cancer within the last 3 years were recruited from six hospitals in the Greater Boston and New Hampshire areas. We recruited women within 3 years of diagnosis and allowed an additional 6 months for obtaining consent, and mailing and receipt of survey. The institutional review boards of all institutions involved reviewed and approved the protocol. Each institution reviewed its medical records and identified all women who were diagnosed with their first breast cancer in the previous 3 years, were at least 4 months after diagnosis, and were age 50 years at the time of diagnosis. Only women who had stage I, II, or III breast cancer were included.
Procedure
After obtaining permission from patients and their treating physicians to release their names to the New England Research Institutes (with which the first two authors were affiliated at the time the research was conducted), hospitals forwarded patient names and addresses to the New England Research Institutes. Women were sent a cover letter describing the study, along with the survey instrument and a postage-paid return envelope. After 2 weeks, the survey was remailed to those who had not returned their survey. Patients who did not return their surveys after two attempts were contacted by telephone.
Measures
Health-related QOL. The Functional Assessment of Cancer Therapy–Breast Cancer (FACT-B)25 was used to assess health-related QOL. The FACT-B consists of the following subscales: physical well-being (PWB), functional well-being (FWB), emotional well-being (EWB), social/family well-being (SWB), and breast cancer–specific concerns (BCS). A total FACT-B score is calculated by summing the subscales. The instrument has a total of 41 items asking respondents to rate how true each statement is for the last 7 days. Response scales range from 0 (not at all) to 4 (very much). The FACT has been shown to have high internal consistency reliability and has been well validated.19,25
Global QOL. Women rated their global QOL using a single-item measure called the Ladder of Life.26,27 Respondents are shown a stepladder with rungs from 1 to 10, where 1 represents the worst possible life and 10 represents the best possible life, and asked to circle the number that represents how they feel at the present time. The Ladder of Life has been used with variations by others28-31 and global ratings of this sort have been shown to be good summary measures of QOL.32
Medical history. Medical/treatment variables were type of initial surgery (lumpectomy, mastectomy, reconstruction) and type of treatment (chemotherapy, radiation, hormonal), current treatment, and recurrence. Other questions inquired about age at diagnosis, time since diagnosis, and time since end of treatment.
Symptoms. Women were given a list of 15 symptoms and asked to rate how bothered they had been by each symptom in the last 4 weeks. Responses ranged from 1 (not at all) to 5 (very much). These symptoms were derived from the Breast Cancer Prevention Trial Symptom Checklist.33,34 Symptoms included in the present analyses were hot flashes, difficulty with bladder control when laughing or crying, difficulty with bladder control at other times, vaginal dryness, pain with sexual intercourse, general aches and pains, unhappiness with appearance, and weight gain.
Days of work/usual activity missed. To measure response to diagnosis, we asked how many days of work or usual activity the woman missed in the first 3 months after her diagnosis.
Problem areas. Problem areas were assessed with selected subscales from the Cancer Rehabilitation Evaluation System (CARES),35 a multidimensional self-administered instrument containing multiple problem areas. Respondents rate each problem statement on a 5-point scale, where 0 = not at all, 1 = a little, 2 = a fair amount, 3 = much, and 4 = very much. The CARES has well-documented reliability, validity, and internal consistency, and is acceptable to patients.32,36 Because of the length of the full CARES, we administered only those subscales of particular interest for younger women and not covered by other measures in the survey (particularly the FACT). These included the marital and sexual scales and the body image subscale. The marital scale includes five subscales (communication with partner, affection with partner, interaction with partner, neglect by partner, and overprotection). The sexual scale included two subscales: sexual interest and sexual dysfunction.
The standard CARES asks patients to rate each statement in terms of how much it applies in the last month. Because we were interested in any problems experienced since diagnosis, the CARES was rephrased to ask women to rate how much of a problem each item was at any time since their breast cancer diagnosis. Partner-related areas were recoded into three categories: no partner since diagnosis (ie, not applicable), low problem level (less than or equal to the median score for women with a partner at any time since diagnosis), and high problem level (greater than the median score).
Coping. Thirty-two items from the Ways of Coping–Cancer Version developed by Dunkel-Schetter37 were used to assess coping strategies. This measure and our modification are described in detail elsewhere (Manuel et al, submitted for publication). Study participants were asked to indicate how often they had used each of the strategies in the last 6 months in attempting to cope with the most stressful part of their breast cancer. A factor analysis revealed seven scales or coping strategies: seeking and using social support, keeping feelings to self, using positive cognitive restructuring, using wishful thinking, making changes, spirituality, and detachment.
Preparedness. Three items assessed feelings of preparedness for coping with breast cancer: how well prepared patients were for the impact of cancer on their relationships, how they might feel about their appearance after surgery, and availability of counseling or support groups. A factor analysis revealed high internal consistency among the items (Cronbach's = .79) that were summed to provide a single measure.
Sociodemographic variables. Included in the survey were questions about current marital/partner status, income, education, age, and employment status.
Statistical Methods
Characteristics of the sample were summarized using tabulations for categoric factors, and means and standard deviations for continuous variables. QOL outcomes were compared with corresponding means from the literature using two-sample t tests. Differences in symptom prevalence by age group were tested using 2 statistics. A multivariate linear regression model was estimated separately for each QOL outcome, including all factors (sociodemographic and medical, problems, days of missed activities, preparedness, and coping) as candidate predictors, and using backward elimination. Results from including all predictors in the model, from forward selection, and from stepwise elimination were similar (results not presented). Model fit was confirmed by residual analyses38 and collinearity diagnostics.39
RESULTS
Sample
A total of 264 names were referred and 218 women completed the survey for a response rate of 83%; 188 interviews were self-administered and 30 were administered by telephone interview. Sixteen women were omitted from analysis because of ineligibility or incomplete data, yielding an analytic sample of 202 women. Sample characteristics are presented in Table 1. Women were between the age of 25 and 50 years at diagnosis (mean, 41.6 years). Mean age at survey completion was 43.5 years. Most study participants were white (96%). A high percentage (81%) were currently married or partnered. The women were relatively well educated; more than half had some college or a college degree and 27% had some graduate education.
Forty-three percent of women had an initial mastectomy and more than half of these women had reconstruction. Seventy-five percent reported initial chemotherapy and 70% had radiation initially (some women had both). Time since diagnosis ranged from 4 to 42 months (mean, 23 months). Eleven women reported a recurrence since initial diagnosis. The average number of days of work or usual activity missed in the first 3 months after diagnosis was 29 days, although this number varied widely, with 7% of the women reporting missing no days, 63% missing 1 to 30 days, 18% missing 31 to 89 days, and 12% missing a full 3 months.
QOL
The distribution of responses for the FACT-B and Ladder of Life are shown in Table 2. FACT-B scores were compared with a similar group of breast cancer patients diagnosed at age younger than 50 who had recently completed treatment.8 Mean scores in the two studies were similar for FWB and EWB. Our sample had higher PWB, as would be expected with increasing time since treatment, but reported significantly lower SWB than that of Wenzel et al.8
The mean overall QOL rating on the Ladder of Life was 7.2, with half of the sample rating their QOL as 8 or higher and 6.6% of women rating their current QOL as 4 or lower on a 10-point scale. Comparing these scores with those in a nonpatient sample of women age 40 to 55 from the Study of Women's Health Across the Nation (SWAN),28 breast cancer survivors had significantly lower mean QOL than SWAN participants based on a two-sample t test. Categorized distributions also were significantly different, with considerably fewer women with breast cancer rating their QOL as excellent (9 or 10), and considerably more rating their QOL as moderate or low, compared with the nonpatient sample. The mean Ladder of Life score was only slightly lower than the 7.4 reported by Ganz et al30 in their study of women diagnosed with breast cancer at age 50 or younger. QOL analyses by the same age groupings as in Ganz et al found no significant differences in QOL by age.
Table 3 presents the percentage of women reporting symptoms by age group. Hot flashes (P < .0001), difficulty with bladder control (P = .0007), and pain with sexual intercourse (P = .02) all significantly increased with age. Overall, unhappiness with appearance (77.5%) and general aches and pains (72.5%) were the most prevalent symptoms, followed by hot flashes (62.2%).
Factors Related to QOL
Table 4 presents the multivariate regression models for each domain of the FACT and global QOL. As expected, sociodemographic and treatment variables were only somewhat associated with QOL, whereas psychosocial variables showed greater and more consistent associations with QOL. Age, chemotherapy, and time since diagnosis were not related to any of the outcomes. Lower PWB was related to not being employed, ongoing treatment, recurrence, vaginal dryness, relationship problems, missing days work or usual activity after diagnosis, and wishful thinking. Lower EWB was also related to not being employed, recurrence, relationship problems, missing any days after diagnosis, and wishful thinking, but also not using cognitive restructuring. Lower SWB was associated with not being in a relationship since diagnosis and relationship problems, but also missing any days after diagnosis, not being prepared, and not using cognitive restructuring. Not being employed, ongoing treatment, sexual function problems, missing activities for 3 months, keeping to self, and not using positive cognitive restructuring were associated with lower FWB. A lower BCS score was associated with ongoing treatment, more relationship and body image problems, missing more than 1 month of work, and wishful thinking.
Lower total FACT scores were associated with not being employed, ongoing treatment, vaginal dryness, relationship problems, body image problems, missing 3 months of activities after diagnosis, wishful thinking, and not using positive cognitive restructuring.
Lower global QOL was associated with no relationship since diagnosis, recurrence, relationship problems, problems with sexual function, not feeling prepared, use of wishful thinking, and less use of the coping strategies positive cognitive restructuring and making changes. The major differences between total FACT scores and global QOL are that specific cancer factors such as receiving treatment, vaginal dryness, body image problems, and missing activities after diagnosis are related to the FACT, but not global QOL. Although recurrence was only significantly related to global QOL, this could be due in part to the small number of women with a recurrence and the nature of the FACT and Ladder of Life scales.
Figures 1 and 2 show adjusted mean QOL scores for women by relationship problems (Fig 1) and days of usual activity missed after diagnosis (Fig 2). Women with high relationship problems (45.4% of the sample) scored worse on the PWB and EWB, BCS, and global QOL scales than women with no partner (11.7%). Women who had low relationship problems had higher SWB, but otherwise did not differ from women with no partner. Women who missed usual activities for the entire 3 months after diagnosis had lower QOL on all domains. Women who missed any work or usual activity after diagnosis had lower SWB and EWB than those missing none.
DISCUSSION
Research has consistently shown that younger women report greater psychological morbidity than older women after a breast cancer diagnosis. Given the growing numbers of younger women diagnosed with breast cancer, interest in this group has heightened, with several recent studies focusing specifically on younger women.5-7,15,40 In this study, we examined QOL among women diagnosed with breast cancer at age younger than 50, and confirmed findings that younger women report more symptoms and have lower QOL than women without breast cancer.
Global QOL as assessed by the Ladder of Life was similar to that found by Ganz et al7 in a similar age group and lower than in a nonpatient sample of women age 40 to 52, suggesting that some problems associated with breast cancer continue to persist several years after diagnosis, at least for some women. Kroenke et al42 also found that women 40 years of age with breast cancer experienced significantly greater declines in physical roles, bodily pain, social functioning, and mental health compared with women without breast cancer. Although more studies are needed to compare breast cancer survivors with controls without breast cancer, these findings suggest that younger women diagnosed with breast cancer face significant QOL issues that may last past diagnosis.
Our findings with respect to symptoms were strikingly similar to those found by Ganz et al,7 and confirm a high degree of symptom reporting. The prevalence of hot flashes, difficulty with bladder control, vaginal dryness, and stiffness and soreness were all higher than similarly aged women without breast cancer in community-based cohorts of women such as SWAN42 and the Melbourne Women's Midlife Health Project.43 Particularly bothersome symptoms were those associated with menopause. This confirms other reports that menopause associated with breast cancer treatment is a particular issue for younger women.10,15,44 Although we did not measure menopausal status, the importance of vaginal dryness confirms that premature menopause is a significant factor for younger women.
As found by other studies, few sociodemographic and medical factors were related to QOL. In contrast, psychosocial factors were consistently related to QOL. More problems in terms of partner relationships, sexual functioning, and body image, and less adaptive coping strategies were related to overall QOL. These results provide additional insight into reasons younger women may have a harder time adjusting to breast cancer. Relationship, sexual functioning, and body image issues may be particularly salient for younger women and should be areas targeted for future interventions. Relationship problems are particularly noteworthy because they were related to almost all QOL domains. Previous analyses found that communication issues were the most problematic relationship concerns.15 This suggests that interventions targeted toward helping women talk with their partners or interventions targeted to the couple or partner might be particularly beneficial. The importance of coping strategies has been reported in many studies20-23,38,45-47 and some have suggested that younger women may use less adaptive coping strategies.48 Younger women who have not been faced with a disruptive and potentially life-threatening illness may need help with the development of coping skills. Furthermore, younger women may have greater time commitments and need help in a less intensive format than that used by others.5
One of the most important variables consistently related to QOL was the number of days of work or usual activity missed in the 3 months after diagnosis. Those who reported missing all 3 months had lower QOL (compared with those who did not miss any days) on all domains. This variable was unrelated to any of the medical variables or to employment status. This measure is possibly associated with depression at the time of diagnosis and this should be investigated further; we are currently addressing this issue in another study. Although from the current study we do not know the reasons that women missed work or a usual activity, this is clearly a potential risk factor for lower QOL.
How prepared women felt they were for dealing with having breast cancer also was related to QOL. We believe these results suggest that more information related to the possible emotional, social, and psychological effects of a breast cancer diagnosis would be beneficial to younger women. Although women receive much information on treatment options and procedures, often they are not prepared for how they might feel about themselves or how a cancer diagnosis may influence their relationships. A study by Kerr et al49 found that breast cancer patients younger than age 50 years rated social and psychological help as more important than did older patients. Younger patients were also less satisfied with the information they received, which suggests that younger women may be in particular need for information about the psychosocial sequelae of breast cancer. Future research should explore this area in more detail, as well as the optimal timing and mode of delivery for such interventions.
This study has a number of clinical implications. Problems with vaginal dryness and sexual functioning were related to QOL. Research from SWAN has found that 76% of women in this age group consider sex at least moderately important.51 Women may be reluctant to initiate discussions about these issues and the subjects should be brought up by clinicians. A number of nonsystemic products are available to alleviate vaginal dryness and should be considered. There are also a number of programs to help women deal with body image concerns. For example, the Cosmetic and Fragrance Association has programs to help women deal with effects of chemotherapy, and women need to be made aware of these programs. Although patients may receive information related to their surgery and other treatment, other more socio-emotional areas are often neglected. Preparing women for the social and psychological effects of cancer may also be beneficial. Involving partners in patient consultations may help communication.
This study has several limitations. Questions on days of missed work/activity and preparedness at the time of diagnosis were asked retrospectively. Although women may not be able to remember the exact number of days missed, they are likely to be able to report whether they missed only a few days or many days. Questions on breast cancer treatment were based on retrospective self-report. Because the data are cross sectional, one cannot always determine the temporal ordering of associations. Women were asked about problem areas experienced since diagnosis, so we do not know at what point these problems occurred, how long they lasted, or if they were still problems. Nevertheless, this research suggests several risk factors to identify women in need of intervention. Another limitation is that we did not include other important variables such as social support, menopausal status, fertility concerns, current mood (though we did measure EWB), or fear of recurrence. Strengths of the study include the addition of several variables that might help provide insight into areas for possible intervention in this age group of breast cancer patients.
In conclusion, this research adds to the literature suggesting that younger breast cancer patients have more difficulty adjusting to breast cancer than older women and continue to have QOL deficits after diagnosis. The study by Kroenke et al41 suggested that these differences cannot be explained by more aggressive treatment. Menopausal symptoms and problems with relationships, sexual functioning, and body image might explain why younger women have greater psychological morbidity. Preparing younger women for the impact of breast cancer and helping women deal with problems may improve their QOL. Younger breast cancer survivors may be in need of interventions that specifically target these issues. Results also suggest that clinicians should monitor how women respond to their diagnosis in terms of stopping work or their usual activity. Women who stop working or their usual activity are at significantly greater risk for impaired QOL in all domains and should be targeted for intervention.
Authors' Disclosures of Potential Conflicts of Interest
The authors indicated no potential conflicts of interest.
Acknowledgment
We thank the following institutions for their help in recruiting patients: Boston University Medical Center (Marianne Prout, MD); Dana-Farber Cancer Institute (Charles Shapiro, MD); New England Baptist Hospital, New England Deaconess Hospital, and Mt Auburn Hospital (Clair Beard, MD); and New Hampshire Oncology-Hematology (Robert Friedlander, MD).
NOTES
Supported by grant No. R01 CA64716 from the National Cancer Institute.
Presented at the American Psychosocial Oncology Society Meeting, Orlando, FL, January 29-February 1, 2004.
Authors' disclosures of potential conflicts of interest are found at the end of this article.
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