Quality of Life in Long-Term Survivors of Metastatic Breast Cancer

Original Study

Quality of Life in Long-Term Survivors of Metastatic Breast Cancer Jane L. Meisel,1 Susan M. Domchek,2 Robert H. Vonderheide,2 Anita Giobbie-Hurder,3 Nancy U. Lin,3 Eric P. Winer,3 Ann H. Partridge3 Abstract Little is known about the quality of life of women living long term with metastatic breast cancer. We conducted a survey of women living with metastatic breast cancer for 5 years or longer. Although overall quality of life appeared quite favorable, some women reported substantial depression and/or anxiety about their disease. Ongoing work to address the needs of this growing population is warranted. Introduction: Psychosocial distress is common after a diagnosis of breast cancer. Little is known about the psychosocial adjustment of women living long term with metastatic breast cancer. Methods: We conducted a cross-sectional survey of women living with metastatic breast cancer for 5 years or longer. The survey included demographic and medical history, the Hospital Anxiety and Depression Scale (HADS), the Revised Impact of Events Scale (IES-R), the Functional Assessment of Cancer Therapy-Breast (FACT-Breast), and the Duke-University of North Carolina (UNC) Functional Social Support (DUFSS) Questionnaire. Demographic and disease characteristics were assessed by using the Wilcoxon rank sum test and the Fisher exact test. The relationships between IES-R, DUFSS, and the HADS were assessed by using the Spearman correlation coefficients. Statistical tests were 2-sided, with significance defined as P ⱕ .05. Results: Eighteen (64%) of 28 eligible women completed the survey. Women who completed the survey were more likely to have had node-positive disease (2P ⫽ .0007), to had taken adjuvant therapy (2P ⫽ .01), and to have had hormone-receptor positive disease than women who did not (2P ⫽ .04). Among those who completed the survey, data from the FACT-Breast and the DUFSS indicated that women are physically functioning well but still face significant emotional challenges. Results from the HADS indicated that 2 (11.1%) of 18 women were depressed and that 2 (11.1%) of 18 women were anxious. Six (33%) of 18 women had scores on the IES-R Scale that indicated a powerful impact of traumatic stress on the ability to function. In the total sample of 18, the IES-R was significantly correlated with the HADS-Anxiety score (Spearman correlation, 0.81; 2P ⫽ .0002) but not with the HADS-Depression score (Spearman correlation, 0.40; 2P ⫽ .12). Conclusions: Although overall quality of life is good in this population of women living long term with metastatic breast cancer, there is a subset of women who are dealing with significant anxiety and depression, and a larger group who are experiencing burdensome sadness, hopelessness, and apprehension about their disease. Ongoing work to address the needs of this population is warranted. Clinical Breast Cancer, Vol. 12, No. 2, 119-26 © 2012 Elsevier Inc. All rights reserved. Keywords: Advanced breast cancer, Metastatic breast cancer, Quality of life, Survivorship

Introduction Breast cancer accounts for more than one-fourth of all new cancer diagnoses among women in the United States, with more than 1

Department of Medicine, Brigham and Women’s Hospital, Boston, MA Abramson Cancer Center, Hospital of the University of Pennsylvania, PA 3 Department of Medical Oncology, Dana-Farber Cancer Center, Boston, MA 2

Submitted: Jul 25, 2011; Revised: Jan 22, 2012; Accepted: Jan 25, 2012 Address for correspondence: Ann H. Partridge, MD, MPH Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA 02115 Fax: ⫹1-617-632-1930; e-mail contact: [email protected]

1526-8209/$ - see frontmatter © 2012 Elsevier Inc. All rights reserved. doi: 10.1016/j.clbc.2012.01.010

200,000 new cases estimated for the year 2010.1 It is estimated that, in 2009, approximately 40,000 women died of this disease in the United States, which makes breast cancer the second leading cause of cancer death in women.2 Worldwide, an estimated 1.1 million women are diagnosed with breast cancer, and 410,000 die of the disease each year.3 Treatment options for women with advanced breast cancer have improved in recent years, and the number of women who live longer with breast cancer is increasing. Over the 10-year period of 1987 to 1997, the annual breast cancer death rate per 100,000 women at ages 20-49, 50-69, and 70-79 years decreased by 22%, 22%, and 12%,

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119

Quality of Life in Metastatic Breast Cancer respectively, in the United Kingdom, and decreased by 19%, 18%, and 9%, respectively, in the United States.4 A 2004 study that evaluated survival in women who developed recurrent or metastatic breast cancer between 1974 and 2000 showed that a more recent date of diagnosis of metastatic disease is independently associated with increased survival.5 This trend was confirmed in a more recent study that accounted for the widespread use of newer treatments.6 Analysis of SEER (Surveillance Epidemiology and End Results) data from 1998 to 2005 suggests that 23% of women diagnosed with metastatic disease are now surviving 5 years or longer.7 As research evolves and new treatment options become available, the population of women living with metastatic disease will almost certainly continue to increase. Quality of life is an important outcome measure in all patients with breast cancer, but it becomes even more important in the metastatic population, where, with very few exceptions, cure is no longer the goal. In this setting, prolongation of survival, palliation of symptoms, and optimization of quality of life become the goals of care.8 Growing recognition of the importance of studying quality of life in metastatic disease has been reflected in the past decade by the number of clinical trials that have incorporated measures of quality of life as part of their endpoints.9-18 Many studies have examined quality of life in patients with metastatic breast cancer as it pertains to specific therapies. However, cancer-related quality of life is a complex entity, with physical, psychological, social, and sexual factors all playing a role.19 Although there are a number of studies that look at several of these factors in patients with early-stage breast cancer and in breast cancer survivors, there have been very few studies that focus on psychosocial as well as physical quality of life issues in patients with metastatic disease.20 Those studies that focused on psychosocial issues in patients with metastatic disease studied women within the first few months or years of recurrence.21-25 To begin addressing the lack of literature devoted to quality of life and psychosocial concerns in patients who are living long term with metastatic breast cancer, we surveyed a group of women who had been living with metastatic disease for 5 years or more. Our primary goal was to gain a more complete understanding of the quality of life and psychosocial issues that face this unique survivor population.

Materials and Methods Women who had been living with metastatic breast cancer for 5 years or more and who were receiving care at the Massachusetts General Hospital and the Dana Farber Cancer Institute in Boston, Massachusetts, were identified through a clinical research database or were referred by providers to participate in this cross-sectional study. Eligibility criteria included age ⱖ 18 years, the presence of a histologically or cytologically confirmed invasive breast cancer, a distant recurrence or locoregional recurrence not being treated with curative intent, and the ability to understand and the willingness to sign an informed consent. Patients were excluded who had dementia, altered mental status, or any psychiatric condition that would prohibit the understanding or rendering of informed consent. Providers were contacted before approaching patients. Patients consented to medical record review and donation of blood samples for assessment of biomarkers that might correlate with long-term survival and were asked to respond to a one-time written survey that was administered in the clinic. The study received institutional review board approval, and informed consent was obtained from study participants

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before enrollment. The results of the written survey are described here; the results of the affiliated blood and biomarker studies will be presented in a future report.

Measures Survey items were selected to reflect a broad assessment of the quality of life and psychosocial status of women living long term with advanced breast cancer. When available, validated measures were selected. The survey included sociodemographic items and disease history, including tumor characteristics and prior treatment, as well as questions specifically geared toward this study population, including age at diagnosis of metastatic disease, disease-free interval (if any), whether the patient was undergoing treatment at the time of diagnosis of metastasis, the location of the initial and subsequent sites of metastases, prior treatments for metastatic disease. The survey also asked how long the patient had been living with metastatic disease at the time of survey administration. Previously studied and/or validated instruments used included the Hospital Anxiety and Depression Scale (HADS), the Revised Impact of Events Scale (IES-R), the Functional Assessment of Cancer Therapy-Breast (FACT-Breast), the Duke-University of North Carolina (UNC) Functional Social Support (DUFSS) Questionnaire, and an assessment of complementary therapy.

HADS The HADS26 is a 14-item scale designed to detect anxiety and depression independent of somatic symptoms. It was initially piloted in a medical outpatient clinic but has since been validated in cancer patients specifically.27,28 It consists of two 7-item subscales that measure depression and anxiety. A 4-point scale (from 0 [absence of symptoms] to 3 [maximum symptoms]) is used, with possible scores for each subscale that ranged from 0 to 21 and higher scores that indicated higher levels of disorder. In the original article, the following cutoffs were suggested: 0-7 (“noncases”), 8-10 (“possible case”), and 11-21 (“probable case”) of anxiety and depression. These were the cutoffs used in the studies that validated the HADS in cancer patients as well.

IES-R IES-R29 is a widely used self-report measure of traumatic stress. Its 2 subscales reflect the core components of traumatic stress reactions: intrusion and avoidance. The scale asks about the frequency with which each symptom has occurred over the past week, with scores of 0, 1, 3, and 5 adopted for responses of “not at all,” “rarely,” “sometimes,” and “often.” Scores range from 0 to 35 for intrusion, 0 to 40 for avoidance, and 0 to 75 for the total IES. A total score of 26 or higher indicates powerful impact of traumatic stress. A score higher than 44 indicates severe impact and alters the ability to function.

FACT-Breast FACT-Breast30 is used to assess quality of life. With this validated, 36-item instrument, patients are asked to respond to statements regarding breast, emotional, functional, physical, and social well-being. The answers are scored by using a Likert scale. Patients choose the number that corresponds to how true each statement has been for them during the past 7 days. The total FACT-Breast score (including all subsections) has a range of 0 to 144, with a higher number that correlates to a more favorable quality of life. Subsections evaluate breast well-being (score range, 0-36), emotional well-being (score

Jane L. Meisel et al range, 0-24), functional well-being (score range, 0-28), physical wellbeing (score range, 0-28), and social well-being (score range, 0-28).

DUFSS Questionnaire The DUFSS questionnaire31 measures a person’s satisfaction with the functional and affective aspects of social support. It is intended for use in the clinic to identify people at risk of isolation and to examine the interactions between social support and other determinants of health. Of the 8 items in the DUFSS, 3 items address affective support and the remaining 5 address confidant support. The 5-point answer scales range from 1 (“as much as I would like”) to 5 (“much less than I would like”). The possible range for the total score is 8 to 40, with a higher score indicating a greater degree of unmet need (worse score). Subscores may also be calculated for the affective (possible range, 3-15) and confidant (possible range, 5-25) scales.

Assessment of Complementary Therapy The assessment of complementary therapy32 part of the survey inquired about the frequency of use of 15 different types of alternative therapies. Nine “healing therapies” were included, eg, massage, lifestyle diet, and folk remedies, and 6 “psychological therapies,” including things such as self-help, spiritual healing, and biofeedback. For each therapy, the patients were asked through the survey whether the treatment had been used since the initial diagnosis of breast cancer, in the year before the initial diagnosis of breast cancer, and/or since the diagnosis of metastatic breast cancer.

Data Analysis Comparisons of demographic and disease characteristics between survey responders and survey nonresponders were summarized by using relevant descriptive statistics and were assessed by using the Wilcoxon rank sum test for continuous variables and the Fisher exact test for categorical variables. The relationships between IES-R, DUFSS, and subscale scores on the HADS were assessed by using Spearman correlation coefficients. Statistical tests were 2-sided, with significance defined as P ⬍ .05. There were no corrections for multiple comparisons.

Results Patient Characteristics Forty-five patients were identified and approached regarding study participation. Of these, 28 (62%) were enrolled, 3 were receiving care at other institutions, 1 declined participation, 1 died before consent, and 12 were not contacted due to illness severity and scheduling concerns. Eighteen (64%) consenting patients completed the study questionnaire. At the time of the survey, the women were receiving the following treatments: single-agent chemotherapy (n ⫽ 14), multiagent chemotherapy (n ⫽ 2), hormonal therapy only (n ⫽ 10), no current anticancer therapy (n ⫽ 2). Summaries and comparisons of disease and treatment characteristics for survey responders and survey nonresponders (ie, women who consented to participate in the research but did not complete the study questionnaire) are presented in Tables 1 and 2. The 2P values in each table compare the relevant characteristic for survey responders vs. survey nonresponders. Survey responders did not differ in a statistically significant way from survey nonresponders in terms of age at diagnosis of breast cancer, age at diagnosis of metastatic dis-

ease, or time between diagnosis of metastasis and enrollment. Women who responded to the questionnaire were more likely to have had node-positive disease (2P ⫽ .0007), to have taken adjuvant therapy (2P ⫽ .01), and to have hormone-receptor positive disease than women who did not (2P ⫽.04). Sociodemographic characteristics of survey responders are presented in Table 3. All of the women who completed the survey were self-identified as white. Thirteen (72%) of 18 had completed at least some college, and 2 (11%) of 18 had graduate degrees. Thirteen (72%) of 18 were married; 3 (17%) of 18 had never married; and the remaining 2 (11%) were widowed, separated, or divorced. Only 4 (22%) reported drinking alcohol more than 1 day per week; 17 (94%) were nonsmokers.

Anxiety, Depression, and Traumatic Stress The average HADS scores for the women in this study were 5.70 for anxiety and 3.69 for depression. When using cutoff scores of 11 or more on the anxiety and depression subscales, 2 (11.1%) women were depressed, and 2 (11.1%) women were anxious. When looking at both together, 1 (5.6%) woman was both depressed and anxious, 1 (5.6%) woman was depressed but not anxious, 1 (5.6%) woman was anxious but not depressed, and 15 (83.3%) women did not meet criteria for either anxiety or depression. The average IES-R score of the women in this study was 19.56, but there was a wide range of scores, with a SD from the average of 16.85. Results are summarized in Table 4. When using a cut point of 26, 6 (33.3%) of 18 women had scores that indicated a powerful effect of traumatic stress on ability to function. Two (11.1%) of 18 women had scores higher than 44, which indicated severe impact of traumatic stress on ability to function. In the total sample of 18, the IES-R was significantly correlated with the HADS-Anxiety score (Spearman correlation, 0.81; 2P ⫽ .0002) but not with the HADS-Depression score (Spearman correlation, 0.40; 2P ⫽ .12). There were 6 women in the study who were either depressed or anxious based on HADS-D or HADS-A, or whose IES-R scores indicated traumatic stress levels that impacted their daily living (scores of 26 or higher). One patient had elevated scores on all 3 assessments, another patient had scores that indicated high levels of traumatic stress and depression (but not anxiety), and a third had scores that signified a significant impact of traumatic stress and anxiety (but not depression). A fourth patient had a very high traumatic stress score, but scores on the HADS did not cross the threshold for anxiety or depression.

Overall Well-Being and Social Support Data from the FACT-Breast Scale for the women in our study are presented in Table 5. Generally, the scores indicated that these women are physically functioning well, with symptoms being adequately managed and social support systems in place; average scores in the breast, physical, social, and functional categories were all at least 70% of the highest possible score. However, average scores in the emotional category were right around or just below the 50% of the highest possible score, which indicates lower functioning. The results of the DUFSS Questionnaire are summarized in Table 6. The results were consistent with the results of the social well-being section of the FACT-Breast Scale, which indicated that responders were highly satisfied with the degree of social support that they received from family, friends, and community.

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121

Quality of Life in Metastatic Breast Cancer Table 1 Comparison of Characteristics for Survey Responders Compared With Survey Nonresponders (n ⴝ 28) No. of Patients

Median

Range (Minimum-Maximum)

Age at Diagnosis (y)

.73

Total no. patients

28

51.2

34.5-63.5

Responders

18

51.4

34.5-63.5

Nonresponders

10

47.8

35.2-60.5

Total no. patients

28

56.0

34.5-71.0

Responders

18

56.5

34.5-69.0

Nonresponders

10

50.5

43.0-63.0

Age at Metastatic Disease (y)

.52

Age at Time of Study Enrollment (y)

.67

Total no. patients

28

64.2

39.5-75.6

Responders

18

66.0

39.5-75.6

Nonresponders

10

66.1

45.7-77.9

Total no. patients

28

7.3

4.9-19.7

Responders

18

7.2

4.9-19.7

Nonresponders

10

7.8

5.0-18.0

Time Between Diagnosis of Metastasis and Enrollment (y)

.85

Disease-Free Interval (mo)

.36

Total no. patients

28

62.8

0.0-249.1

Responders

18

54.5

0.0-249.1

Nonresponders

10

74.1

28.3-130.9

Total no. patients

28

5.3

0.0-21.0

Responders

18

4.5

0.0-21.0

Nonresponders

10

6.3

2.5-10.0

Disease-Free Interval (y)

.27

No. Hormonal Agents

.34

Total no. patients

27

3.0

0.0-4.0

Responders

17

3.0

1.0-4.0

Nonresponders

10

2.5

0.0-4.0

Total no. patients

27

3.0

0.0-8.0

Responders

17

3.0

0.0-8.0

Nonresponders

10

3.0

0.0-6.0

No. Chemotherapeutic Agents

.84

Alternative Medicine Use Use of alternative medicine among the 18 survey respondents are summarized in Table 7. Analysis of the results indicated that, overall, women were more likely to engage in alternative medicine use after diagnosis of breast cancer and/or metastatic disease than before the diagnosis. Megavitamins, massage, relaxation therapy, and spiritual healing were the alternative therapies most commonly initiated since the diagnosis of breast cancer and were used after diagnosis of metastatic disease.

Discussion This is the first study of which we are aware to focus on overall quality of life and related domains in women living long term with metastatic breast cancer. In this select group of women living for 5 or more years with metastatic disease, overall quality of life

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2P Value (Wilcoxon Rank Sum Test)

is quite good. However, our finding that some of these women had significant anxiety and depression, and a larger group reported feelings of sadness, hopelessness, and apprehension about their disease, suggests important avenues for future research and intervention. Results of prior studies suggested that psychosocial interventions in the form of weekly supportive group therapy might improve survival in women living with metastatic breast cancer.33 Confirmatory research that attempts to replicate these results was negative for a survival benefit but did reveal positive benefits on mood and on perception of pain in women who were randomized to weekly supportive-expressive group therapy compared with controls.34,35 These positive psychosocial benefits were particularly pronounced in women who were initially more distressed, based on baseline psychosocial questionnaires completed before randomization.

Jane L. Meisel et al Table 2 Comparison of Categorical Characteristics for Survey Responders and Survey Nonresponders (n ⴝ 28) Responded to Survey

Overall

No

2P Value (Fisher Exact Test)

Yes

n

%

n

%

n

%

10

35.7

1

10.0

9

50.0

T1

5

17.9

5

50.0

—

—

T2-T3

13

46.4

4

40.0

9

50.0

Yes

11

39.3

1

10.0

10

55.6

No

15

53.6

9

90.0

6

33.3

Unknown

2

7.1

—

—

2

11.1

Positive

11

39.3

1

10.0

10

55.6

Negative

12

42.9

9

90.0

3

16.7

Unknown/missing

5

17.9

—

—

5

27.8

ER or PgR positive

22

78.6

6

60.0

16

88.9

ER and PgR negative

5

17.9

4

40.0

1

5.6

Unknown

1

3.6

—

—

1

5.6

13

46.4

4

40.0

9

50.0

Tumor Size Missing

.002

Adjuvant Treatment

.01

Nodal Status

.0007

ER/PgR Status

.04

HER2 Status Negative

.59

Positive

2

7.1

—

—

2

11.1

Unknown/missing

13

46.4

6

60.0

7

38.9

Bone only

4

14.3

1

10.0

3

16.7

Bone plus

18

64.3

6

60.0

12

66.7

No bone

6

21.4

3

30.0

3

16.7

Bone only

4

14.3

1

10.0

3

16.7

Bone plus

6

21.4

2

20.0

4

22.2

Chest wall

4

14.3

—

—

4

22.2

No bone

14

50.0

7

70.0

7

38.9

Sites of All Metastasis

.73

Sites of Initial Metastasis

.36

Hormone Therapy at Time of Metastasis

.36

No

1

3.6

1

10.0

—

—

Yes

27

96.4

9

90.0

18

100

2

7.1

1

10.0

1

5.6

Chemotherapy

4

14.3

2

20.0

2

11.1

Hormonal

22

78.6

7

70.0

15

83.3

Hormonal

10

35.7

3

30.0

7

38.9

Chemotherapy

16

57.1

6

60.0

10

55.6

None

2

7.1

1

10.0

1

5.6

Treatment at Time of Metastasis Hormonal plus chemotherapy

.81

Current Treatment

.99

Abbreviations: ER ⫽ estrogen receptor; HER ⫽ human epidermal growth factor receptor; PgR ⫽ progesterone receptor.

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Quality of Life in Metastatic Breast Cancer Table 3 Demographic Characteristics of Survey Responders (n ⴝ 18) Demographic Characteristics

Frequency

%

White

18

100

Non-white

0

0

Less than a college education

5

27.8

College graduate or higher

13

72.2

13

72.2

Race

Education Level

Marital Status Married Divorced, separated, widowed

2

11.1

Never married

3

16.7

11

61.1

Alcohol No alcohol consumption 1-3 d/wk of alcohol use

3

16.7

⬎4 d/wk of alcohol use

3

16.7

Nonsmoker

17

94.4

Limitations

Current smoker

1

5.6

Our findings need to be considered within the context of our study’s limitations. This was a small study in which a substantial minority of women identified as long-term survivors were either not invited to participate or did not respond to the survey. Quality of life measures would possibly have indicated lower functioning in those women who were not invited or did not respond. Future work in larger populations of women living long-term with metastatic breast cancer at various stages of their disease trajectory are clearly warranted to fully understand and ultimately improve quality of life in long-term survivors with metastatic disease. The sociodemographic characteristics of this 100% white population also limit the generalizability of these data and suggest that not only larger but more diverse groups of women need to be evaluated. Although data on income and employment were not gathered in this study, our study population appeared to be well educated, interested in self-care, and potentially enjoying a greater level of social support and access to resources. It may be that, if these data were collected in a larger, more diverse population of women with metastatic cancer, then there would be a higher incidence of anxiety and depression and lower overall scores on the FACT-Breast Questionnaire rather than just in the emotional function subset. It will be important to extend studies like this to other populations of long-term survivors to see whether the data collected here are replicable, and, if not, what other areas of quality of life need attention. Finally, because there are new treatments constantly being unveiled in this population, it may be that quality of life in patients with metastatic disease now is different even than it was at the time of the study. This limitation only highlights the need for ongoing research in a field in which available treatments, medical knowledge, and duration of average survival continues to expand.

Smoking

In addition to these studies that looked at supportive group therapy, there are several other recently published studies that shed light on the types of interventions that might be used to lighten the emotional burden of metastatic breast cancer. Researchers from Great Britain designed a well-being intervention focused on increasing mental awareness and frequency of positive experiences, and tested it among patients with metastatic breast and prostate cancer.36 This small study (n ⫽ 27) did find statistically significant improvement in quality-of-life scores after intervention. In an Australian study published in 1999 that randomized 124 patients with metastatic breast cancer to either a group cognitive behavioral therapy intervention vs. standard oncologic care, they found that, during the period after therapy, the patients in the cognitive behavioral therapy group showed reduced depression and total mood disturbance as well as improved self-esteem relative to their control-group counterparts.37 A larger study, performed at Memorial Sloan-Kettering, randomized 485 women recruited over an 8-year period to weekly supportiveexpressive group therapy vs. control for at least 1 year.38 The researchers found that weekly therapy ameliorated and prevented new DSM-IV (Diagnostic and Statistical Manual of Mental Disorders) depressive disorders, reduced hopeless-helplessness and trauma symptoms, and improved social functioning. These women were entered into the trial on average only 10 months after diagnosis of cancer recurrence, but it is likely that women living long term with metastatic cancer would see similar results. Our study results as well as data from the nonmetastatic breast cancer population suggest that certain forms of alternative therapy, such as yoga and meditation, might be perceived as helpful among these patients. In our study, most women surveyed had experimented with at least one form of alternative therapy since receiving the diagnosis of breast cancer, with spiritual healing, relaxation techniques,

124

vitamins, and massage noted as some of the most widely used. It is arguable that the large number of women who take advantage of some of these therapies may, in part, be reflective of the sociodemographic characteristics of our cohort. One of the larger studies of complementary medicine in patients with early-stage breast cancer, performed in a cohort of 222 women, found that women most likely to use complementary therapies were college educated and employed.39 However, extension of these therapies to other populations might help improve quality of life with relatively little cost. A study published in 2007 validated this hypothesis, which recruited 128 patients with breast cancer from an urban cancer center and randomly assigned them to a 12-week yoga intervention and to a control group, with changes in quality of life assessed with the FACT-Breast Scale before assignment and after the intervention.40 The study indicated that yoga was associated with beneficial effects on social functioning across the board. Similar studies need to be done in patients with metastasis, but it may be that, by making complementary therapies such as yoga, massage, and relaxation classes more readily accessible through traditional avenues, it might help all the patients cope more effectively with some of the emotional stress brought on by the burden of their chronic disease.

Clinical Breast Cancer April 2012

Conclusion In this novel evaluation of quality of life of women living long term with metastatic breast cancer, overall quality of life is good, but

Jane L. Meisel et al Table 4 Traumatic Stress Reactions Among Survey Responders: IES Results n

Average

SD

Minimum

25th Percentile

Median

75th Percentile

Maximum

IES intrusion

17

8.94

8.23

0.00

0.00

7.00

17.00

22.00

IES Avoidance

16

10.06

9.92

0.00

0.00

8.50

17.00

30.00

IES Total Score

16

19.56

16.85

0.00

1.00

18.00

31.50

49.00

Abbreviation: IES ⫽ Impact of Events Scale.

Table 5 Quality of Life in Survey Responders: Results of the Functional Assessment of Breast Cancer Therapy Scale n

Average

SD

Minimum

25th Percentile

Median

75th Percentile

Maximum

Breast

18

26.11

4.43

16.00

23.00

27.50

30.00

32.00

Physical

18

21.72

4.94

12.00

18.00

22.50

26.00

28.00

Social

18

20.94

4.57

7.00

19.00

23.00

24.00

24.00

Emotional

18

11.33

4.04

2.00

9.00

12.00

15.00

17.00

Functional

18

20.33

6.07

8.00

16.00

21.50

26.00

28.00

Total Score

18

100.44

19.30

57.00

87.00

101.50

116.00

127.00

Table 6 Assessment of Social Support: Results From the Duke-University of North Carolina Functional Social Support Questionnaire n

Average

SD

Minimum

25th Percentile

Median

75th Percentile

Maximum

Affective

18

4.89

2.76

3.00

3.00

3.00

6.00

13.00

Confidant

18

7.28

4.48

5.00

5.00

5.00

7.00

21.00

Total Score

18

12.17

6.94

8.00

8.00

9.00

14.00

34.00

Table 7 Alternative Medicine Use Among Survey Responders: Results From the Assessment of Complementary Therapy Type of Therapy Any Alternative Medical Therapy

Used Since Initial Diagnosis of Use in Year Before Initial Diagnosis of Used After Breast Cancer Breast Cancer, n (%) Breast Cancer, n (%) Metastasis, n (%) 13 (72.2)

9 (50.0)

12 (66.7)

5 (27.8)

3 (16.7)

4 (22.2)

Healing Therapies Megavitamin Herbal medicine

3 (16.7)

2 (11.1)

3 (16.7)

Massage

7 (38.9)

3 (16.7)

7 (38.9)

Chiropractic

1 (5.6)

1 (5.6)

1 (5.6)

Lifestyle diet

2 (11.1)

1 (5.6)

2 (11.1)

Acupuncture

3 (16.7)

1 (5.6)

1 (5.6)

Energy healing

2 (11.1)

1 (5.6)

2 (11.1)

Homeopathy

1 (5.6)

1 (5.6)

1 (5.6)

Folk remedies

1 (5.6)

1 (5.6)

1 (5.6)

Relaxation

5 (27.8)

2 (11.1)

5 (27.8)

Psychological Therapies

Self-help

2 (11.1)

0

1 (5.6)

Spiritual healing

6 (33.3)

5 (27.8)

5 (27.8)

Imagery

3 (16.7)

1 (5.6)

2 (11.1)

Biofeedback

0

0

0

Hypnosis

0

0

0

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Quality of Life in Metastatic Breast Cancer substantial anxiety and depression afflict a small percentage of the population, and a larger group of women are plagued by less severe but still considerable psychosocial distress related to their disease. This is a critical cohort to study, because, as the number of women living longer with metastatic disease continues growing, their needs will become increasingly important to address.7,41 Further studies are needed to evaluate the extent to which our findings are similar among other cohorts of patients living with metastatic breast cancer and whether there are other areas of quality of life that need attention. As we gain a better understanding of the areas that are lacking, we will be better equipped to design interventions to improve the overall physical and emotional well-being of patients living longterm with metastatic breast cancer.

Clinical Practice Points ●

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Quality of life is an important outcome measure in all patients with breast cancer, but, in the metastatic population, in which cure is no longer a primary goal of care, optimizing physical and psychological well-being becomes even more critical. With the advent of new and better therapies, the population of patients living long term with metastatic breast cancer is continually increasing, and this is one of the first studies to date that focused on overall quality of life and well-being in these patients. In this select group of women living for 5 or more years with metastatic disease, we found that overall quality of life is quite good, but that there is a small subpopulation of patients with significant anxiety and depression, as well as a larger group that reported less burdensome sadness about their disease. This finding suggests important avenues for future research and intervention. If patients living long term with metastatic breast cancer who are likely to benefit from additional psychosocial support can be identified, then interventions such as supportive group therapy, yoga, meditation, or cognitive behavioral therapy could be assessed to see whether these are helpful in this regard. Investigations such as these may lead to the incorporation of quality of life assessments and subsequent interventions into clinical practice, translating into improved quality of life in all patients living long term with metastatic disease.

Disclosure The authors have stated that they have no conflicts of interest.

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