Breast Cancer Fear in Breast Cancer Survivors of African descent

Purpose:

The purposes of the current study were: 1) to describe breast cancer fear and its relationship to phase of survivorship; 2) determine whether levels of breast cancer fear vary by phase of survivorship; and 3) determine whether there was a relationship between fear and age in breast cancer survivors of African descent.  

Methods:

Secondary analysis was used from the study, Inner resources (sense of coherence, hope, and spiritual perspective) as predictors of psychological well-being in African-American breast cancer survivors which is the most complete available on fear and distress in breast cancer survivors of African descent.

Purposive Sampling was used.  Women in the original study were recruited from two settings primarily in the United States and Bermuda; outpatient oncology facilities (n=46) and women’s cancer organizations, church groups, sororities, and other community or civic organizations (n=116).  Institutional Review Board approval was obtained prior to the study.  

The instruments used in this study included a demographic questionnaire and selected questions from the Quality of Life/Breast Cancer Psychological Well-Being (PWB) Subscale by Ferrell and Grant.  Data related to ethnicity, age, and survivorship were extrapolated from the original demographic questionnaire.  Survivorship was divided into three phases; Phase I or initial diagnosis and treatment (four months to two years); Phase II or completion of treatment/remission (greater than two years to ten years); and Phase III or long-term survivorship (greater than ten years).  The Quality of Life Scale/Breast Cancer Version (PWB subscale) consists of 22 items ranked on a range from 0 (worst outcome) to 10 (best outcome).  High scores represent high levels of PWB; low scores represent low levels of PWB, or psychological distress.  Internal consistency, using Cronbach's alpha coefficient, revealed a subscale alpha of .91 for the study.  For the secondary analysis, a new subscale entitled Breast Cancer Fear was adapted from the PWB Subscale.  Six questions were included to elicit distress (2 items) and specific fears (4 items):  Distress - how distressing were the following aspects of your illness and treatment: 1. initial diagnosis and 2.  completion of treatment?  Specific Fears: To what extent are you fearful of 3.  future diagnostic tests,  4.  a second cancer, 5.  recurrence of your cancer, and 6.  spreading (metastasis) of your cancer?  Level of fear ranged from 0 to 60 with low fear levels ranging from 0 to 20 and high fear levels of 41 and above.  Internal consistency was alpha =.90.  Three researchers with expertise in quality of life and oncology were consulted to obtain content validity; all three agreed that the items measured the concept of breast cancer fear.  

Descriptive statistics such as frequency tabulations and measures of central tendency were calculated.  Data analysis was conducted of the research questions using the Kruskal-Wallis test and the Chi-Square test. 

Results:

 The total sample (N=162) was used in the secondary analysis.  One hundred and forty-one of the women (87 percent) were receiving no active treatment (survivorship Phase II or III, more than 2 years) at the time of the study while 21 (13 percent) were being actively treated (Phase I, less than 2 years).  There were no statistically significant differences according to age, education, or phase of survivorship between the women in active treatment and those not receiving active treatment.  The final sample of 162 was divided into the following three phases of survivorship for the purpose of analysis:

1.  Phase I: 4 months to 2 years; (n of 62)

2.  Phase II:  more than 2 years to 10 years; (n of 60)

3.  Phase III:  more than 10 years (n of 39)

The age range of the total sample was 31 to 85 years with the majority of the sample comprised of women with ages ranging from 31 to 64. The mean age was 56.5 (SD of 12.8). The mean income range was $30,000 to $34,999. Approximately 40 percent of the survivors had income levels greater than $40,000. The majority had some college education.

     Phases of survivorship.  Breast cancer survivorship ranged from 4 to 6 months to greater than 20 years.  The average length of survivorship was greater than 2 years to 5 years.  There was a fairly equal number of women in Phase I (n of 63) and Phase II (n of 60) while there were 39 women in Phase III (n of 39). The young and middle-aged women, 31-65 years, were in Phases I and II; the majority of older survivors were in Phase III.  The majority of survivors in Phase I had a High School diploma while those in Phase III had the least amount of education.  Most of the low-income women were in Phase II while most of the middle-income women were in Phase I.  There were 11 survivors in Phase III that had incomes greater than $40,000.

     Breast Cancer Fear and Phase of survivorship.  Level of fear ranged from 0 to 60.  The mean level of fear was 36.57 (SD of 17.5).  In every phase of survivorship, the women experienced at least a moderate level of fear. The level of fear for women who had survived the longest (greater than 10 years) was at the upper end of the moderate range.  Those who had survived greater than 2 to 10 years had the lowest level of fear.  There was no significant difference in level of fear according to phase of survivorship (p of .231).

     Level of Fear and Age.  The sample was comprised of 57 (35.2 percent) women with ages ranging from 31 to 49, 59 (36.4 percent) with ages ranging from 50 to 64, and 46 (28.4 percent) with ages ranging from 65 to 85.  When compared with each other according to the level of fear experienced, almost half of the survivors experienced a high level of fear (n of 77, 47.5 percent).  Of these, the highest percentage of women (67.4 percent) was in the oldest age range of 65-85 years.  There was a significant association in the level of fear according to age (χ² = 10.937, p= .027).  A higher proportion of the older survivors (65-85 years old) scored a higher level of fear compared to the other two age groups.

Conclusion:

The literature states that women diagnosed with breast cancer tend to cope better during the active phase of treatment and struggle after completion of treatment and that the phase immediately after completion of treatment is the most fearful time for the patient.  However, in this study, those who had survived the longest (those in Phase III) experienced the greatest level of fear. Other studies reported that older age and time since breast cancer diagnosis were associated with reduced fear of recurrence.  However, the current study reported the older women (65 to 85 years old) had a higher level of fear while the women who were 31 to 64 years old reported lower fear levels.  Many of the studies reported in the literature were completed using primarily European-American women.  Those conducted with women of African descent varied regarding the measures of fear used; some measured fear; others worry.  Ethnicity could explain why the results are different from expected, particularly for those women who had completed treatment.

There is a need to develop culturally congruent fear assessments and identified coping strategies that can be used to design programs to help monitor and manage the level of fear experienced by women of African descent.  Nurses should treat all patients individually because breast cancer fears may be drastically different from person to person.  It is important to appreciate the deeply rooted spiritual beliefs of women of African descent so that an individualized and holistic plan of care is created that intertwines spirituality into the physical and psychological goals of treatment.  The current study implies a need for more culturally specific studies of fear in breast cancer survivors of African descent.  Additionally, the concept of fear needs to be differentiated from worry.  Further study is needed on fear among varying sociodemographic levels, especially age.  Qualitative studies are needed to explore the experience of survivorship from Phase I to Phase III, definition of survivorship, and the types of fears expressed in the various phases.  These explorations can lead to the development and testing of culturally congruent assessment tools followed by evidence-based interventions to reduce fear in women of African descent.