Comparisons Of Longterm Effects Of Diagnosis And Treatment By Cancer Site Breast Cancer And Hodgkins Disease

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In this section, we compare two studies conducted by the lead author and her colleagues. The first study was a longitudinal evaluation of physical, social, psychological, and spiritual QOL among long-term survivors of Hodgkin's disease. It was expected that type and frequency of the physical dimension of QOL would be explained by type of treatment, age at the time of treatment and time since diagnosis. It was also expected that social and psychological dimensions of QOL would be explained by differences in educational attainment. The sample was composed of 141 individuals (55% male) who participated in two different surveys conducted at Stanford University Medical Center. The initial interviews were conducted in-person while the 12-year follow-up interviews were self-administered; both surveys were conducted when the individual came to the clinic for a routine check-up. The second study was a 5-year follow-up of a population-based cohort of 185 women who were younger 50 years of age at diagnosis of breast cancer and were cancer-free 5 years later. The initial survey was in-person, often in the women's home, and the 5-year follow-up was a telephone survey.32 Comparative findings are organized according to Ferrell and colleagues' four domains of QOL.1518

Physical quality of life: Self-reported health ratings and physical health were examined in the Hodgkin's disease cohort. The proportion of who rated their health as "excellent" went up by 10 percentage points; however, the proportion that rated their health from "fair to poor" also went up by 7 percentage points (p = 0.05). Similarly, a 10 percentage points increase in physical activity level was found, i.e., the percent of individuals indicating that their physical activity was not compromised (76-66%, p = 0.02). The predictors of lower self-ratings of health included being of older age (coefficient is -0.014, p = 0.05), being further from treatment (coefficient is -0.05, p = 0.001), and reporting greater emotional distress (coefficientis -0.005, p = 0.05) while higher educational attainment (coefficientis 0.26, p = 0.01) was related to more positive ratings of physical health.

In the breast cancer cohort, little change in the women's ratings of health was reported. Five years after diagnosis, 92% rated their health as good or excellent and only 10% said their health had been getting worse. Significant improvements were reported for surgical symptoms, and the following SF-36 scales (i.e., physical functioning, physical and social roles, vitality, and bodily pain). Overall, physical domain QOL ratings improved when compared to the first year following diagnosis. Using the composite physical measure from the SF-36, a greater increase in physical QOL was associated with reporting fewer chronic conditions (coefficient is -2.60, p < 0.01), being employed (coefficient is 3.24, p = 0.04), having been treated by chemotherapy (coefficientis 3.88, p = 0.03), and fewer children under age 18 living at home (coefficientis -4.77, p < 0.01).32

Differences between the groups may be due to the greater diversity in age of the Hodgkin's disease cohort, the presence of both men and women, and the longer follow-up for the Hodgkin's cohort.

Psychological quality of life: Few changes in the measures of mental health were expected and, in fact, no change was found on depression as measured by the CES-D,71 Rosenberg's measure of self-esteem,72 or on the six subscales of the Profile of Mood States (POMS)73 in the Hodgkin's disease cohort. A statistically significant higher score (p = 0.0025) was found on the total POMS scale, indicating greater emotional distress. The only significant predictor of greater mood distress was time since diagnosis (coefficientis 1.36, p = 0.01) while higher self-esteem was marginally related to lower mood distress (coefficient is 5.21, p = 0.06).

With regard to the breast cancer survivors, body image problem scores decreased (4.52 to 4.22, p = 0.01) by the 5-year follow-up, as did the SF-36 mental health (72.8 to 78.0, p = 0.001), and the vitality (50.5 to 62.8, p = 0.001) scales. In the multivariate analyses, the mental health dimension derived from the SF-36 was used as an outcome. Significant predictors of a greater increase in mental QOL were fewer chronic conditions (coefficient is -1.66, p = 0.05) and a smaller decrease in emotional support (coefficient is 0.38, p = 0.03). While the two measures of psychological distress varied in the two studies reducing comparability, it is interesting that the psychological domain of QOL is positively related to the physical domain. As either group's physical functioning improved, so did their emotional functioning.

Social quality of life: Female Hodgkin's disease survivors who were unemployed initially, continued to be unemployed while those who were working at least parttime were more likely to report being employed full-time at follow-up (8.4% increase, although not statistically significant). Male survivors, on the other hand, were more likely to report being unemployed at the second interview. Overall, the unemployment rate of Hodgkin's disease survivors who were over age 30 at the time of treatment increased from 18.8 to 34.1% (p = 0.03). Survivors reported that the number of friends and relatives to whom they felt close also was reduced. These constrictions in one's social network could be related to illness imposed restrictions, reduced social activity (lack of employment or not being married, loss of friends due to death) or to stigma. Using multivariate analysis, these different explanations were tested. While the model developed explained 48% of the variance, the only significant variable was the initial number of friends and relatives (coefficient is -0.78, p < 0.001). This finding suggests at the time of diagnosis, friends and relatives came to the person's aid, but overtime this "extra" support diminished. With regard to social health, sexual interest had decreased from 19.9 to 49.6% (p = 0.001). Multivariate modeling suggests that changes in sexual interest were largely related to increases in emotional distress (coefficient is 0.006, p < 0.001) and marginally related to being treated by combined modality treatment (coefficient is 0.156, p < 0.05).

We found no significant changes in marital/partner status or in employment status in the breast cancer group. With regard to the SF-36 subscales, social function improved over time. We did not find differences in sexual activity or reporting of sexual problems even though by now most women were menopausal (75% due to treatment) and there were fewer children at home. There were significant decreases in the size of one's social network and emotional support. In multivariate analyses, less reduction in emotional support predicted better QOL.

It is interesting that reductions in survivor's social networks were found in both groups. Employment differences between the female Hodgkin's disease survivors and the breast cancer survivors may be attributed to differences of age at the time of the cancer presentation. Younger women in the Hodgkin's cohort may have had more difficulties in completing their education and developing a career than the breast cancer survivors.

Spiritual quality of life : We measured attendance at religious services in both groups and found no difference in attendance over time. In the breast cancer cohort, we also measured frequency of prayer and again, found no difference over time. We also found that as time post-diagnosis increased, breast cancer survivors' worries about the future also decreased. Eighty-five percent of breast cancer survivors reported that spirituality to be an important part of their lives.

Exhibit 2

QOL in Long-Term Survivors of Hodgkin's Disease and Breast Cancer

Hodgkin's disease

Breast cancer

N = 141 (55% male) Outcomes at 12-year follow-up

N = 185 (100% female) Outcomes at 5-year follow-up

Physical domain

• 10% increase in "excellent" self-reported health

• 7% increase in "fair" to "poor" self-reported health

• 10% increase in physical activity Predictors of low self-rated health include:

• longer time since treatment

• greater emotional distress

• lower educational attainment

Physical domain

• 10% in "fair" to "poor" self-rated health

• Improvements in surgical symptoms, physical functioning, physical and social roles, vitality, and bodily pain

Predictors of improvements in physical health include:

• reporting fewer chronic conditions

• being employed

• treatment with chemotherapy

• having fewer children at home

Psychological domain

• No changes in depression, self-esteem, or mood

• Increases in emotional distress Predictors of emotional distress include:

• time since diagnosis

• lower self-esteem

Psychological domain

• Improvements in body image, mental health, and vitality

Predictors of mental health include:

• fewer chronic conditions

• smaller decrease in emotional support

Social domain

• 15% increase in unemployment

• Decrease in social support

• 30% decrease in sexual interest Predictors of sexual interest include:

• emotional distress

• treatment with combined modality

Social domain

• No changes in employment status or sexual activity

• Decrease in social support

• Increase in social function Predictors of social domain QOL include:

• smaller decreases in emotional support

Spiritual domain

• No change in attendance at religious services

Spiritual domain

• No change in attendance at religious services or frequency of prayer

• Decrease in worries about the future

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