The results of the LAF survey presented in this chapter are consistent with those of similar surveys that demonstrated the broad-based burden of cancer survivorship, the many serious and long-term issues, and inadequate resources for assisting patients especially for "non-medical" needs.6,19 These studies also demonstrated the perseverance of the cancer patient to overcome those hardships with many survivors paradoxically experiencing that their life was actually improved by cancer. Learning how patients manage could lead to insightful avenues for cancer survivorship activities through positive psychology interventions.20
The National Health Interview Survey of 1992 demonstrated that most (58%) cancer survivors had received some patient educational materials from a health care provider.19 However, relatively few had received counseling or participated in support groups (14.2%), contacted cancer organizations after their diagnosis (10.9%), or participated in a research study or clinical trial as part of their cancer treatment (4.7%). One ninth (10.7%) of the survivors were denied health or life insurance coverage because of their cancer. Nearly one fifth (18.2%) of the cancer survivors, who worked before or after their cancer was diagnosed, experienced employment problems because of their cancer. Specific data in breast cancer survivors demonstrated that 16% were unable to obtain life insurance and 7% lost health insurance as a result of a diagnosis of breast cancer.6 Analysis of large cancer centers also suggested that many resources were not readily available such as school reentry programs (19% of cancer centers), nutrition counseling (14% of cancer centers), and counseling addressing fertility and sexual concerns (14% of cancer centers).21 These inadequacies would likely be more frequent in smaller programs. Overall, these studies demonstrated that there were substantial degrees of unmet needs for cancer survivors.
However, samples of breast cancer survivors have demonstrated less profound cancer impact.22 As noted, breast cancer survivors may have a quality of life as good as or better than age-matched control women.23 Similar rates of sexual dysfunction are seen between breast cancer survivors and postmenopausal women who have not had cancer.24 Marital breakdown was no more common among women after breast cancer than among control women matched on demographics.25,26 There may be no major differences in quality of life between women having undergone a mastectomy compared to those having breast conserving surgery.27 Other studies also suggest that only a minority of patients have significant psychological distress. For example, older adult long-term cancer survivors do not demonstrate clinical levels of posttraumatic stress disorder although over 25% have clinical depression or display important symptoms of psychological distress related to the continuing effects of cancer and its treatment.28
Similarly, the variability of the impact of cancer upon the diagnosis of depression is discussed in a review paper in which the prevalence ranges from slightly greater than the normal population (6-15%) to suggesting that more than one third of all cancer patients were depressed and were under-diagnosed and under-treated based primarily on the belief that cancer patients should be depressed.29
Reconciliation of these apparent contradictions suggests that many survivors will overcome the challenges related to their disease and that with better understanding and treatment even more would do so. Survivorship issues may also be related to disease specifics or resolved with resources targeted to these specialized circumstances. Overall, more exacting evaluation of cancer survivorship issues is still required and analysis of those who successfully manage their cancer burden may give insight into useful mechanisms of cancer survivorship.
A limitation of the LAF survey and others presented in the literature is selection bias and the substantial under representation of nonmainstream and especially underserved populations.13 It is conceivable that in these populations, other not yet identified issues of survivorship with more problematic outcomes would be noted.30 It has been well established that cancer health outcome disparity exists for these populations who generally may present in more advanced stages of their disease, may not receive exemplary therapy, manifest greater toxicity from therapy, and demonstrate poorer overall survival.31,32 It is therefore likely that nonmedical survivorship issues would be even more problematic considering the social injustice, such as the lack of private health insurance, in these underserved populations. Evaluation of the impact of ethnicity, culture, and access to health care is required for the complete understanding of the burden of cancer survivorship.
Currently, it is estimated that the annual monetary health care expenditures for cancer in the United States is approximately 65 billion dollars of which only a small proportion is allocated to nonmedical issues of cancer survivorship. The totality of the economic burden for the cancer patient has not been fully measured, especially whenjob-related issues that affect adults in the prime of their employment are considered.33 How to provide for "non-medical" survivorship management when the "medical" aspect of health care is singularly financially challenging is an issue that must be addressed.
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