Quality of Life Among Long-Term Cancer Survivors
Quality of Life Among Long-Term Cancer Survivors
For the sake of the 7.4 million Americans alive today who have a history of cancer, Ferrell and Hassey Dow's paper is important. Understanding more about the problems and issues faced by these individuals and their families, as well as identifying effective ways to ensure that they experience a high quality of survival, are significant issues for cancer care and research.
Ferrell and Hassey Dow draw on a considerable body of current studies, a number of which they themselves have conducted, to provide a broad overview of the challenges that cancer survivors face. A strength of the article is its clear presentation of the difficulties that cancer survivors experience in multiple aspects of quality of life (QOL), as identified by studies of defined groups of survivors and the perspectives of members of the National Coalition for Cancer Survivorship (NCCS).
Although the article provides an introduction to this subject, it is less informative about the next steps that researchers and clinicians should take. Readers would have benefited from the recommendations of such distinguished scholars. I will identify a number of unanswered questions that occurred to me as I read this review.
Do Survivors' Needs Change Over Time?--The majority of the research that the authors review is cross-sectional, providing a snapshot of survivors' needs at a particular point in time. Although such studies provide an estimate of the point prevalence of a need, it gives no information about the duration or varying intensity of a problem. Longitudinal, prospective study designs with repeated assessments are needed to understand the natural history of QOL in cancer survivors.
To Whom Should Cancer Survivors Be Compared?--Certain long-term sequelae can clearly be linked to cancer and/or its therapies. However, some of the common problems listed by Ferrell and Hassey Dow, such as depression, are nonspecific. Understanding the significance of such findings requires one to answer the question, "compared to whom?"
Untangling problems that are unique to cancer and its treatment from changes due to aging or other chronic diseases is an important challenge. Studies including comparison groups or normative data from, for example, individuals matched for age and gender but without a cancer history, would be very helpful in understanding how cancer survivors are both similar to and different from other populations.
What About Cancer's Effects on Families?--It is striking that the authors' study of NCCS members indicates that family concerns cause survivors the most difficulty, after lingering distress over the initial diagnosis and treatment. Yet this is one area in which there is very little research, and, as the authors note, most data are based on the families of breast cancer survivors.
We need to learn more about the long-lasting effects of cancer on families. This focus may be particularly important in the context of the rapidly developing knowledge about the role of genetics in cancer etiology. As additional links between genes and cancer are identified, cancer survivors' siblings and children may experience a new set of concerns about undergoing genetic testing and the implications of test results on health insurance, family planning, screening, and other health-related decisions.
Do QOL Concerns Differ Among Survivor Subgroups?--Even after one controls for disease site and treatment, there may be many other significant individual factors that affect survivorship. One potentially important consideration is culture. Virtually no information has been reported on how life quality may vary among cancer survivors from different ethnic groups. However, cultural factors may have a profound influence on cancer rehabilitation and on survivors' well-being.
For example, many Asian and Polynesian cultures stress the harmony among physical, mental, and spiritual well-being and its role in disease etiology. Thus, the implications of and problems associated with "recovery" and "reentry" may differ from the "Anglo" perspective of cancer as a "disease" that is treated and eradicated.
In addition, in most Asian cultures, the duty of members of one generation to care for their parents is a strongly held value. In such cultures, cancer survivors rendered infertile by their disease or therapy may be rejected as potential marriage partners and occupy a devalued role in that society. How cultural factors may influence cancer survivorship needs to be elucidated.
What About the Positive Aspects of Being a Cancer Survivor?--Ferrell and Hassey Dow emphasize the problems associated with surviving cancer. However, no review of the experience of survivorship is complete without some mention of the positive sequelae of being a cancer survivor. Cancer survivors' self-confidence may be enhanced because they have learned that they can meet and successfully cope with a significant challenge. Many survivors report that confronting their own mortality helps them to live more fulfilling lives, as they determine what is important to them and reorder their priorities accordingly. Although life after cancer may be different, it may also be better.
Thus, although it is important to learn from the problems of cancer survivors, it is equally important to learn from their achievements. Future cancer survivors need to have realistic expectations of the difficulties they may face, as well as their potential for positive growth.
1. Mullan F, Hoffman B (eds): Charting the Journey--An Almanac of Practical Resources for Cancer Survivors. Mount Vernon, New York, Consumers Union, 1990.
2. Price, R: A Whole New Life. New York, Penguin, 1994.