NEWS

Cancer Survivor Issues Are All in the Family

Gwen Moulton

As the number of cancer survivors continues to increase, researchers are just beginning to ask how to support them and their families throughout an illness and over a life span, from pediatrics to geriatrics, survival to death.

It has been estimated that three out of four families will be affected by cancer at some time in their lives. Because there have been few studies so far, much of what is known about cancer survivors focuses on siblings and parents of young children who have had or survived cancer. Less is known about adults with cancer or parents of adolescents and young adults with cancer.

The National Cancer Institute has earmarked funding to look into issues faced by families of cancer survivors (see sidebar). Patricia Ganz, M.D., director of the Division of Cancer Control and Prevention Research, University of California, Los Angeles, agrees that such research, while still in its infancy, will be a valuable asset in helping cancer survivors. "Like everything else in science, it is incremental. . . . It's a big challenge, but you pick off a small piece you can study and understand, and over time we will develop a body of knowledge that will help us understand the problem," Ganz said.



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Dr. Patricia Ganz

 
New Issues

During the last 15 to 20 years, there has been a significant increase in the number of children who have survived cancer, especially leukemia, which represents about 31% of all cancers occurring in children under 15 years old. While the number of children with cancer (about 154,000 in 1999) is much lower than adults (about 8.2 million in 1999), children may survive longer.

With young survivors, a key question is, "At what cost are they surviving?" said Gary Walco, Ph.D., chief of the pediatric psychology section at Hackensack University Medical Center, New Jersey. These costs include physical ramifications and psychological, social, and economic repercussions on the individual and the family. "These are areas people never thought of because it was so infrequent that children survived into adulthood," he said.

Families of childhood cancer patients are at high risk for other problems later because of the often-reported attention that is given to the affected family member, said Julia Rowland, Ph.D., director of NCI's Office of Cancer Survivorship. Some anecdotal reports suggest that children in these families have more behavior and health problems, perhaps as a consequence of their sibling's illness, she said.



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Dr. Julia Rowland

 
Illness in a parent is associated with later mental health services needs of children, and the loss of a parent in childhood is a strong predictor of mental health service use later, Rowland noted. However, what that does to the health and well-being of an affected family member remains unexplored, she said.

Pediatric cancer treatments now aim to incorporate concerns about late effects up front to avoid subsequent problems. For example, studies that found drops in intelligence in children who had cranial radiation led to the use of more intensive chemotherapy instead, Walco noted.

Although the chemotherapy regimens resulted in excellent rates of remission and cure, there are still neurocognitive deficits among these young survivors. In another example, the use of anthracyclines in children with Hodgkin's lymphoma sometimes leads to cardiomyopathy, and this prompted one group to incorporate into its clinical trials the use of other drugs to reduce the treatment effects on the heart.

The physical repercussions of cancer and its treatment are linked with their psychological and social impact, and these latter issues can be particularly challenging to the family support system. Some studies have shown that children surviving leukemia feel as if they do not fit in socially. The issue for parents becomes dealing both with the acute phase of the disease and these later, sometimes more subtle and unexpected, effects, Walco said.

"The same cognitive deficits that can affect academic development may also be pervasive and affect areas like social and emotional development," Walco said.

Children who have later neurocognitive deficits may need special placement in school, prompting rehabilitation and evaluation, Walco said. Typically, these services would not be reimbursed by private health insurance or the school system, and the parents would have to pay. Walco said this suggests a bigger problem with the current service delivery model and the nature of health care reimbursement, which is that it does not give enough viable means to consistently address the needs of survivors. He added that how to make the system work for survivors is a research question as well as a policy issue.

Others have noted that when cancer care is delivered on an outpatient basis, family members may give up jobs or lose time from work to care for cancer patients. In a recent report called Ensuring Quality Cancer Care, the Institute of Medicine noted that cancer care services, from early detection to treatment, follow-up and palliative care, can span decades, occur in a variety of settings, involve numerous providers from different medical disciplines, and incorporate an ever-changing set of treatment modalities. In addition to more research, the IOM called for better coordination and support services to help patients and their families navigate the complicated and costly system.

Development and the Family

Because a person's place in a family can change over time, that person's need for support can change too.

Between pediatrics and geriatrics, roughly ages 17 to 70, there are different developmental paths that have yet to be studied by cancer researchers. Walco suggested identifying the key developmental issues from birth to geriatrics and then looking at how those play out at different stages of life, and how having cancer has had an impact. This "lifespan approach" has been popular in the discipline of psychology for about 30 years, but it is now being applied to other areas.

"Development is a lifelong process. People have normal developmental courses throughout their lives and having cancer is going to affect that developmental trajectory in some form or another," Walco said.

One thematic area that could be examined, for example, is attachment and dependency, Walco said. The impact of cancer in this realm will vary according to the perspective of the patient. An adolescent with cancer who is at a natural stage of rebellion from parents and family will have to deal with a newly imposed role of dependency on them; a 30-year-old just starting his career and ready to conquer the world will be affected in yet another way by the need for dependency on his birth family or the family he is just starting; a 55-year-old who becomes dependent on his children for support has yet another perspective on the matter.

For researchers, the advantage of a stage model over the lifespan approach is that it organizes issues around a certain stage of life, Walco said. The disadvantage is that it assumes a certain amount of homogeneity. To know why those stage clusterings are important, one must look at the underlying developmental functions or themes over the lifespan, he suggested.

Future Effects

Strategies need to be developed to follow survivors, said UCLA's Ganz. "Surveillance research should not stop when you reach that 5-year survivor mark because [some late effects] are going to occur a decade or two later," Ganz said.

There is a vast range of late medical effects including serious second cancers, she said. Young people with Hodgkin's disease, for example, are at risk for leukemia 5 to 10 years after treatment and cure, and for breast cancer and bladder cancer 10 to 20 years afterward.

The impact of these effects on the family vary by cancer sites, she said. For example, cervical cancer, which is widely screened for and treated at an early stage, tends to disproportionately affect underserved populations of women in their 20s and 30s. These women may have hysterectomies and become unable to start or expand a family. By comparison, breast cancer tends to afflict more upper middle class women in their 50s through 80s. Even when detected at an early stage, the treatments are often surgery, chemotherapy, and radiation, with attendant late effects.

More studies will help to provide answers to these questions. "We still need the basic science research in the behavioral and social sciences just as we would in the biological sciences," Ganz said.



             
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