In the year 2007 1,444,920 new cases of cancer will be diagnosed in the United States, of those 10,400 will be in kids 0-14 years of age. An estimated 559,650 Americans will die of cancer in 2007, 1,545 of those will be children. Although mortality rates have declined for childhood cancer by 48% since 1975, it is still the second leading cause of death among children, exceeded only by accidents (American Cancer Society, 2007).
Although cancer is less common in children than it is in adults, it tends to be extremely traumatic for all involved when a child is diagnosed with such a potentially deadly disease. Achievements in the treatment of childhood cancer have dramatically increased the likelihood that a child diagnosed and treated for cancer today will survive. However, the treatments can have long-term adverse effects on the child, many of which may not show up until adulthood. These late effects can include damage to essentially all organ systems, including the central nervous system. This has an effect on not only physical development, but emotional and cognitive development as well (Kazak, et al., 2004). This paper will discuss some of these late effects of childhood cancer, the impact they have on the family, and what can be done to help the family deal with these issues.
The National Cancer Institute (2007) defines late effects as side effects of cancer treatments that appear months or years after treatment has ended. Depending on the type of treatment, the late effects can manifest themselves in a variety of ways, such as second cancers, learning disabilities, visions and hearing problems, growth and physical maturity retardation, tiredness, and sexual development and reproduction deficiencies. Intrathecal chemotherapy (chemotherapy delivered into the spine) and radiation to the brain is linked to affecting cognitive development, especially when administered to children under five years of age (Butler, 2006).
106 childhood cancer survivors were given Weschler measures of overall intellectual ability. Their siblings also took the tests as a control measurement. The study found that the cancer survivors who had received the most intense treatment had WISC-R Full Scale IQ scores 17 points lower than the sibling control group (Cousens, et al., 1989). In another study, 74 childhood cancer survivors were split into three groups: those who received irradiation CNS treatment, nonirradiation CNS treatment, and those who did not have a cancer that affected the CNS. They were all given a set of comprehensive tests. The group that had received the irradiation CNS treatment obtained the lowest scores of all the groups. They scored significantly lower in visual-motor skills, fine motor skills, spatial memory, arithmetic achievement, and had the most difficult time concentrating (Copeland, et al., 1985).
There are a host of other ways in which the late effects can affect the patients themselves, however, some people may not realize the enormous impact childhood cancer can have on the family of the patient. The entire family must come to terms with the potentially fatal illness, make major changes in their routines, and manage to remain a family. The people in the family who often have the most difficult time coping with the situation are the parents. In an attempt to stay strong for the patient and other children in the family, parents will deny their own feelings of fear or grief. Divorce is more common in families with chronically ill child, simply because of the great amount of stress (Boujaoude, et al., 2006).
Mothers of childhood cancer patients tend to have higher levels of stress and internalized psychological distress such as depression and anxiety than the fathers. This is perhaps due to the fact that mothers tend to take on the caregiver role and are exposed more to the effects of the illness. Although mothers tend to have more, fathers of cancer patients have significantly higher psychological distress than those of healthy children (Drotar, et al., 2007). According to Kazak (2006), mothers and fathers of childhood cancer survivors have been found to have significantly higher levels of post-traumatic stress symptoms than parents of never-ill children.
While the majority of research suggests that families, and specifically parents, of cancer patients have a great deal of psychological distress, there is also research that would suggest they tend to be extremely resilient and adjust to their newfound situations rather well, if not better than parents of never-ill children (Fischer, et al., 2007).
Is there any hope for these children and their families? Fortunately, there is a growing interest in finding ways to help families cope with this life long sentence. A very exciting development comes out of the constant research being conducted by the Children’s Oncology Group; it is called long-term follow-up care (LTFU). These programs are designed to provide monitoring and managing of late effects, health education to survivors specific to their treatment, referrals to specialists, encouragement of health and wellness, assistance with psychosocial needs of survivors and family members, assistance with insurance and financial issues, guidance during transitions to different developmental stages, and survivorship research (Children’s Oncology Group, 2007).
There are a variety of models to choose from when selecting an LFTU program. The first are cancer center models, which include primary oncology care, specialized LFTU clinic, and shared care. The oncology clinic and the patient’s primary physician all play a role in these three models. The size of the role diminishes from the primary oncology care to shared care, respectively. The next category of models is called young adult transition, which consists of either a formalized transition program or adult oncology-directed care. These models are focused on the transition from childhood to adolescence and often involve referring the patient to an adult oncologist or a general practitioner if minimal risk for disease has been identified. The final three models of LFTU programs are community based care, combined approaches, and need based care. All of these models are used when the risk of cancer is quite low and the patient has entered adolescence and is approaching adulthood. As childhood cancer survivor rates continue to rise, LFTU programs are continuing to open in hospitals, clinics, and community health agencies around the country (Children’s Oncology Group, 2007).
As agencies think about implementing an LFTU program, there are a number of things they should consider before choosing what model to go with. Some questions they might ask themselves: Is it convenient for patients to continue to return to our institution? How large is the geographic area that our institution serves? How many survivors will be cared for in our institution’s program? How diverse might our survivor population be? What resources are available to our institution? It is important to ask the questions and determine which model would best serve the community that the agency is in (Children’s Oncology Group, 2007).
The University of Michigan Health System has developed a website designed to help families and psychologists understand childhood chronic illness. They list a variety of techniques to help both the patient and the family cope with the horrific diagnosis. One of the most important things to do is give information to the child. In order to keep the patient from imagining the worst, it is important to explain to him or her what a certain procedure might entail or specifically what their disease is and what it is doing to them. These explanations have to be age-appropriate, but they are important. It is also important that the family plan for procedures. Treatment and tests can often have a negative psychological effect on patients, but if they are aware of what to expect some of this trauma can be avoided (Boujaoude, et al., 2006).
Another extremely important thing for a psychologist to do and to encourage the parents to do is be hopeful. Coping with a possibly fatal disease like cancer can be scary and devastating, but hope must be kept. They should ignore their feelings of worry or concern, but they also should not dwell on them. There are a variety of other things to encourage this population to do, such as support friendships with peers, be flexible and realize limitations, try to stick to family routines as much as possible, coordinate efforts with the patient’s school, and try to have as much fun as a family as possible (Boujaoude, et al., 2006).
The advancement in cancer treatment and rise in survivorship in childhood cancer patients has opened a whole new area of concern: late effects from cancer treatment in the patient and the patient’s family. Much has been done already to assist this population with the lifetime of issues ahead of them, but much more can be done.
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