Pediatric oncology represents only a small fraction of the discipline of oncology. How-ever, the numerous advances in the diagnosis and treatment of childhood cancer have resulted in significant improvements in survival. Approximately 75% of all children diagnosed with malignant neoplasms will survive more than 5 years (Smith & GloecklerReis, 2002).
The annual incidence of childhood canceris 15.6 per 100,000 children ages birth to 19 years (U.S. Cancer Statistics Working Group,2003). There is a slightly higher incidence in males (16.5 per 100,000) compared to females (14.6 per 100,000). There are approximately 12,400 children and adolescents less than 20 years of age diagnosed each year with cancer (Smith & Gloeckler Ries, 2002).Childhood cancer is the third leading cause of death in children ages 1 to 19 years (Arias, McDorman, Strobino, & Guyer, 2003). For children of all ages, leukemia is the most frequent type of cancer, followed by brain tumors and lymphomas. Tumors of the kidney and soft tissue are more common in African Americans, whereas tumors of the bone are more common in Caucasians.
The cause of childhood cancer is not known. Some childhood cancers, in particular retinoblastoma, Wilms tumor, and neuro-blastoma demonstrate patterns of inheritance that suggest a genetic basis for the disorder. Chromosome abnormalities have been found in acute leukemia and lymphoma as well as in other pediatric solid tumors. Wilms tumor is associated with an increased incidence of congenital anomalies. Children with syndromes caused by abnormal numbers of chromosomes (e.g., Down syndrome) have an increased incidence of cancer (Gurney & Bondy, 2002). Children with immune deficiencies are at greater risk for developing cancer. Despite the lack of knowledge about the origin of cancer, there is some information on risk factors that increase the likelihood of children developing cancer. Environmental agents such as exposure to ionizing radiation have been found to cause cancer in children(Gurney & Bondy).
Major areas of pediatric oncology nursing research include psychosocial care needs, physical impact of cancer, nursing care procedures, nursing professional issues, and management of health care resources. A review by Hinds, Hockenberry, and Schum (2002) found that the majority of published studies(70%) are related to psychosocial care needs of the child and family. Only 5.5% of the published studies were on nursing care procedures, and less than 5% were on nursing professional issues. Most studies (78.2%) were published in nursing journals and of those,67% were published in cancer nursing journals. While increased attention on nursing research has occurred over the past 10 years, many areas of pediatric oncology nursing have yet to be explored.
The emphasis on psychosocial care needs of children with cancer and families has changed over the past 20 years, due to the improvement in childhood cancer survival. Nursing research in the 1980s focused on grief and loss experienced by the parents and siblings of children who died of cancer. Researchers studied how care was provided in the home care environment, the needs of parents facing the loss of a child, and terminal care costs. As survival improved, chronic ill-ness and its impact on the child and family living with a cancer took center stage. In recent years researchers have evaluated perceptions of clinical trials and nderstanding of the consent process, while continuing to evaluate stress and coping in the child and family. Adolescent risk-taking behaviors is a new research area as survival rates continue to improve and childhood cancer survivors move toward adulthood.
In order to evaluate the status of the current research on symptom management in individuals with cancer, the National Institutes of Health recently held a State of the Science Conference on Symptom Management in Cancer: Pain, Depression, and Fatigue (NIH, 2002). The review of existing research revealed that efforts to manage symptoms of cancer and its treatments have not kept pace with new advances in the causes and cures for cancer. Three landmark studies have addressed distressing cancer events and symptoms from the specific perspective of the child and their families (Hedstrom, Haglund, Skolin, &von Essen, 003; Woodgate & Degner, 2003; Collins et al., 2000). Hedstrom et al. discovered that the most common causes of distress in a group of 121 children with cancer were treatment-related pain, nausea, and fatigue. Collins et al. described the most common physical symptoms (prevalence >35%) in a group of 160 children with cancer as lack of energy, pain, drowsiness, nausea, cough, and lack of appetite. Woodgate and Degner evaluated expectations and beliefs about childhood cancer symptoms in a group of 39 children and their family members and found that these individuals expected to experience suffering as part of the cancer treatment. The families felt unrelieved or uncontrolled symptoms were necessary for cure. Nurse researchers have evaluated pain management issues, complications of central venous access, blood product infusion methods, and chest tube care.
Also, a relatively new area of symptom management research focus is the evaluation of fatigue in children and adolescents with cancer. Fatigue has been found to be one of the most distressing symptoms experienced during childhood cancer treatment. The prevalence of this symptom confirms the need to explore the interrelationships between fatigue and other symptoms commonly experienced by children with cancer. This symptom has been evaluated from both qualitative and quantitative research perspectives. Fatigue measurement instruments have been developed and tested during the past 5 years. Multi-center trials have been implemented to evaluate this symptom in children with cancer.
As survival for childhood cancer continues to improve, nursing investigations are focusing on survivorship issues and quality of life following the diagnosis and treatment of cancer. Nursing studies have documented the adverse effects of central nervous system (CNS) treatment on cognitive, academic, and psychosocial functioning. Interventions designed to minimize the adverse effects of central nervous system therapy are now being conducted.
Docherty (2003) recently completed a review of the published literature on symptom experiences of children and adolescents with cancer. This review revealed no longitudinal symptom management study designs, limited use of conceptual models or theories, frequent adaptation of adult instruments as symptom measures, and no attention to the impact of these symptoms on the children’s lives.
It is evident from the recent childhood cancer pain literature that there is still much to be gained from continued research. The importance of striving for symptom relief in children cannot be over emphasized. Recognition and acknowledgment of the beliefs and expectations of children and their parents regarding cancer-related symptoms (Wood-gate & Degner, 2003) should continue to be a major research focus. Limited research is found regarding assessment of pain in children with cancer. Longitudinal studies evaluating the trajectory of pain over time are not found. The effective use of pain management teams in hospital settings and their relationship with cancer center staff need further development and evaluation. Continued exploration of the most effective drug regimens and methods of delivery should be pursued for children experiencing all types of cancer pain. Finally, utilization of research findings in the clinical setting is lacking. More innovative, creative methods for dissemination of our knowledge of cancer pain and its management must be explored.