Position statement for the need to define pediatric hematology/oncology programs: A model of subspecialty care for chronic childhood diseases

The children and young adults cared for by pediatric hematology/oncology services usually have life-threatening, chronic diseases and treatment is expensive, specialized, and evolving. These patients' outcomes are best when they are managed at centers with up-to-date treatment that are experienced in the investigation of these conditions. In many instances, the CPHOP may be the principal health care provider for these patients. As defined here, CPHOPs should be responsible for directing the assessment, diagnosis, treatment, and follow-up for children and adolescents with cancer and serious blood disorders. This includes initial diagnosis, treatment, and long-term follow-up for these patients. The pediatric hematologist/oncologist is responsible for the coordination of services through a multidisciplinary team approach, which includes an active partnership with primary care providers, government agencies, insurers, and consumers. When such a plan for shared treatment is undertaken, communication between the primary care physician and hematologist/oncologist must be available 24 hours a day, 7 days a week to assure that appropriate implementation of the treatment plan and management of complications or recurrence is carried out. Historically, pediatric hematologist/oncologists have essentially used a 'primary care approach' for the treatment and follow-up of children with cancer and serious blood disorders. In this regard, they have been the central persons coordinating the comprehensive health care, and have served as 'gatekeepers' for the referral to other specialists when their expertise was needed. This has been particularly important in the coordination of care for patients from large rural areas who may be many miles from a CPHOP. Although the primary care physician remains important in the care of these children, it remains critical that the overall coordination in most instances for the care be from CPHOPs. In more rural areas, the need for this type of coordination of care and outreach services is further underscored. The goals of these recommendations are to provide the optimal medical outcome for all affected children, including maximal function of the child as an adult; to develop provisions of cost effective care; to incorporate new therapies as they become available; and to advance our knowledge of these disorders to insure future improvements of care. These guidelines have been recommended based on the historical success of comprehensive, controlled and cost effective approaches for the care of children and young adults with cancer and serious blood disorders. Standards of care should be defined by the consensus of groups such as the American Academy of Pediatrics, ASPH/O, CPHOPs, National Institutes of Health programs, primary care providers, insurers, and consumers. This scenario is not unique to patients with cancer and serious blood disorders. Today, approximately 1 in 30 children have some type of chronic illness which may vary from mild to severe. Medical care for such patients may frequently be fragmented and without systematic collection of important diagnostic, treatment, and outcome data. In addition, because of some commonality of the care of children with chronic illnesses, some overlap of both medical and nonmedical personnel and resources is expected for the care of patients with different diseases. For example, a complication may develop in a pediatric oncology patient while he or she is at home. The child is brought to the Hematology/Oncology clinic where the complication is diagnosed by a pediatric hematologist/oncologist, but the complication may require the services of another subspecialist. Unless the complication is life-threatening or it would be dangerous to delay treatment, the patient is brought back to a different clinic at another time in many instances. This pattern of care is quite common in both pediatric and adult hospital or clinic settings; however, it is inconvenient for the patient and family and not cost effective. The availability and sharing of general medical and subspecialty care surrounding selected chronic illnesses would provide more efficient and improved patient care. Thus, comprehensive centers caring for patients with chronic illnesses would need to link their efforts together in areas where the type of care overlaps, when same-day care is optimal, and for sharing data in terms of outcome measures. The effective utilization and integration of such specialized programs linked to primary care providers and in partnership with governmental agencies, insurers, and consumers will ensure continued improvements in the quality and cost of care through research and education (36).