Psychiatric sequelae in seriously ill children and their families.

Recent advances in the treatment of pediatric illnesses have transformed a number of previously fatal conditions to life-threatening but potentially survivable conditions. The new intensive regimens, however, although offering the chance of prolonged or permanent remission of the underlying disease, are also problematic. The technology and intensity of treatment can itself be highly stressful, even traumatic, both physically and psychologically for children and their parents. Survivors and their families may be left with long-term medical and psychiatric sequelae. Those who are fortunate enough to survive the initial illness may have exchanged a life-threatening illness for a chronic condition. For example, pediatric acute lymphocytic leukemia, generally fatal within months only a few decades ago, now can be treated with intensive chemotherapy and radiation resulting in a long-term survival of approximately 65%. 1 The treatment, however, involves multiple and often prolonged hospital stays; painful procedures, such as bone marrow aspirations; and months of outpatient chemotherapy. Many children require courses of daily cranial irradiation, which are usually frightening for the child, who must be separated from parents for the treatment. Parents must often take prolonged leaves of absence or quit jobs to care for the child, who is vulnerable to deadly infection or bleeding. Even after the treatment is complete, later complications, often called late effects , may emerge. The chemotherapy puts children at higher risk of other malignancies in future years, 17,35 and the cranial irradiation adds the probability of learning disabilities and a drop in overall intelligence. 12,40 Similar issues are raised by organ transplantation, another life-saving procedure recently made available to children with end-stage kidney, heart, and liver disease. Although these children have a very high chance of survival after successful transplantation, 25 they must continue on immunosuppressive drugs for the rest of their lives, putting them at risk for other malignancies. 26 Even if the new organ is performing well, survivors face the chronic problems of multiple daily medications, medical follow up, and added vulnerability to illness. Thus, the psychiatric impact of serious pediatric illness includes not only acute responses to life threat and treatment, but the psychiatric implications of the chronic difficulties and ongoing interventions that are the cost of survivorship for many conditions. Although the child is generally the most obvious focus of the various stressors, the child's family may be equally or even more affected in the long term. This article reviews what is known of the psychiatric sequelae in survivors of life-saving pediatric interventions for serious medical illnesses and their families. The relative contributions of the underlying illness and the intensive treatments that are now commonly used are examined. Potential mediators of later psychiatric complications are discussed. Finally, interventions, both for prevention and treatment, are suggested based on the current state of knowledge. Childhood cancer and organ transplantation are used as the primary examples throughout, because these represent areas of recent dramatic technical advance.