Addressing the needs of dying children- a benchmark of societal compassion and a gauge of health care quality-rises as a challenge for the 21st century. As deaths due to injury, prematurity, and sudden infant death syndrome are prevented, the remaining deaths may be increasingly associated with chronic conditions. I hypothesize that deaths attributable to complex chronic conditions (CCCs) constitute an increasing proportion of all pediatric deaths, both at a population level and more specifically among patients cared for by children's hospitals, and that the prolongation of life has led to a rising prevalence of these conditions. Furthermore, I postulate that quality of care and support for these dying children and their families deteriorates over the last two years of life, with declining continuity of care and untimely referral to hospice and other social support services. This five-year research plan will profile the needs of dying children specifically aiming to: 1. Determine whether the prevalence of terminal congenital CCCs is rising in the national population. 2. Measure the change in prevalence of children with terminal CCCs in tertiary children's hospitals, thereby assessing the magnitude of need for hospital-based pediatric palliative care services. 3. Test whether the 'intensity' of medical care increases in the 30-day interval prior to the day on which death compared to the preceding 23 month interval, so as to improve clinicians prognostic inferences regarding likelihood of death. 4. Examine two markers of quality of care of children with CCCs by: Testing whether the continuity of care deteriorates in the last two years of life for children with CCCs; and 5. Examining the timing of referral to hospice. This research seeks to improve the care and health policy for dying children in three ways. First, evidence of a 'epidemiological transition' in pediatric mortality-from mostly accidental and sudden death to deaths that occur somewhat inevitably with a longer yet unpredictable dying process-would motivate the redesign of pediatric health care services and physician training at both the regional and national level. Second, this research will produce several techniques to monitor health utilization data for indicators of the quality of care provided to terminally ill children. Finally, the results of these studies will ultimately inform the development and trial of a longitudinal needs assessment program for children with complex chronic conditions. These studies of the epidemiology of pediatric death and the needs of dying children will help enhance the individual care provided to these children and their families as well as broader policy. They will also foster the development of the applicant's research skills so as to become an independent researcher addressing the needs of children with complex chronic conditions.
