Pediatric chronic diseases--stealing childhood.

IT IS EASY TO ROMANTICIZE CHILDHOOD, ESPECIALLY IN THE middle of summer. Memories of lazy days at the beach, playing baseball or double Dutch with friends, catching lightning bugs in a jar and hopefully remembering to let them go, and having no concerns about bills to pay or time pressures or health problems. Perhaps childhood still is that way for some children, but for those with a chronic illness, life can be complicated and difficult. A child with asthma may need to take daily medication, an obese youngster may endure taunts or stares, a child with cancer may be hospitalized for extended periods of time, and concerns about bills and time and health are very real, at least for their parents. This theme issue of JAMA is devoted to the very real problem of chronic diseases in infants, children, and young adults. It is a huge topic, not only in terms of the disorders encompassed but also in the impact on children, families, and society. Consequently, only a few aspects can be covered in this issue. Perhaps the most surprising finding is that there is no clear definition of chronic health conditions in childhood. The Systematic Review by van der Lee and colleagues involving 64 articles found 4 frequently used concepts, which varied in their reliance on types of conditions, duration of disease, impact on daily activities, and requirements for services. The main distinction was between definitions based on a list of diagnoses vs those based on functional limitations resulting from various conditions. The prevalence rates in these studies ranged from 0.22% to 44%, depending on factors such as how the definitions were operationalized, who provided the information for the study, the type of data gathered, and the year of the study. The prevalence of chronic conditions in children is also addressed in a Commentary by Perrin and colleagues. The authors note that the prevalence of these ailments as a group has increased over the last decades. However, most of this expansion reflects increases in the incidence of a few conditions—obesity, asthma, and attention-deficit/ hyperactivity disorder—and is greater for minority and poor children. The reasons for the increase range from social changes to perinatal factors, from diet and physical activity to environmental exposures. Although we may not have a firm grasp on the prevalence of pediatric chronic illnesses overall, 2 studies in this issue provide new data to advance current understanding of 2 specific diseases: diabetes and cerebral palsy. The incidence of diabetes in adults has increased during the last 2 decades; however, the incidence in youth has been rarely investigated. The SEARCH for Diabetes in Youth Study involved a population-based ascertainment of new cases of physician-diagnosed diabetes mellitus in 2002 and 2003 among children and young adults younger than 20 years in 10 locations. With 2435 youth identified, the incidence of diabetes was 24.3 per 100 000 person-years. Among children younger than 10 years, most had type 1 diabetes; among older children, type 1 diabetes was also the most common, but type 2 diabetes became common especially among minority adolescents. The highest rates of diabetes (17.0 to 49.4 per 100 000 person-years) were found in minority adolescents. The authors estimate that 15 000 youth are newly diagnosed with type 1 diabetes and 3700 with type 2 diabetes in the United States annually. With few other studies available and available studies using different definitions and methods, it is difficult to compare rates between studies. It appears that the rates of diabetes in youth are increasing, but only continued surveillance will provide a clear answer. Robertson and colleagues examined changes in the prevalence of cerebral palsy in extremely premature infants over 30 years in Edmonton, Alberta, Canada. Of 858 survivors at age 2 years, 122 (14.2%) had cerebral palsy. Cerebral palsy prevalence increased from 1974 to 1994, peaking at 131 per 1000 live births in 1992-1994, and then declined to 19 per 1000 live births in 2001-2003. The trends were similar for gestational age groups of 20 to 25 weeks and 26 to 27 weeks, and importantly paralleled trends in survival. The changes did not appear to be affected by changes in other factors, such as multiple births or cesarean deliveries. These results provide some insights into the etiology of cerebral palsy and suggest that neonatologists have had some success in preventing cerebral palsy during the last 10 years.