Journal of Pediatric Nursing
Volume 23, Issue 4 , Pages 237-240, August 2008

Forthcoming Issues to Confront as Children and Youth With Special Health Care Needs Grow Up

Journal of Pediatric Nursing, Los Angeles, CA

Article Outline

 

MORE RECENTLY, GREATER attention has been directed to the projected mounting costs of health care for children and youth with chronic illnesses and disabilities and adults with childhood-acquired chronic conditions and disabilities.1 The future consumption of health care resources and social services as forecasted by policymakers and experts have serious implications not only for this population of individuals with special needs and their families but also to professionals who provide their care and the policymakers and advocates who will exercise the political will needed to ensure that the allocation of funds is available (Kuhlthau et al., 1998, Liptak et al., 2006, Liptak et al., 2006, Perrin et al., 2007, Perrin et al., 1998). This is an important issue that warrants serious consideration by the stakeholders who will be most impacted by this significant health care and social issue.

Several national surveys, although using differing methodological approaches in collecting data, indicate that the prevalence of children and youth with chronic illnesses and disabilities is increasing. One of the national surveys, the National Survey of Children with Special Health Care Needs (NS-CSHCN), collects data on the prevalence of children with special health care needs and their needs for and use of health services (Child and Adolescent Health Measurement Initiative, 2007). Children included in this survey represent a broad base of children and youth “who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and also require health and related services of a type or amount beyond that required by children generally” (McPherson et al., 1998, van Dyck et al., 2004). Survey data from 2001 and 2005–2006 NS-CSHCN indicate that children and youth with special health care needs and disabilities are increasing (van Dyck et al., 2004). The most recent NS-CSHCN conducted in 2005–2006 demonstrated a growth of 1% in the prevalence rate of 13.9%, amounting to 10.2 million children and youth, as compared with 12.8% in 2001, amounting to 9.4 million children and youth (Child and Adolescent Health Measurement Initiative, 2007, van Dyck et al., 2004). Over this period of 5 years, the number of children and youth with special health care needs increased by 1.1%, amounting to approximately 800,000 more children and youth with special health care needs.

The National Health Interview Survey reports prevalence data based on the definition of a disability as a “limitation of activity due to chronic physical, mental or emotional conditions…[with] specific limitations in activities in activities such as play, self-care, walking, memory, and other activities, and the current use of special education or early intervention services” (National Center for Health Statistics, 2007, p. 42). Findings from this survey also revealed an increase in the prevalence rates of children with chronic conditions. Since 1960, the prevalence rate of children with a disability has increased from 1.8% to more than 7%, amounting to more than 5 million children (Perrin et al., 2007, National Center for Health Statistics, 2007). As both of these national surveys indicate, the prevalence rates have increased significantly and have very important consequences for pediatric health care and, in the future, for the costs of adult care and social services.

A number of factors account for the increased prevalence rates. The medical advances in creating curative and life-sustaining treatments have contributed to the increase in the life expectancies of individuals with childhood-acquired chronic conditions and disabilities (Hogan et al., 1997, Newacheck & Halfon, 1998, Reiss & Gibson, 2006). Now, children diagnosed with acute lymphoblastic leukemia, cystic fibrosis, and sickle cell disease are expected to survive well into adulthood, reaching the middle-age years and beyond (Cystic Fibrosis Foundation, 2007, Sickle Cell Disease Association of America, 2005, 2006; Viscomi et al., 2006). Other factors contributing to increased prevalence rates include perinatal and environmental factors such as inadequate prenatal care, low socioeconomic neighborhoods with housing structures not in conformity with building codes, and increased incidence of criminal activities resulting in life-threatening and disabling injuries (Perrin et al., 2007). Examples of changes associated with the increase in the prevalence rate provide interesting insights. Type 2 diabetes, a chronic condition typically associated only with adults, is now being observed in children. This increase is attributed to the rising numbers of children and adolescents who are overweight, wherein the prevalence has increased considerably (Gilliam et al., 2007). Nearly 20% of American children and youth aged 6 to 19 years are overweight. Fourteen percent of children aged 2 to 5 years are overweight, representing double the percent of children just a decade ago (National Center for Health Statistics, 2007).

Although children and youth with special health care needs represent a small percentage of the nation's population of children, the proportion of expenditures for their health care is estimated to be 60%, of which half are for the costs of hospitalization (Silber, Gleeson, & Zhao, 1999). Another analysis of the health care expenditures of children with high health care costs, estimated to be 7.2% to 12.4% of the beneficiaries enrolled in the Supplemental Security Income program, accounted for 63.4% to 81% of the Medicaid expenditures (Kuhlthau et al., 1998).

The national Medical Expenditure Panel Survey (MEPS), jointly sponsored by the Agency for Healthcare Research and Quality and the National Center for Health Statistics, is designed to collect data pertaining to health care utilization and expenditures in the United States. Analysis of data from 2000 and 2001 MEPS revealed that the top 10% of children accounted for 54% of all health care expenditures, with mean expenditures amounting to nearly $6,500 per child. For those children in the top 1%, the mean expenditures amounted to nearly $29,000. Furthermore, the top 25% of children accounted for three quarters of all health care expenditures in 2000. In contrast, children representing the lower half accounted for 8% of total expenditures. Forty-nine percent of children were in the top decile in both 2000 and 2001 (Ireys et al., 1997, Liptak et al., 2006).

Closer examination of the cost of care for specific chronic conditions is useful to better understand the causes for the escalation of health care costs. The annual costs of health care for children with autism spectrum disorder (ASD) were nearly 8 times higher than those for other children ($6,132 vs. $860; Liptak, Stuart, et al., 2006). The lifetime costs of care for children with ASD have been estimated at $1,609,000 (Landrigan, Schechter, Lipton, Fahs, & Schwartz, 2002). Estimates of the lifetime costs for intellectual disability (formerly referred to as mental retardation) and cerebral palsy have been approximated at $1,680,000 and $1,479,000, respectively (Landrigan et al., 2002). In 2002, the financial impact associated with diabetes was estimated to be $132 billion (Hogan, Dall, Nikolov, & American Diabetes, 2003). Annual costs of childhood cancer were $0.3 billion and $2 billion for pediatric asthma (Landrigan et al., 2002).

Rates of hospitalization have increased considerably since 1962, which is attributable in significant measure to the costs of care for hospitalization of children with chronic conditions and disabilities (Feudtner et al., 2005, Seferian et al., 2006). Fifty percent of expenditures for children with special health care needs are allocated for hospitalization. It is likely that the hospitalization costs will continue to rise and become a larger proportion of health care expenditures for children, given the continuing increases in the prevalence of children with special health care needs (Child and Adolescent Health Measurement Initiative, 2007). One factor contributing to the rising pediatric hospital costs is the increased rates of children on mechanical ventilation, doubling from 1991 to 2001, reflecting the higher level of acuity of hospitalized children. The incidence of mechanical ventilation was 77 per 1,000 hospitalizations in 1991, in contrast to 124 per 1,000 hospitalizations in 2001 (Seferian et al., 2006). Again, the significant increase in children requiring mechanical ventilation was due to the increased number of children with chronic illnesses (Feudtner et al., 2005, Seferian et al., 2006).

The increased prevalence of children and youth with chronic illnesses and disabilities is associated with increased costs associated with long-term consequences of living with a chronic condition. Study findings of the early risk factors associated with type 1 and 2 diabetes and the late effects associated with childhood cancer are illustrative.

Data from the multisite study of children and youth with type 1 and type 2 diabetes, entitled the SEARCH for Diabetes in Youth Study, reveal the early risk factors (high blood pressure, high triglyceride levels, low HDL cholesterol level, and high waist circumference) for cardiovascular disease (CVD) in children aged 19 years and younger. The prevalence of two or more CVD risk factors was found to be 7% in children aged 3 to 9 years and 23% in children aged 10 to 19 years. The highest prevalence of CVD risk factors was found in children and youth with type 2 diabetes. The prevalence was found to be higher in ethnically diverse children as well (Rodriguez et al., 2006).

In other findings generated from the SEARCH for Diabetes in Youth Study cohort, involving 3,259 youth with type 1 and type 2 diabetes, researchers found that those with type 2 diabetes demonstrated early risk factors (elevated albumin-to-creatinine ratio) for later serious diabetic complications of nephropathy and CVD (Maahs et al., 2007). As experts have speculated, the early onset of type 2 diabetes could lead to sooner onset of morbidity and mortality (Maahs & Daniels, 2007).

Follow-up studies of cancer survivors demonstrated that they experience adverse events ranging from to life threatening and disabling (Geenen et al., 2007). A long-term study of 1,362 cancer survivors found that 23.4% (n = 301) experienced either two severe or one life-threatening or disabling event. Sixty-four percent of survivors of bone tumors were most significantly affected, whereas those with leukemia and Wilms tumor (12%) were least affected. In addition, those who were treated with radiotherapy were significantly affected, with 55% of them having experienced high or severe burden of adverse events. These adverse events were described as impacting neurologic functioning; creating infertility problems; and resulting in the emergence of a second malignancy, cardiovascular or peripheral vascular event, and cognitive problems. Also included are obesity and psychosocial problems (Geenen et al., 2007).

Lastly, federal expenditures for services and programs for children and adults with disabilities are costly, with the annual expenditures estimated to be as high as $300 billion. As experts have cited, the projected costs associated with the growth of these programs are not sustainable for the long-term (U.S. General Accounting Office [GAO], 1998). The profile of federal expenditures for disability-related programs is 50% for health care, 42% for income support (Supplemental Security Insurance), and 1% to 3% for employment training (U.S. GAO, 1998). In addition, the psychosocial comorbidities such as depression and other mental health problems associated with chronic conditions and disabilities can adversely affect level of functioning, resulting in increased rates of unemployment, decreased work productivity, and limited community involvement (Lawrence et al., 2005).

The enormity of the challenges ahead in addressing these issues cannot be underestimated. It is important that the collective of stakeholders undertakes the leadership and advocacy needed to not only generate innovative approaches related to preventive care but also to address the concerns associated with the long-term morbidities associated with childhood chronic illnesses and disabilities and childhood-acquired chronic conditions in adults. Large-scale federal initiatives similar with the early intervention programs implemented for infants and toddlers at risk for and with disabilities are needed.

Coalitions of pediatric and child health nurses are needed to address these concerns and provide the leadership to effect important changes in health and community settings for services and programs for this population of children and youth. Partnerships with our nursing colleagues who provide clinical services, educate nursing students, and generate research on the care needs of adults with childhood-acquired chronic conditions are needed as well. An interesting finding was that, in medicine, the need for practice partnerships between pediatric and adult medical specialists is recognized, and new models have emerged, creating new practice models such as physicians with adult medicine and pediatric specialists to address the needs of youth and adults with special health care needs. It is an opportune time for pediatric and child health nurses to develop and implement new models of practice, training, and research.

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  • 1 For the purposes of this editorial, special health care needs, chronic conditions, chronic illnesses, and disabilities will refer to the same population unless otherwise specified as in distinguishing terminology for data reporting purposes.

PII: S0882-5963(08)00208-X

doi:10.1016/j.pedn.2008.04.005

Journal of Pediatric Nursing
Volume 23, Issue 4 , Pages 237-240, August 2008

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