Jill S. Halterman

Psychological Functioning and Coping Among Mothers of Children With Autism: A Population-Based Study

OBJECTIVES. Studies suggest that having a child with autism has a negative impact on maternal psychological functioning, but no large-scale, population-based studies are available. The objectives of this study were to (1) describe the psychological functioning, physical and mental health, family communication, and parenting support of mothers of a child with autism compared with other mothers on a population basis and (2) assess the independent relationship between having a child with autism and these outcomes, controlling for the childs social skills and demographic background. METHODS. Mothers of 61772 children who were 4 to 17 years of age were surveyed by the National Survey of Childrens Health, 2003. Autism was measured from an affirmative maternal response to the question, “Has a doctor or health professional ever told you your child has autism?” There were 364 children with autism in the sample. RESULTS. Mothers of a child with autism were highly stressed and more likely to report poor or fair mental health than mothers in the general population, even after adjustment for the childs social skills and demographic background. However, mothers of a child with autism were more likely to report a close relationship and better coping with parenting tasks and less likely to report being angry with their child after adjustment for the childs social skills and demographic background. Having a child with autism was not associated with lower social support for parenting, an altered manner in which serious disagreements were discussed in the household, or increased violence in the household. CONCLUSION. Mothers of children with autism showed remarkable strengths in the parent–child relationship, social support, and stability of the household in the context of high stress and poorer mental health.

Parental beliefs about medications and medication adherence among urban children with asthma.

BACKGROUND Although national guidelines recommend controller medications for children with persistent asthma, adherence is poor. Prior studies have begun to explore parental beliefs regarding controller asthma medications and their effect on adherence. OBJECTIVE To describe parental beliefs about controller medications among a community-based sample of urban children with persistent asthma and to examine the relationship between parental beliefs and adherence. DESIGN/METHODS Parents of 150 children with asthma completed a telephone survey as part of a larger asthma intervention. Parents of children using controller asthma medications were included in this study. A previously validated Beliefs About Medications Questionnaire (BMQ) was used, which included two subscales: necessity and concern. The relationship between parental beliefs about medications and medication adherence was assessed using bivariate linear regression and multivariate statistics. RESULTS This study included 67 children with parental report of controller medication (54% male, 61% African American, 69% Medicaid). Overall, 75% of parents strongly believed that their childs medications were necessary for their health and 34% had strong concerns about the medications. Only 22% of parents reported being completely adherent with medications. Parents with greater concern about medications were more likely to have poor adherence (P < .05). In a multivariate analysis, including both BMQ subscales and asthma severity, concern about medications significantly predicted poor medication adherence (P = .03). CONCLUSIONS Parental concerns about controller medications were associated with poor medication adherence for this population of urban children with asthma. These findings highlight the importance of addressing parental concerns at the time of medication prescription.

Prescribing of Controlled Medications to Adolescents and Young Adults in the United States

OBJECTIVE: The nonmedical use of prescription drugs by adolescents and young adults has surpassed all illicit drugs except marijuana, yet little is known about prescribing patterns. We examined the prescribing of controlled medications to adolescents aged 15 to 19 and young adults aged 20 to 29. METHODS: We used cross-sectional data from the National Ambulatory Medical Care Survey (N = 4304 physicians) and the National Hospital Ambulatory Medical Care Survey (N = 2805 clinics; N = 1051 emergency departments) between 2005 and 2007. We also used consecutive data from 1994 to describe trends. RESULTS: A controlled medication was prescribed at 2.3 million visits by adolescents and 7.8 million visits by young adults in 2007. Between 1994 and 2007, controlled medications were prescribed at an increasing proportion of visits from adolescents (6.4%–11.2%) and young adults (8.3%–16.1%) (P < .001 for trend). This increase was seen among males and females, in ambulatory offices and emergency departments, and for injury-related and non–injury-related visits (all P < .001). A controlled medication was prescribed during 9.6% of all adolescent visits and 13.8% of young-adult visits for non–injury-related indications and at 14.5% of adolescent visits and 27.0% of young-adult visits for injury-related reasons. Controlled medications were prescribed at a substantial proportion of visits for common conditions, such as back pain, to both adolescents (23.4%) and young adults (36.9%). CONCLUSIONS: Controlled medications are prescribed at a considerable proportion of visits from adolescents and young adults, and prescribing rates have nearly doubled since 1994. This trend and its relationship to misuse of medications warrants further study.

Association of Childhood Autism Spectrum Disorders and Loss of Family Income

BACKGROUND. Parents of children with autism have significant out-of-pocket expenditures related to their childs care. The impact of having a child with autism on household income is not known. OBJECTIVE. The purpose of this work was to estimate the loss of household income associated with childhood autism using a nationally representative sample. METHODS. Parents of 11684 children enrolled in kindergarten to eighth grade were surveyed by the National Household Education Survey-After School Programs and Activities in 2005. An autism spectrum disorder was defined as an affirmative response to the questions, “has a health professional told you that [child] has any of the following disabilities? 1) autism? 2) pervasive developmental disorder or PDD?” There were 131 children with autism spectrum disorder in the sample and 2775 children with other disabilities. We used ordinal logistic regression analyses to estimate the expected income of families of children with autism given their education level and demographic characteristics and compared the expected income with their reported income. RESULTS. Both having a child with autism spectrum disorder and having a child with other disabilities were associated with decreased odds of living in a higher income household after controlling for parental education, type of family, parental age, location of the household, and minority ethnicity. The average loss of annual income associated with having a child with autism spectrum disorder was

Ambulatory Care Among Young Adults in the United States

6200 or 14% of their reported income. CONCLUSION. Childhood autism is associated with a substantial loss of annual household income. This likely places a significant burden on families in the face of additional out-of-pocket expenditures.

Access to and Satisfaction With School and Community Health Services for US Children With ASD

Context Little is known about how young adults 20 to 29 years of age use ambulatory medical care. Contribution The authors found that young adults have fewer ambulatory care visits than adolescents or adults 30 to 39 years of age. In addition, young adults who are male, black, or Hispanic have fewer visits than other young adults. Implication Young adults underutilize ambulatory care relative to other age groups. The Editors Young adults face many of the same health care challenges as adolescents, yet fewer resources are available to care for this patient population (1). Although the mortality rate among young adults is more than twice that among adolescents, young adults remain the most likely age group to be uninsured (2, 3). Approximately one third of young adults are uninsured, which hinders access to care and results in delayed treatment and difficulty filling prescription medications (2, 3). The prevalence of homicide, motor vehicle accidents, substance abuse, and sexually transmitted diseases (STDs) all peak in young adulthood (1, 4, 5). Compared with adolescents, young adults have 3 times the suicide rate; nearly 3 times the incidence of HIV; and higher rates of smoking (41.8% vs. 12.4), binge drinking (41.8% vs. 9.7%), and illicit drug use (19.7% vs. 9.5%) (1, 5). Similarly, young adults have considerably higher rates of STDs, illicit drug use, alcohol use, and tobacco use than older adults (4, 5). Finally, young adults have the highest rate of serious psychological distress among all adults (17.9%), yet fewer than half (46.9%) of those with a major depressive episode receive treatment (5, 6). Healthy People 2010 established several national objectives, including reducing mortality, alcohol- and drug- related injuries, motor vehicle accidents, and the incidence of STDs among young adults (7, 8), yet where young adults are receiving care and what preventive services are being provided to help reach these goals are unclear. Although several studies have described health care in adolescents (911), little is known about ambulatory care of young adults. A comprehensive understanding of where young adults access care and what preventive services are provided are needed to guide future initiatives toward improving health care for young adults and achieving the national objectives. We used data from the National Ambulatory Medical Care Survey (NAMCS) and National Hospital Ambulatory Medical Care Survey (NHAMCS) between 1996 and 2006 to characterize ambulatory medical care among young adults age 20 to 29 years. We sought to compare health care utilization among young adults with that among adolescents and older adults, to describe ambulatory medical care of young adults (types of visits, reasons for visits, and sites of care), and to examine the provision of preventive care to young adults. On the basis of studies in adolescents (11, 12), we hypothesized that young adults utilize health care less than other age groups and infrequently receive age-appropriate preventive care directed at the most common threats to their health. Methods This study was approved by the University of Rochester Research Subjects Review Board under exempt status (RSRB00026060). Design of the NAMCS and NHAMCS The NAMCS is a national cross-sectional survey of patient visits to nonfederal, office-based physicians in the United States. Similarly, NHAMCS is a cross-sectional survey of patient visits to outpatient departments of general and short-stay hospitals. The surveys both utilize a multistage probability design to select a stratified systematic sample of patient visits and use visit weights to extrapolate these encounters to estimates of national utilization of ambulatory medical services (13). The NAMCS uses a 3-stage sampling design based on geographic area, physician practices within the area, and patient visits within the practice (13). The NHAMCS uses a 4-stage probability design based on geographically defined areas, hospitals within these areas, clinics within the outpatient departments, and patient visits to these clinics (14). A comprehensive explanation of the methods used for data collection, sampling, and weighting in NAMCS and NHAMCS are available online at www.cdc.gov/nchs/about/major/ahcd/ahcd1.htm. The protocols used by NAMCS were approved by the National Center for Health Statistics Institutional Review Board (15). Creation of Variables We defined young adults as people between 20 and 29 years of age. We chose this age range because it represents a period when many people lose their insurance coverage, it conforms to census data, and it is commonly used by insurers to determine the number of reimbursable visits for preventive care (16). To ensure that our findings were not dependent on the definition of young adult, we also ran our key analyses after redefining young adults as people 18 to 24 years of age. To focus our analyses and allow for sex comparisons, we excluded all visits related to pregnancy. We estimated utilization rates by using visit data from NAMCS and NHAMCS and population data from the U.S. Census (17, 18) between 2000 and 2006 to calculate the number of annual visits per capita for adolescents, young adults, and older adults, stratified by sex, race, and ethnicity. We used the American Community Survey March Supplements between 2001 and 2007 (in which data are reported for the previous year, that is, 2000 to 2006) to obtain the proportion of young adults without insurance during this period (dataferrett.census.gov). We used data from NAMCS and NHAMCS between 1996 and 2006 to characterize types of visits from young adults (acute, chronic, or preventive), the locations where young adults receive care, the specialties of providers seen, and the counseling rendered to young adults during office visits. The NAMCS and NHAMCS recorded the major reason for the patient visit as acute problem; chronic problem, routine; chronic problem, flare-up; pre/post-surgery; and preventive care. We combined the 2 chronic problem visits in our analysis because both represent similar types of visits for management of chronic disease. We used the reason for visits classification codes to tabulate the principal reason for the ambulatory encounter. If the principal reason for the visit was listed as a follow-up visit or an administrative visit or could not be coded, we used the secondary reason for the visit. We defined primary care physicians to include physicians practicing in internal medicine, pediatrics, family practice, general practice, general preventive medicine, or public health and general preventive medicine. We defined public insurance as Medicaid or Medicare and uninsured visits as those with payment listed as no charge, charity care, or self-pay. Statistical Analysis We performed all statistical tests and variance estimates by using SAS, version 9.1 (SAS Institute, Cary, North Carolina), and SAS-callable SUDAAN (Research Triangle Institute, Research Triangle Park, North Carolina) functions to appropriately weight visits and account for the complex sampling design (19). All proportions were compared by using an adjusted Wald F test that accounted for the complex sampling design. We did not include data with missing type of visit (2.6%), missing payment type (1.4%), missing reason for visit (6.3%), uncodeable reason for visit (<0.1%), or visit for administrative reason (<0.1%) in analyses involving these variables. The National Center for Health Statistics considers estimates reliable if the relative SE is less than 30% of the point estimate and considers estimates derived from fewer than 30 total visits unreliable regardless of the relative SE (13). All values reported are based on 30 or more visits, unless otherwise noted. All tests are 2-tailed, and a P value less than 0.05 was considered statistically significant. Role of the Funding Source This study was not supported by extramural funding. Results Between 1996 and 2006, 14599 physicians (67.3% of eligible physicians) participated in NAMCS. During the same period, 4363 hospitals participated in NHAMCS, representing a 94.0% overall participation rate. A total of 52709 unweighted visits were recorded by young adults between 1996 and 2006. Table 1 reports weighted characteristics of the data. Table 1. Ambulatory Care Visits by Young Adults Age 20 to 29 Years Between 1996 and 2006, by Patient Characteristic Utilization of Ambulatory Care Figure 1 shows utilization rates among different age groups of white, black, and Hispanic males and females. For males, utilization rates were highest among children and older men, and the lowest utilization rates were seen among young men. Young men had lower rates of annual utilization of ambulatory medical care per capita (1.10 [95% CI, 1.06 to 1.15] annual visits per capita) than male adolescents age 15 to 19 years (1.65 [CI, 1.60 to 1.70]) or older men age 30 to 39 years (1.73 [CI, 1.67 to 1.79]) (Appendix Table). Young men had less than half the rate of per-capita utilization than young women (1.10 [CI, 1.06 to 1.15] vs. 2.31 [CI, 2.26 to 2.35]) (Appendix Table). For both males and females, black and Hispanic individuals had lower utilization than white individuals. Figure 1. Per-capita annual ambulatory care utilization between 2000 and 2006, by age group. Appendix Table. Per-Capita Annual Ambulatory Health Care Visits by Adolescents and Adults, 2000 to 2006 Table 2 shows utilization rates for young adults with and without health insurance. Young adults with insurance had more than triple the rate of health care utilization than those without insurance. In addition, among insured and uninsured young adults, men had lower rates of utilization than women and black men had lower rates of utilization than white men. Table 2. Per-Capita Annual Ambulatory Care Visits by Young Adults Age 20 to 29 Years Between 2000 and 2006, by Insurance Status Types of Visits Figure 2 shows visits per capita for acute problems, chronic problem

Randomized Controlled Trial to Improve Care for Urban Children With Asthma: Results of the School-Based Asthma Therapy Trial

OBJECTIVE: Our objective was to compare access to and satisfaction with school and community health resources among families with a child with an autism spectrum disorder (ASD) and families of other children with special health care needs (CSHCN). METHODS: Parents of 40256 children aged 0 to 17 were surveyed by the 2005–2006 National Survey of Children With Special Health Care Needs. Autism was defined by the question, “To the best of your knowledge, does (child) currently have autism or autism spectrum disorder, that is, ASD?” We used χ2 and multivariate regression analyses to compare access to and satisfaction with services for parents of children with ASDs and parents of other CSHCN. RESULTS: Children with ASDs (n = 2123) comprise 5.4% of the CSHCN. More parents of children with ASDs reported difficulty using school and community services (27.6% vs 9.7%) and dissatisfaction (19.8% vs 7.9%) than parents of other CSHCN. Multivariate models determined that parents of children with ASDs were 3.39 times more likely to experience difficulty in obtaining services and 2.65 times more likely to be dissatisfied with services received than parents of other CSHCN, after controlling for household demographics and insurance status. Parents of children with ASDs reported a lack of available services and skilled providers. CONCLUSIONS: Parents of children with ASDs reported less access to and more dissatisfaction with school and community health services than parents of other CSHCN. An increased supply of appropriate services with qualified providers for children with ASDs is needed in the United States.

Child Care Problems and Employment Among Families With Preschool-Aged Children With Autism in the United States

OBJECTIVE To evaluate the impact of the School-Based Asthma Therapy trial on asthma symptoms among urban children with persistent asthma. DESIGN Randomized trial, with children stratified by smoke exposure in the home and randomized to a school-based care group or a usual care control group. SETTING Rochester, New York. PARTICIPANTS Children aged 3 to 10 years with persistent asthma. INTERVENTIONS Directly observed administration of daily preventive asthma medications by school nurses (with dose adjustments according to National Heart, Lung, and Blood Institute Expert Panel guidelines) and a home-based environmental tobacco smoke reduction program for smoke-exposed children, using motivational interviewing. MAIN OUTCOME MEASURE Mean number of symptom-free days per 2 weeks during the peak winter season (November-February), assessed by blinded interviews. RESULTS We enrolled 530 children (74% participation rate). During the peak winter season, children receiving preventive medications through school had significantly more symptom-free days compared with children in the control group (adjusted difference = 0.92 days per 2 weeks; 95% confidence interval, 0.50-1.33) and also had fewer nighttime symptoms, less rescue medication use, and fewer days with limited activity (all P < .01). Children in the treatment group also were less likely than those in the control group to have an exacerbation requiring treatment with prednisone (12% vs 18%, respectively; relative risk = 0.64; 95% confidence interval, 0.41-1.00). Stratified analyses showed positive intervention effects even for children with smoke exposure (n = 285; mean symptom-free days per 2 weeks: 11.6 for children in the treatment group vs 10.9 for those in the control group; difference = 0.96 days per 2 weeks; 95% confidence interval, 0.39-1.52). CONCLUSIONS The School-Based Asthma Therapy intervention significantly improved symptoms among urban children with persistent asthma. This program could serve as a model for improved asthma care in urban communities.

Increased ultrafine particles and carbon monoxide concentrations are associated with asthma exacerbation among urban children

BACKGROUND. The impact of childhood autism on parental employment is largely unknown. OBJECTIVE. The purpose of this work was to describe the child care arrangements of children with autism and to determine whether families of preschool-aged children with autism are more likely to report that child care arrangements affected employment compared with typically developing children and children at high risk for developmental problems. METHODS. Parents of 16282 preschool-aged children were surveyed by the National Survey of Childrens Health. An autism spectrum disorder was defined as an affirmative response to the question, “Has a doctor or health professional ever told you that [child] has any of the following conditions? Autism?” There were 82 children with autism spectrum disorder in the sample, and 1955 children at high risk on the basis of the Parents Evaluation of Developmental Status. We used χ2 and multivariate logistic regression analyses. RESULTS. Ninety-seven percent of preschool-aged children diagnosed with autism spectrum disorder were cared for in community settings, particularly preschool and Head Start, with only 3% in exclusive parental care. Thirty-nine percent of the parents of children with autism spectrum disorder reported that child care problems had greatly affected their employment decisions, compared with 16% of the children at high risk and 9% of those who were typically developing. In multivariate analyses, families with a child with autism spectrum disorder were 7 times more likely to state that child care problems affected employment than other families, after controlling for household and child covariates. This effect was 3 times larger than the effect of poverty. CONCLUSIONS. Developmental problems and autism spectrum disorder are associated with higher use of child care services and higher probability that child care problems will greatly affect employment. These findings warrant evaluation of the community resources available to families with children with special needs.

The impact of the parental illness representation on disease management in childhood asthma.

OBJECTIVES Increased air pollutant concentrations have been linked to several asthma-related outcomes in children, including respiratory symptoms, medication use, and hospital visits. However, few studies have examined effects of ultrafine particles in a pediatric population. Our primary objective was to examine the effects of ambient concentrations of ultrafine particles on asthma exacerbation among urban children and determine whether consistent treatment with inhaled corticosteroids could attenuate these effects. We also explored the relationship between asthma exacerbation and ambient concentrations of accumulation mode particles, fine particles (≤2.5 micrograms [μm]; PM2.5), carbon monoxide, sulfur dioxide, and ozone. We hypothesized that increased 1-7 day concentrations of ultrafine particles and other pollutants would be associated with increases in the relative odds of an asthma exacerbation, but that this increase in risk would be attenuated among children receiving school-based corticosteroid therapy. METHODS We conducted a pilot study using data from 3 to 10 year-old children participating in the School-Based Asthma Therapy trial. Using a time-stratified case-crossover design and conditional logistic regression, we estimated the relative odds of a pediatric asthma visit treated with prednisone (n=96 visits among 74 children) associated with increased pollutant concentrations in the previous 7 days. We re-ran these analyses separately for children receiving medications through the school-based intervention and children in a usual care control group. RESULTS Interquartile range increases in ultrafine particles and carbon monoxide concentrations in the previous 7 days were associated with increases in the relative odds of a pediatric asthma visit, with the largest increases observed for 4-day mean ultrafine particles (interquartile range=2088p/cm(3); OR=1.27; 95% CI=0.90-1.79) and 7-day mean carbon monoxide (interquartile range=0.17ppm; OR=1.63; 95% CI=1.03-2.59). Relative odds estimates were larger among children receiving school-based inhaled corticosteroid treatment. We observed no such associations with accumulation mode particles, black carbon, fine particles (≤2.5μm), or sulfur dioxide. Ozone concentrations were inversely associated with the relative odds of a pediatric asthma visit. CONCLUSIONS These findings suggest a response to markers of traffic pollution among urban asthmatic children. Effects were strongest among children receiving preventive medications through school, suggesting that this group of children was particularly sensitive to environmental triggers. Medication adherence alone may be insufficient to protect the most vulnerable from environmental asthma triggers. However, further research is necessary to confirm this finding.