Survey of professionals' expectations of developmental task achievement of cystic fibrosis self-care in children

We surveyed 174 professionals with at least 6 months of experience working with children and adolescents with cystic fibrosis (CF), to obtain estimates of ages at which 50% of children with CF may be able to perform each of 44 self-care behaviors related to the treatment of CF. Respondents were 63 physicians, 36 nurses, 24 dietitians, 18 respiratory therapists, 17 nurse practitioners, 10 social workers, and 4 psychologists, who had a mean of 11.4 years (SD = 7.5) of experience working with pediatric patients with CF. Mean age estimates for self-care behaviors ranged from 5.5–13.9 years. For each item, responses varied among respondents, as reflected by a mean standard deviation of 2.75 years for all behaviors. Analyses of concordance suggested a high level of agreement among respondents for the order of mastery of specific skills related to diet and enzymes use only. To date, there are no empirically defined age estimates for when children with CF may be able to perform specific self-care behaviors involved in the management of CF. This survey is the first step in generating age estimates for self-care independence in CF. Future research should conduct an objective assessment of children's CF knowledge and skill in performing these behaviors, and compare these findings to the age estimates offered in this study. Pediatr Pulmonol. 2005; 40:135–140. © 2005 Wiley-Liss, Inc.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/48705/1/20262_ftp.pd

Detection of Maternal Alcohol Use Problems in the Pediatric Emergency Department

Maternal alcohol use problems may impact the health and well-being of children, but often remain unrecognized. Mothers of young children seldom seek outpatient care for themselves; thus, pediatric settings may present an opportunity for the detection of maternal alcohol use problems. This study examines the feasibility of screening for and prevalence of alcohol use problems in mothers of young children in the context of seeking pediatric emergency care. We also examined the relationship of maternal alcohol use problems with use of pediatric emergency care. Methods : A total of 361 English-speaking mothers of children aged 7 and younger completed screening measures during their child's emergency care visit. TWEAK was used to screen for alcohol use problems. The screening survey also included information on children's health status and health care use, demographics, and the Center for Epidemiological Studies Depression Scale. Results : Of the women approached, 90% agreed to complete the screening measure. On the basis of cutoff score of 2 or more, 7% of women had elevated TWEAK scores. Those women with a TWEAK score >2 reported greater use of the pediatric emergency department (PED) than women scoring below the cutoff. On the basis of multivariate analyses, significant predictors of recent PED use included the presence of child chronic illness, younger maternal age, and TWEAK score. Conclusions : Screening for alcohol use problems among mothers of young children using the TWEAK appears to be feasible in a busy PED setting. The PED setting is promising for identifying risk drinking among women who may be less likely to be otherwise detected and for whom alcohol use may be impacting child outcomes.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/66222/1/j.1530-0277.2006.00132.x.pd

Complementary and alternative medicine use in families of children with cerebral palsy

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/66295/1/j.1469-8749.2003.tb00414.x.pd

Access to specialty care in autism spectrum disorders-a pilot study of referral source

<p>Abstract</p> <p>Background</p> <p>In the United States, a medical home model has been shown to improve the outcomes for children with special health care needs. As part of this model, primary care physicians provide comprehensive medical care that includes identification of delayed and/or atypical development in children and coordination of care with specialists. However, it is not clear if families of children with Autism Spectrum Disorder (ASD) rely on the medical home model for care of their child to the same extent as families of children with other special health care needs. This study aims to add to the understanding of medical care for children with ASD by examining the referral source for specialty care.</p> <p>Methods</p> <p>This retrospective study was accomplished by evaluating parent completed intake data for children with ASD compared to those with other neurological disorders in a single physician Pediatric Neurology Practice at a major urban medical center in Northern New Jersey. To account for referral bias, a similar comparison study was conducted using a multispecialty ASD practice at the same medical center. Parent reported "source of referral" and "reason for the referral" of 189 ASD children and 108 non-ASD neurological disordered children were analyzed.</p> <p>Results</p> <p>The specialty evaluations of ASD were predominantly parent initiated. There were significantly less referrals received from primary care physicians for children with ASD compared to children with other neurodevelopmental disorders. Requirement of an insurance referral was not associated with a primary care physician prompted specialty visit.We identified different patterns of referral to our specialty clinics for children with ASD vs. children with other neurolodevelopmental disorders.</p> <p>Conclusion</p> <p>The majority of the families of children with ASD evaluated at our autism center did not indicate that a primary care physician initiated the specialty referral. This study suggests that families of children with ASD interface differently with the primary care provider than families of children with other neurological disorders.</p

The psychometric properties of the Ages & Stages Questionnaires for use as population outcome indicators at 2.5 years in England: A systematic review

Background: Early identification of children with potential development delay is essential to ensure access to care. The Ages & Stages Questionnaires (ASQ) are used as population outcome indicators in England as part of the 2.5 year review. Method: The aim of this article was to systematically review the worldwide evidence for the psychometric properties of the ASQ third edition (ASQ-3TM) and the Ages & Stages Questionnaires®: Social-Emotional (ASQ:SE). Eight electronic databases and grey literature were searched for original research studies available in English language, which reported reliability, validity, or responsiveness of the ASQ-3TM or ASQ:SE for children aged between 2 and 2.5 years. Twenty studies were included. Eligible studies used either the ASQ-3TM or the ASQ:SE and reported at least one measurement property of the ASQ-3TM and/or ASQ:SE. Data were extracted from all papers identified for final inclusion, drawing on Cochrane guidelines. Results: Using ‘positive’, ‘intermediate’, and ‘negative’ criteria for evaluating psychometric properties, results showed ‘positive’ reliability values in 11/18 instances reported, ‘positive’ sensitivity values in 13/18 instances reported, and ‘positive’ specificity values in 19/19 instances reported. Conclusions: Variations in age or language versions used, quality of psychometric properties, and quality of papers resulted in heterogeneous evidence. It is important to consider differences in cultural and contextual factors when measuring child development using these indicators. Further research is very likely to have an important impact on the interpretation of the ASQ-3TM and ASQ:SE psychometric evidence

In utero azathioprine exposure and increased utilization of special educational services in children born to mothers with systemic lupus erythematosus

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/94403/1/Marder_2012_In_utero_azathioprine_SLE.pdf165