Health Supervision Guidelines Research Articles

Developmental Milestones: Ages 2 Months to 5 Years

Although no 2 children develop at the same rate, they should be able to do certain things at certain ages. Learning to sit up, walk, and talk are some of the major developmental milestones your child will achieve.Here is information about how babies and young children typically develop. Examples of developmental milestones for ages 1 month to 6 years are listed.NOTE: If you see large differences between your child’s age and the milestones listed, talk with your child’s doctor.Remember to take your child to his recommended well-child (health supervision) visits. At each visit, your child’s doctor will check his progress and ask you about the ways you see your child growing.The American Academy of Pediatrics recommends regular well-child visits at the following times: Your pediatrician may recommend additional visits. If you have any questions or concerns about your child, talk with your child’s doctor. If there is a concern, early treatment is important.The information contained in this publication should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances. Information applies to all sexes and genders; however, for easier reading pronouns such as he are used throughout this publication. Developmental milestones are adapted from Hagan JF Jr, Shaw JS, Duncan PM, eds. Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents [pocket guide]. 4th ed. Elk Grove Village, IL: American Academy of Pediatrics; 2017.

Genital Examination of the Prepubertal Female: Essentials for Pediatric Nurse Practitioners.

Genital Examination of the Prepubertal Female: Essentials for Pediatric Nurse Practitioners.

Scope of Health Care Benefits for Neonates, Infants, Children, Adolescents, and Young Adults Through Age 26.

Timely access to appropriate health care from the prenatal period onward is one of several pillars essential to optimize the health of a child preparing to become an adult. In 1967, Congress passed legislation that specified an Early and Periodic Screening, Diagnostic and Treatment standard as the mandatory child health component of Medicaid. Subsequent legislative amendments have generally strengthened this standard. In particular, state Medicaid programs must provide any health care service for children that is covered by the federal Medicaid program even if the state does not cover that service for adults. An initial set of detailed recommendations concerning the best preventive care services for children, adolescents, and young adults was published in 1994 based on deliberations of a large group of expert pediatric health care providers and family representatives. The most recent updated recommendations are available in the 2017 fourth edition of Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents. The Patient Protection and Affordable Care Act of 2010 (Pub L No. 114-148) referenced Bright Futures recommendations as a standard for access to and design of age-appropriate health insurance benefits for neonates, infants, children, adolescents, and young adults. This policy statement summarizes recent developments pertaining to the scope of health care benefits offered for children by public and private payers. The statement identifies barriers that impede achievement of a uniform standard that all payers can adopt. Finally, the statement refreshes a recommended set of health insurance benefits for neonates, infants, children, adolescents, and young adults through age 26.

Cross-Sector Approach Expands Screening and Addresses Health-Related Social Needs in Primary Care.

During infancy, the American Academy of Pediatrics Bright Futures fourth edition health supervision guidelines recommend frequent well-child visits (WCVs) in which providers are expected to screen for and address maternal depression, intimate partner violence (IPV), and health-related social needs (HRSN). We spread an evidence-based approach that implements these recommendations (Developmental Understanding and Legal Collaboration for Everyone; DULCE) with 3 aims for 6-month-old infants and their families: 75% receive all WCVs on time, 95% are screened for 7 HRSNs, and 90% of families with concrete supports needs and 75% of families with maternal depression or IPV receive support. Between January 2017 and July 2018, five DULCE teams (including a community health worker, early childhood system representative, legal partner, clinic administrator, pediatric and behavioral health clinicians) from 3 communities in 2 states participated in a learning collaborative. Teams adapted DULCE using Plan-Do-Study-Act cycles, reported data, and shared learning monthly. Run charts were used to study measures. The main outcome was the percent of infants that received all WCVs on time. The percentage of families who completed all WCVs on time increased from 46% to 65%. More than 95% of families were screened for HRSNs, 70% had ≥1 positive screen, and 86% and 71% of those received resource information for concrete supports and maternal depression and IPV, respectively. Quality improvement-supported DULCE expansion increased by 50% the proportion of infants receiving all WCVs on time and reliably identified and addressed families' HRSNs, via integration of existing resources.

Analysis of the Diet Quality and Nutritional State of Children, Youth and Young Adults with an Intellectual Disability: A Multiple Case Study. Preliminary Polish Results.

(1) Background: Considering the limited amount of available data on the diet quality of children, adolescents, and young adults with an intellectual disability (ID) in Poland, as well as the higher incidence of nutritional disorders among people with ID in comparison to the general population, a study was conducted to assess the quality of diet in community-dwelling young individuals with ID. (2) Methods: A multiple-case study was carried out to obtain data on anthropometric parameters and food records over a three-day observation period for 18 subjects with ID. The nutritional value of the products and dishes consumed by the subjects was calculated using the commercial computer program Kcalmar.pro (Hermax, Poland), which contains the Polish database of the nutritional value of food products and dishes. The results presented here are those of a pilot study of a wider research project. (3) Results: The study group consisted of seven women (38.9%) and 11 men (61.1%) with an average age of 12.94 years (range 4.00–22.00) and an average BMI of 25.2 (range 14.5–35.4). The obtained results confirmed the suboptimal pattern of nutrition in children and adolescents with ID. Regarding energy intake and dietary macronutrients, only in 27.8% of cases, energy intake exceeded the Estimated Energy Requirement corresponding to age, sex, body weight, and height. Most of the respondents were characterized by correct intake of proteins, fats, and carbohydrates, and 83.3% showed excessive intake of saturated fatty acids. Excessive intake of vitamins B1, B2, and B6 was observed in all subjects, and that of vitamins B3 (niacin), B12, A, and C in the vast majority of subjects, while deficiency of vitamin D was observed in all individuals and folic acid in 22.2% of individuals. Excessive intake of minerals, such as sodium, phosphorus, and magnesium was noted among most of the respondents, while the intake of calcium and iodine was found to be insufficient. Compared to people with less severe ID (grades 1 and 2), people with grade 3 ID showed significantly lower intake/reference fulfillment of dietary components such as vitamin B6, potassium, phosphorus, iron, copper, iodine, magnesium, and zinc. No significant differences were noted in the nutritional reference fulfillment for various nutrients among the groups distinguished by sex, nutritional status, or the cause of ID. (4) Conclusion: Health supervision guidelines proposed for persons with ID should take into account the dietary practices of the families caring for them, with an emphasis on the prevention and correction of irregularities that may reduce the effectiveness of rehabilitation and deteriorate the health of the affected people. Caregivers/parents of each person with ID who took part in the study were given individualized dietary advice aimed at correcting the dietary abnormalities.

A Randomized Control Trial of Using Baby Books to Reduce New Mothers' Feelings of Stress and Depression.

To determine whether embedding educational information about child development and optimal parenting practices from the Bright Futures Guidelines for Health Supervision into baby books can reduce women's depressive symptoms and parenting stress during the first 18months of motherhood. A sample of 167 low-income, primarily African-American, first-time mothers were randomized into three conditions while pregnant: an educational book group, a non-educational book group, or a no-book group. Depressive symptoms and parenting stress were assessed using two questionnaires during home visits when women were in their third trimester of pregnancy (baseline) and when their child was 2, 4, 6, 9, 12, and 18months of age. Hierarchical Linear Models showed that women who received books with educational information shed depressive symptoms and parenting stress at a faster rate than women who received similar books without educational information and women who did not receive books. These findings indicate that providing women with child development and parenting information via baby books can be an effective strategy for promoting new mothers' emotional wellbeing. Since feelings of sadness and stress are risky for both mothers and their infants, this easy to implement intervention holds great promise.

Natural history study of adults with Wolf-Hirschhorn syndrome 2: Patient-reported outcomes study.

Wolf-Hirschhorn syndrome (WHS) is a contiguous gene disorder consisting of prenatal and postnatal growth deficiency, distinctive craniofacial features, intellectual disability, and seizures. The condition is caused by a partial loss of material from the distal portion of the short arm of chromosome 4 (4p16.3). While there are many reports of individuals with WHS, useful data on long-term survival and life status of adults with the syndrome are very limited. There are only 11 reports of individuals over the age of 18 years in the literature. Establishing the medical manifestations of adults with WHS would be helpful in establishing appropriate health supervision guidelines. This study was one component of a two-part investigation on adults with WHS. This patient-reported outcomes study (PROS) was accomplished by using the registry of rare diseases at Sanford Research, Coordination of Rare Diseases (CoRDS)at Sanford. Thirty family members or caretakers of 30 adults with WHS/4p- entered into the CoRDS registry and completed some or all of the survey data. Twelve caretakers completed the recently-added survey on activities of daily living. Two of the individuals with WHS were partly independent while 10 required total care. The results provide novel information on daily life and independence in adults with WHS. Importantly, the majority of caretakers reported that the adults were in good health. The data from both parts of the study will contribute to our knowledge of the natural history of the syndrome and guide in establishing appropriate health supervision guidelines for adults with WHS.

Men's Knowledge of Anticipatory Guidance Topics: Results From a Nationally Representative Survey

1) To describe young men's knowledge of infant routines, discipline, development, safety, sleep, and nutrition, using items assessing the American Academy of Pediatrics Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents. 2) To report differences in knowledge between fathers and non-fathers. 3) To examine factors associated with men's greater knowledge. Participants were men (N=1303) aged 18 to 35 years responding to a cross-sectional survey that was administered to a national panel established through probability sampling of the civilian, non-institutionalized US population. Survey weights allow reporting of nationally representative analyses. Participants (mean age=27; 58% white, 36% fathers) correctly answered 52% of the infant knowledge questions. Fathers and non-fathers answered 64% and 46% of the items correctly, respectively. The difference in knowledge between fathers and non-fathers was statistically significant (B=0.16, P< .001). The subscale with the highest number of correct responses was routines (80% accuracy), followed by discipline (59% accuracy), safety (52% accuracy), sleep (51% accuracy), development (50% accuracy), and nutrition (40% accuracy). Multivariate analyses showed that depressive symptoms (B=-0.07, P < .05) were associated with lower infant knowledge, while higher education (B=0.06, P < .05) and current employment (B=0.06, P < .01) were associated with higher infant knowledge. Significant gaps exist in men's knowledge of infant development. Pediatric health care providers can address gaps in parenting knowledge by providing anticipatory guidance to fathers.

Predictive value of the Ages and Stages Questionnaire® for school performance and school intervention in late preterm- and term-born children.

The new health supervision guidelines emphasize the importance of surveillance or a formal developmental screening test at 4 years, one of the most used tests is Ages & Stages Questionnaire. Nevertheless, there is still not enough evidence whether these tools will be useful to predict future school performance (SP). The objectives of this study were to evaluate the Ages & Stages Questionnaire 3rd edition 48-month interval (ASQ3-48) translated to Spanish for predicting the need for school intervention (SI) and poor SP at 8-9 years of age, in late preterm infants (LPIs) and term-born infants (Terms) and to compare the prevalence of SI and poor SP in the two groups. Data were collected from a cohort of 75 LPIs and 58 Terms assessed with ASQ3-48 and with a further assessment of academic results at 8-9 years, through a standardized school test of the Education Department of Catalonia. SI data were obtained through a parent report. Area under the curve (AUC), sensitivity, specificity and predictive values were calculated, and logistic regression analysis was used. The prevalence of poor SP was 12.8%, without statistically significant differences between LPIs and Terms. LPIs had higher SI than Terms (29.3% vs. 10.3%, P = 0.001). AUC for poor SP was 0.73 and for receiving SI was 0.56 without differences between the two groups. The sensitivity of the ASQ3-48 for poor SP was 41%, for specificity 92%, and for receiving SI 14% and 89%, respectively. Poor SP was related to having positive screening in the ASQ3-48 (OR 6.5 [95% CI, 1.9-22.2]) while having received SI was related to late prematurity (OR 3.6 [95% CI, 1.3-9.6]). The ASQ3-48 shows acceptable predictive properties for poor SP but not for receiving SI. No differences were found in SP between LPI and Term cohorts, but LPIs are likelier to require SI.

14. DESIGN AND EVALUATION OF A PEDIATRIC RESIDENT COMPLEX CARE CURRICULUM

Background Despite early career physicians’ competence in caring for children with medical complexity (CMC) when acutely ill, residents often do not receive adequate training to care for CMC in the primary care setting. A recent national Delphi study identified 11 curricular gaps in the care of CMC. This study evaluates the design of a curriculum that addresses majority of these gaps. Methods Pediatric residents first watch an orientation video to learn the rotation expectations and complete an anonymous pre-rotation assessment and 4 pre-tests, one for each week's themes. Each week learners receive didactic lectures, conduct ∼ 15 patient visits per week, engage in community-based site visits, and complete writing assignments demonstrating grasp of health literacy and/or evidence-based practice guidelines. Residents complete the rotation with 4 post-tests, a post-hospital rotation assessment, and a reflection. Results The curriculum, guided by Kolb's experiential cycle, was delivered to 28 postgraduate trainees over 3 ½ years of pilot and implementation phases. Complete data were collected for 14 residents/fellows between June 2018 and November 2019. Test scores and trainee self-assessments reveal significant improvement in knowledge (26.3% vs. 99.4%), skills (41.7% vs. 100%), and self-reported behaviors (16.3% vs. 56.6%). Trainees produced 21 reflections describing changes in attitudes, 19 published blogs and 12 health care transition condition fact sheets, 8 health supervision guidelines EHR templates, and 4 portable medical summaries. Reflection statements identified 4 themes demonstrating what residents valued most from the curriculum: 1) coordination of care across disciplines including community-based resources; 2) communication with patients/families that elicits goals and fosters shared decision-making; 3) an empathic and people first approach to care; and 4) advocacy and addressing the social determinants of health. Conclusion A pediatric resident complex care curriculum addressing majority of nationally recommended topics improves trainees’ knowledge, skills, attitudes, and self-reported behaviors.

Proteinuria in Children.

Although the American Academy of Pediatrics (AAP) removed the screening urinalysis from its health supervision guidelines in 2007, the use of the urinalysis remains an important part of pediatric care. Thus, the incidental finding of proteinuria is still commonplace when a urine sample is collected for various complaints, such as fever and abdominal pain. Knowing when to reassure a patient with proteinuria versus when to perform additional testing is a situation that general practitioners face regularly, but also one that not all may be comfortable dealing with due to the possibility of missing a diagnosis. In addition, proteinuria in certain conditions can signify renal disease and worse outcomes, so general practitioners should know how to screen and interpret the results. Understanding the common benign and pathological causes of proteinuria helps medical providers to better inform and treat their patients, and possibly avoid unnecessary additional testing or subspecialty referrals. [Pediatr Ann. 2020;49(6):e268-e272.].

Losing Ground: Current Medicaid Policy Threatens Children's Access to Health Care

From 2008 through 2016, the number of uninsured children in the United States decreased from 7.6 million to 3.6 million ( Alker and Roygardner, 2019 Alker J. Roygardner L. The number of uninsured children is on the rise. 2019 Google Scholar ). However, since 2017 that trend has reversed. Over 4 million children are now uninsured—the highest rate of uninsured children since the implementation of the Affordable Care Act (ACA)—and over one-quarter of these children are aged under 6 years ( Burak et al., 2019 Burak E.W. Clark M. Roygardner L. Nation's youngest children lose health coverage at an alarming rate. 2019 Google Scholar ). According to the periodicity schedule for preventive pediatric health care, children should have 30 well-child visits from birth through 21 years of age, with 15 of these visits occurring from the first weeks of life through 6 years of age ( Hagan et al., 2017 Hagan J.F. Shaw J.S. Duncan P.M. Bright futures: Guidelines for health supervision of infants, children and adolescents. fourth ed. American Academy of Pediatrics, Elk Grove Village, IL2017 Google Scholar ). These visits provide preventive care, including developmental assessment, screening, and immunizations, offer anticipatory guidance to parents, and promote trusting relationships with health care providers. When children lack health insurance coverage, they often go without preventive services and experience suboptimal health outcomes ( Flores et al., 2017 Flores G. Lin H. Walker C. Lee M. Currie J.M. Allgeyer R. Massey K. The health and healthcare impact of providing insurance coverage to uninsured children: A prospective observational study. BMC Public Health. 2017; 17: 553 Crossref PubMed Scopus (10) Google Scholar ). Eileen K. Fry-Bowers, Associate Professor, University of San Diego, Hahn School of Nursing and Health Science, San Diego

Who should care for children with Down syndrome?

Children with Down syndrome are known to have intellectual disability and a wide variety of malformations, such as congenital heart defects, small ears, small mouths, and other physical findings, along with medical conditions such as hypothyroidism, hip dislocation, hearing loss, cataracts, atlantoaxial instability, and leukemia. In 2011, the American Academy of Pediatrics (AAP) updated its guidelines for health supervision of the child with Down syndrome to assist the pediatrician to care for the child with Down syndrome (https://pediatrics.aappublications.org/content/128/2/393). These guidelines seem straightforward, but they do not take into account the practicality of delivering that care. Two studies in this volume of The Journal should make us pause and re-consider who should care for children with Down syndrome, and how that care should be delivered. Joslyn et al used application programming interfaces in a population-based US sample of individuals with Down syndrome to determine the distances between an individual and a set of comprehensive Down syndrome specialty care clinics. One in 5 individuals was found to have significant geographic obstacles to receiving this specialty care. In another retrospective, population-based Hong Kong cohort of live births with Down syndrome from 1995 to 2014, Chua et al found that 1- and 5-year survival in Down syndrome were 94.4% and 92.6%, respectively, now similar to that which is seen in Western countries; the mortality rate in Hong Kong decreased significantly in the early 2000s. Meanwhile the live birth rate of children with Down syndrome declined steeply in Hong Kong over the past decades, from 11.8 per 10 000 live births in 1995 to 3.4 per 10 000 in 2014. With declining birth rates, yet a higher prevalence of childhood and adult survivors with Down syndrome, what is the optimal model to deliver care for the individual with Down syndrome? The inaccessibility to comprehensive clinics for American families is likely a larger problem worldwide. However, primary care providers are not positioned either to deliver optimal care to individuals with Down syndrome. A 2016 study showed that pediatricians adhere poorly to AAP guidelines for health supervision in Down syndrome, though compliance could be improved by an educational intervention (J Pediatr 2016;171:262-8.e1-2). Clearly, there is a need to improve the overall delivery of health care for individuals with Down syndrome. Some potential solutions might include telehealth, implementation of pathways in electronic medical records to track the required comprehensive care, and novel partnerships of specialists and primary care providers in both pediatric and adult medicine to deliver complex care. Although Down syndrome is indeed an incredibly complex, multi-system condition, affected individuals, their families, and primary care physicians and specialists in both pediatric and adult medicine have an opportunity to partner to provide a uniquely new model for complex care delivery in the 21st century. Article page 138 and 146▸

Screening for Anemia in Children with Down Syndrome.

As part of the 2011 American Academy of Pediatrics (AAP) health supervision guidelines for children with Down syndrome (DS), annual screening for iron deficiency anemia is recommended between the ages of 1 and 18 years, but the evidence supporting this recommendation is limited. This study aimed to assess the prevalence of anemia in patients with DS between the ages of 1 and 18 years to provide additional evidence for the AAP 2011 guideline recommendations for annual hemoglobin and ferritin screening in patients with DS. A retrospective cohort study was completed by obtaining data from the electronic health record (EHR) for patients meeting the following inclusion criterion: a diagnosis of DS in patients aged 1 to 18 years seen at our institution with hemoglobin drawn between July 2012 and 2016. Data were analyzed by the Fisher exact test and χ test. A total of 200 patients were identified. 22.5% had anemia, defined as a hemoglobin concentration less than 2 SDs for normed age. The National Health and Nutrition Examination Survey (2007-2010) reported prevalence of anemia for children aged 1 to 5 years is 3.2% when compared with 18.7% in our sample. Of the 45 children with anemia, 5% had a microcytic, 67.5% a normocytic, and 27.5% a macrocytic anemia. Only 10 received a diagnosis of anemia in the EHR. The prevalence of anemia in this cohort of children with DS is significantly higher than that in the general population, supporting the AAP guidelines for an annual screening until the age of 18 years.

A 5-Year Retrospective Review of the Health Supervision Received by Children with Down Syndrome at a South African Regional Hospital.

In 2011, the American Academy of Paediatrics (AAP) published revised health supervision guidelines for children with Down syndrome (DS). In the absence of South African guidelines, we described the health supervision received by children with DS at a rural regional hospital in the Western Cape, South Africa compared with the AAP guidelines. This was a 5-year retrospective description of the implementation of the 2011 AAP guidelines at the DS clinic at Worcester Provincial Hospital (WPH), specifically related to screening for and management of cardiac, thyroid, hearing and haematological disorders. Sixty-two children received care at WPH DS clinic during the study period. Thirty-six (58%) children lived in Worcester while 26 (42%) children were referred from peripheral hospitals. The median age at first clinic visit was 0.5 years [inter-quartile range (IQR) 0.2-1.2], a total of 177 person-years of follow-up with a median duration of 1.8 years (IQR 0.3-4.8). Two deaths occurred during the study period. Forty-nine (79%) children had a screening echocardiogram performed, the median age at first echocardiogram was 0.8 years (IQR 0.2-1.4). Five (14%) children from WPH compared with no children from the peripheral hospitals received the echocardiogram within the first month of life in keeping with AAP guidance (p = 0.06). Those requiring cardiac surgery were operated on at a median age of 2 years (IQR 0.9-2.3). Compared with the AAP guidelines, within the first month of life 17 (27%) children had a thyroid screen, 20 (32%) children had a full blood count and 7 (11%) children had a hearing assessment. AAP guidelines for health supervision in DS are challenging to achieve within our local health system. The development and advocacy for a South African DS health supervision guideline that can be applied not only in specialist clinics might improve the care of children with DS.

193. The Impact of Adolescents’ BMI Categories on Providers’ Behavioral Risk Screening

Screening and counseling for risk behaviors during well visits enables adolescents to create positive, lifelong health habits. Adolescents who are overweight or have obesity may experience implicit bias based on weight that might impact health care providers’ screening and counseling practices. Few studies have investigated whether adolescents who are overweight or have obesity receive clinical preventive services beyond nutrition/activity, as recommended by the Bright Futures: Guidelines for Health Supervision of Adolescents. This study’s objective was to examine differences in screening and counseling for modifiable risk behaviors during well visits based on adolescents’ BMI categories.

Health Surveillance along with Application of Age-based Scheduled Training Program for Down syndrome

Rehabilitation of the family of DS child to provide long-standing follow-up and support as well as the early detection of different health problems. A prospective observational study was accomplished on 65 children with DS selected randomly from the outpatient clinic of pediatric genetics. Application of Health Supervision Guidelines for Individuals with DS for specialized management and monitoring based on different of age groups. Also, the parents of DS children underwent scheduled training plan for solving their children difficulties as hypotonia and associated problem as feeding problem, cervical spine problem and hip dislocation by doing prefeeding exercises and some home physiotherapy in weekly visits. Then these children were evaluated at the end of every four months to assess outcome and retraining of the caregivers as needed. The prevalence of the most associated health problem with DS was the speech difficulty followed by iron deficiency anemia, medically treated ear problems , physical disability , urinary and bowel incontinence ,feeding problems, hypothyroidism and bilateral SNHL (72%, 64.6% , 35%, 33%, 29.2%, 24.6%, 16.9%, 10.7% respectively). After application of our scheduled training program, 84% of trained parents carried out prefeeding exercises, 86% of children showed adequate positioning during feeding as well as improved child cooperation during feeding. Furthermore, 84% got balanced nutritious diet. 68% of children developed urinary control by daytime whereas 60% developed urinary control by day and night. 81% showed improvement in bowel control by decreased frequency of encopresis. An effective early intervention, positive home environment and continuous supportive training of mothers of children with DS are helpful in improving the overall functioning and productivity of these children.

The Prenatal Visit

A pediatric prenatal visit during the third trimester is recommended for all expectant families as an important first step in establishing a child's medical home, as recommended by Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, Fourth Edition As advocates for children and their families, pediatricians can support and guide expectant parents in the prenatal period. Prenatal visits allow general pediatricians to establish a supportive and trusting relationship with both parents, gather basic information from expectant parents, offer information and advice regarding the infant, and may identify psychosocial risks early and high-risk conditions that may require special care. There are several possible formats for this first visit. The one used depends on the experience and preference of the parents, the style of the pediatrician's practice, and pragmatic issues of payment.

Disparities in Health Supervision for Children With Down Syndrome.

Increasing evidence suggests children with Down syndrome do not receive recommended health care services. We retrospectively assessed adherence to the 2001 American Academy of Pediatrics health supervision guidelines for 124 children with Down syndrome. Cervical spine radiographs were completed for 94% of children, often preoperatively. Adherence to complete blood count recommendations was 55% (95% CI 44% to 66%); lower for males ( P = .01) and children with private medical insurance ( P = .04). Adherence to thyroid function recommendations was 61% (95% CI 54% to 67%); higher for children seen by a pediatrician ( P = .002) and with known thyroid disease ( P < .0001). Adherence to audiology and ophthalmology recommendations was 33% (95% CI 27% to 40%) and 43% (95% CI 37% to 50%), respectively. Adherence rates were higher for children referred to an otolaryngologist ( P = .0002) and with known eye disease ( P < .0001). Future efforts should identify barriers to care and improve adherence to recommended screening.

Pediatrician Use of Down Syndrome Health Supervision Guidelines

Objective: The primary care of children with Down syndrome (DS) requires close attention to specific medical vulnerabilities to maximize quality of life and prevent secondary disability. To help optimize adulthood outcomes for children with DS, the AAP Council on Genetics published health supervision guidelines to promote standardized care that adheres to the latest evidence based information. Our primary objective was to determine primary care pediatrician comfort, familiarity and frequency of referral to the 2011 AAP health supervision guidelines for children with DS. A secondary objective was to identify interventions that would improve compliance. Methods: A voluntary, self-administered e-mail survey was distributed to Washington State AAP members using Survey Monkey. The questionnaire targeted information regarding demographics, guideline knowledge, perceived barriers to guideline utilization and interventions to improve use. General pediatricians living in Washington State with self-reported past, current or expected future experience with the pediatric DS population were included. Results: Our response rate was 17% (N=161). Approximately 80% of pediatricians reported being comfortable using guidelines. About 20% of pediatricians were unfamiliar with the guidelines and do not refer to them. An additional 20% refer to the guidelines only sometimes. When asked a specific question regarding a guideline recommendation, 72% answered incorrectly. Over three-quarters of participants reported that electronic health record reminders would be the most beneficial. Conclusions: Opportunities to improve general pediatrician awareness and utilization of the DS guidelines exist. The most beneficial perceived intervention among pediatricians is guideline integration into the electronic health record. Studies measuring compliance and awareness of guidelines with a variety of interventions will be necessary in the future.