Evaluation of Pediatrician Adherence to the American Academy of Pediatrics Health Supervision Guidelines for Down Syndrome

2018 ◽  
Vol 123 (5) ◽  
pp. 387-398 ◽  
Author(s):  
Meghan E. O'Neill ◽  
Alexandra Ryan ◽  
Soyang Kwon ◽  
Helen J. Binns
Keyword(s):  
Primary Care ◽  
Down Syndrome ◽  
American Academy ◽  
Medical Records ◽  
Atlantoaxial Instability ◽  
Anticipatory Guidance ◽  
Comorbid Conditions ◽  
Children With Down Syndrome ◽  
Health Supervision ◽  
American Academy Of Pediatrics

Abstract The American Academy of Pediatrics's guideline on health supervision for children with Down syndrome (DS) offers pediatricians guidance to improve detection of comorbid conditions. Pediatrician adherence has not yet been comprehensively evaluated. Medical records of 31 children with DS who received primary care at two urban academic clinic sites from 2008–2012 were reviewed. Data was extracted on adherence to age-specific individual guideline components for each subject by year-of-life (total 84 years-of-life). Overall adherence across all components was 83% (2001 guideline) and 67% (2011 guideline). Adherence to thyroid, hearing, vision, and developmental components was >85%, and anticipatory guidance regarding atlantoaxial instability and sexuality was <35%. Overall adherence was higher when a subject was younger and when a provider was an attending-level pediatrician.

Accuracy of Parental Perception of Nighttime Breathing in Children with Down Syndrome

2017 ◽  
Vol 158 (2) ◽  
pp. 364-367 ◽  
Author(s):  
Norman R. Friedman ◽  
Amanda G. Ruiz ◽  
Dexiang Gao ◽  
David G. Ingram
Keyword(s):  
Down Syndrome ◽  
American Academy ◽  
Tertiary Care ◽  
Case Series ◽  
Neck Surgery ◽  
Parental Perception ◽  
Breathing Patterns ◽  
Children With Down Syndrome ◽  
American Academy Of Pediatrics ◽  
Obstructive Sleep

Objective In 2011, the American Academy of Pediatrics published a guideline for children with Down syndrome (DS), recommending a polysomnogram (PSG) by age 4 years regardless of symptoms. Their rationale was based on 2 publications with small cohorts, where at least 50% of the children had no obstructive sleep apnea (OSA) symptoms but their PSG results were abnormal. The American Academy of Otolaryngology—Head and Neck Surgery Foundation published a clinical practice guideline recommending PSG prior to adenotonsillectomy for these children. This study aimed to assess parents’ accuracy of their children’s breathing patterns as compared with PSGs in a larger cohort of children with DS. Study Design Case series with chart review. Setting Tertiary care academic pediatric hospital. Subjects and Methods Sleep intake forms assessing frequency of parent-observed apnea, snoring, and restless sleep were analyzed. None of the children had a previous tonsillectomy. Two groups were analyzed according to symptoms: infrequent (<3 nights per week on all questions answered) and frequent (≥6 nights per week on at least 1 question). OSA severity was categorized as follows: normal, <2 events per hour; mild, 2 to 4.9; moderate, 5 to 9.9; and severe, ≥10. Results A total of 113 children met inclusion criteria: 34% (n = 38) had infrequent symptoms, and 66% (n = 75) had frequent symptoms. Parents were unable to predict the presence or absence of OSA by nighttime symptoms ( P = .60). The risk of OSA for children with frequent symptoms versus those with infrequent symptoms was 1.04 (95% CI, 0.89-1.3). Conclusion Parents of DS children are unable to predict the presence or absence of OSA by nighttime symptoms, nor are they able to determine its severity.

Disparities in Health Supervision for Children With Down Syndrome

2017 ◽  
Vol 56 (14) ◽  
pp. 1319-1327 ◽  
Author(s):  
Katie Williams ◽  
David Wargowski ◽  
Jens Eickhoff ◽  
Ellen Wald
Keyword(s):  
Down Syndrome ◽  
Health Care Services ◽  
Blood Count ◽  
Complete Blood Count ◽  
Eye Disease ◽  
Children With Down Syndrome ◽  
Care Services ◽  
Health Supervision ◽  
American Academy Of Pediatrics ◽  
Spine Radiographs

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.

Adherence to Guidelines for Screening Polysomnography in Children with Down Syndrome

2019 ◽  
Vol 161 (1) ◽  
pp. 157-163 ◽  
Author(s):  
Philip D. Knollman ◽  
Christine H. Heubi ◽  
Jareen Meinzen-Derr ◽  
David F. Smith ◽  
Sally R. Shott ◽  
...  
Keyword(s):  
Down Syndrome ◽  
American Academy ◽  
Universal Screening ◽  
Significant Shift ◽  
Adherence To Guidelines ◽  
Children With Down Syndrome ◽  
American Academy Of Pediatrics ◽  
Obstructive Sleep ◽  
Before And After ◽  
The Mean

Objectives To compare the percentage and mean age of children with Down syndrome (DS) who underwent polysomnography (PSG) to evaluate for obstructive sleep apnea (OSA) before and after the introduction of the American Academy of Pediatrics guidelines recommending universal screening by age 4 years. Study Design Retrospective cohort study. Setting Single tertiary pediatric hospital. Methods This study is a review of patients with DS seen in a subspecialty clinic. Children born preguidelines (2000-2006) were compared with children born postguidelines (2007-2012) regarding percentage receiving PSG, age at first PSG, and rate of OSA. Results We included 766 children with DS; 306 (40%) were born preguidelines. Overall, 61% (n = 467) underwent PSG, with a mean ± SD age of 4.2 ± 2.9 years at first PSG; 341 (44.5%) underwent first PSG by age 4 years. The rate of OSA (obstructive index ≥1 event/hour) among children undergoing first PSG was 78.2%. No difference was seen in the percentage receiving PSG preguidelines (63.4%) versus postguidelines (59.4%, P = .26). The mean age at the time of first PSG was 5.3 ± 3.5 years preguidelines versus 3.4 ± 2.0 years postguidelines ( P < .0001). Children in the postguidelines cohort were more likely to undergo first PSG during the ages of 1 through 4 years (67.4% vs 52.1%, P < .0001). There was no difference in rates of OSA between the pre- and postguidelines cohorts (79.8% vs 75.9%, P = .32). Conclusions Nearly two-thirds of children with DS (61%) underwent PSG overall, with a significant shift toward completion of PSG at an earlier age after the introduction of the American Academy of Pediatrics guidelines for universal screening for OSA.

568 Sleep Evaluation in Down Syndrome: What is the Adherence to American Academy of Pediatrics DS Guidelines?

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A224-A224
Author(s):  
Anne Marie Morse
Keyword(s):  
Obstructive Sleep Apnea ◽  
Down Syndrome ◽  
Sleep Apnea ◽  
American Academy ◽  
Phenotypic Variability ◽  
Sleep Diary ◽  
Poor Correlation ◽  
Sleep Habits ◽  
American Academy Of Pediatrics ◽  
Obstructive Sleep

Abstract Introduction Specialized health care guidelines for children with Down Syndrome (DS) published by the American Academy of Pediatrics (AAP) provided specific recommendations based on the higher risk needs of individuals with DS. Obstructive sleep apnea (OSA) is reported to be present in 50–79% of individuals with DS. According to the AAP guideline, all individuals with DS should have a polysomnography (PSG) evaluating for OSA by 4 years old and then screened by history and physical exam annually thereafter. An interim analysis of an ongoing Down Syndrome Research study was evaluated to determine rate of adherence to these guidelines. Methods The Dimensional, Sleep, and Genomic Analyses of Down Syndrome to Elucidate Phenotypic Variability study enrolled down syndrome patients 30 months and older, as well as first degree relatives to participate. Patients completed a standardized clinical sleep interview, childhood sleep habits questionnaire and was asked to complete 2 week sleep diary, actigraphy and polysomnography. We aimed to characterize the rate of PSG completion by 4 years of age, number of research PSGs completed and rate of OSA identified on research PSG. Results A total of 31 patients were consented. The median patient age was 10 years old with a slight female predominance (15F:12M). 27 patients completed the sleep interview and 19 successfully completed a scorable polysomnography. Only 7 patients had completed a PSG previously by age of 4 years. 11 of 19 studies demonstrated obstructive sleep apnea ranging from mild to severe severity (1.7–42.5/hr). REM AHI (range 1.2–58.2/hr, mean 19/hr and median 12.3/hr) demonstrated increased severity. Conclusion Despite AAP guidelines recommending universal PSG evaluation by the age of 4 years of age, only 26% of patients interviewed has a PSG successfully completed previously. Additional recommendations by AAP include yearly surveillance of symptoms although there is poor correlation between parent report and polysomnogram results. Of the 19 research completed PSGs, 58% demonstrated OSA with the mean and median results consistent with moderate to severe OSA and worsening during REM sleep. Improved effort to successfully obtain PSG in this population is needed. Further study is ongoing to evaluate the relationship to other health and cognitive outcomes. Support (if any) NIMH

Screening for Developmental Disabilities: A Suggestion!

PEDIATRICS ◽  
1995 ◽  
Vol 95 (1) ◽  
pp. 159-159
Author(s):  
Robert H. Chesky
Keyword(s):  
Early Intervention ◽  
American Academy ◽  
Position Statement ◽  
Developmental Screening ◽  
Publicly Funded ◽  
Special Education Services ◽  
Education Services ◽  
Health Supervision ◽  
American Academy Of Pediatrics ◽  
Recent Position

As a private practitioner with some interest in periodic, standardized preschool developmental screening, I appreciated the recent position statement on this subject (Pediatrics, May 1994) by the Committee on Children with Disabilities. At least in my locale, it doesn't seem to me that we practicing pediatricians (myself included) have exactly covered ourselves with glory with respect to this important area of health supervision. Thus, perhaps pediatricians may benefit from "regular," "periodic," "formal" American Academy of Pediatrics reminders that inaccurate developmental assessments may deny preschool children needed (and now often publicly funded) early intervention and special education services.

scholarly journals Parents’ Assessment of Disability in Their Children With Down Syndrome

2020 ◽  
Vol 7 ◽  
pp. 2329048X2093424
Author(s):  
Guðrun Jákupsdóttir Egholm ◽  
Margrethe Bjerknes ◽  
Niels Ove Illum
Keyword(s):  
Down Syndrome ◽  
Clinical Data ◽  
Medical Records ◽  
Rasch Analysis ◽  
Total Population ◽  
International Classification ◽  
International Classification Of Functioning ◽  
Disability And Health ◽  
Children With Down Syndrome

Aim: To describe a population of children with Down syndrome and evaluate their parents’ assessment of disability. Methods: Medical records of a population of 80 children with Down syndrome aged 5 to 17 years were analyzed for genetic background and associated diagnoses. And 27 parents to their children agreed to assess disability by employing a set of 26 International Classification of Functioning, Disability and Health body function (b) codes and activity and participation (d) codes. Clinical data were gathered and analysis of parents’ assessment of disability using psychometric and Rasch analysis was performed. Results: Clinical data on 27 children assessed by their parents and 53 children not assessed had identical associated diagnoses. The 26 International Classification of Functioning, Disability and Health codes and qualifiers had a mean score of 2.67 (range 1.26-4.11) and corrected code-total correlations mean of 0.55 (range −1.17 to 0.82). Rasch analysis showed proper code MNSQ infit and outfit values with mean 1.03 and 1.06. Conclusion: Clinical data on 27 children assessed were similar to 53 children that were not evaluated. Parents’ assessment of the 27 children showed good psychometric and Rasch analysis properties. Similar results might be expected in the total population of 80 children.

Health Supervision Visits: Should the Immunization Schedule Drive the System?

PEDIATRICS ◽  
1987 ◽  
Vol 79 (4) ◽  
pp. 581-582
Author(s):  
ROBERT J. HAGGERTY
Keyword(s):  
American Academy ◽  
Disease Control ◽  
Immunization Schedule ◽  
Health Supervision ◽  
American Academy Of Pediatrics ◽  
Centers For Disease Control ◽  
Well Child Visit ◽  
Child Visit

The Centers for Disease Control (CDC) recently recommended that the vaccines usually given at the 15- and 18-month visits could be given simultaneously at 15 months, thereby omitting the 18-month well-child visit. There is little doubt that measles-mumps-rubella (MMR) immunization, now recommended by the American Academy of Pediatrics to be given at 15 months of age, and the diphtheria-tetanus-pertussis (DTP) and oral polio booster immunizations, now recommended to be given at 18 months of age, could be given together with no problem at 15 months. But this is not a good enough reason to abandon the 18-month well-child visit. Although I will not argue that we have solid evidence for the effectiveness of any well-child procedures other than immunizations, I believe that the 18-month visit is one of the more important ones and should not be discontinued for all children.

Sign in / Sign up

Export Citation Format

Share Document