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

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.

2018 ◽  
Vol 123 (5) ◽  
pp. 387-398 ◽  
Author(s):  
Meghan E. O'Neill ◽  
Alexandra Ryan ◽  
Soyang Kwon ◽  
Helen J. Binns

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 &gt;85%, and anticipatory guidance regarding atlantoaxial instability and sexuality was &lt;35%. Overall adherence was higher when a subject was younger and when a provider was an attending-level pediatrician.


2019 ◽  
Vol 47 (8) ◽  
pp. 3757-3762
Author(s):  
Niculina Mang ◽  
Anda C. Vizitiu ◽  
Andrei Anghel

Objectives Down syndrome (DS) is associated with multiple complications, including a high risk of leukemia and thyroid dysfunction. This clinical study aimed to examine the complete blood cell count in patients with DS without leukemia or transient abnormal myelopoiesis. We also aimed to evaluate the effect of thyroid dysfunction on hematological anomalies in DS. Methods We analyzed the peripheral blood cell count in 23 pediatric patients with DS with and without thyroid dysfunction and in 17 pediatric patients without DS with thyroid dysfunction. Results Patients with DS showed greater neutrophilia and lymphopenia than did patients with DS and hypothyroidism and patients with hypothyroidism. Surprisingly, patients with DS showed a significant degree of eosinopenia in the peripheral blood. Interestingly, hypothyroidism had an attenuating effect on different lineages in the complete blood count. However, these anomalies were specific for DS. Conclusions Our clinical findings support previous data on DS-associated changes in the complete blood count. Our study also shows novel alterations in the complete blood count in leukemia-free patients with DS in association with hypothyroidism. The attenuating effect of thyroid dysfunction on changes in different lineages in the context of DS is novel and deserves further analysis in larger studies.


2017 ◽  
Vol 158 (2) ◽  
pp. 364-367 ◽  
Author(s):  
Norman R. Friedman ◽  
Amanda G. Ruiz ◽  
Dexiang Gao ◽  
David G. Ingram

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.


2020 ◽  
Vol 66 (4) ◽  
pp. 441-447
Author(s):  
Leilah Schoonraad ◽  
Amy Slogrove ◽  
Arnold Engelbrecht ◽  
Michael F Urban

Abstract Introduction 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. Methods 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. Results 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. Conclusion 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.


2017 ◽  
Vol 173 (4) ◽  
pp. 897-904 ◽  
Author(s):  
Francisco Javier Martínez-Macías ◽  
Lucina Bobadilla-Morales ◽  
Janet González-Cruz ◽  
Moisés Quiles-Corona ◽  
Alfredo Corona-Rivera ◽  
...  

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