Health Supervision for Children and Adolescents With Down Syndrome

Bull, Marilyn J.; Trotter, Tracy L.; Santoro, Stephanie L.; Christensen, Celanie K.; Grout, Randall W.

doi:10.1542/peds.2022-057010

Cited by 138 publications

(133 citation statements)

References 125 publications

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“…Our MGH DSP may not generalize to other Down syndrome clinics which follow different care models, and may need to be updated as the AAP statement is revised( 24 ). Studies to-date have also focused on single hospital systems or the use of Medicaid claims; in the future it would be useful to study adherence to the AAP statement for Down syndrome in other hospitals which have adopted the EHR-integrations( 25 ), or in a population-based cohort, such as a national ambulatory pediatric database.…”

Section: Discussionmentioning

confidence: 99%

Health Surveillance in a Down Syndrome Specialty Clinic: Implementation of Electronic Health Record Integrations During the Coronavirus Disease 2019 Pandemic

Santoro

Howe

Krell

et al. 2023

The Journal of Pediatrics

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Section: Discussionmentioning

confidence: 99%

Health Surveillance in a Down Syndrome Specialty Clinic: Implementation of Electronic Health Record Integrations During the Coronavirus Disease 2019 Pandemic

Santoro

Howe

Krell

et al. 2023

The Journal of Pediatrics

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“…Many congenital conditions can be present in children with DS. Although the phenotype of children with DS is variable, there are many typical features that enable physicians to make an accurate diagnosis [ 12 ]. For ethical and medical reasons, it is necessary to know about the possible diseases and problems that can occur in patients with Down syndrome from the first days of life.…”

Section: Discussionmentioning

confidence: 99%

Why Is Health Care for Children with Down Syndrome So Crucial from the First Days of Life? A Retrospective Cohort Study Emphasized Transient Abnormal Myelopoiesis (TAM) Syndrome at Three Centers

Telman

Sosnowska-Sienkiewicz

Strauss

et al. 2022

IJERPH

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Down syndrome (DS) is a common genetic disorder and is associated with an increased likelihood of many diseases, including defects of the heart, genitourinary system, gastrointestinal tract, and oncological diseases. The aim of this study was to analyze medical problems occurring in newborns with DS and to create a basic diagnostic and therapeutic algorithm intended primarily for neonatologists, pediatricians, family physicians, and physicians of other specialties caring for children with DS. Over a 5-year period, the medical records of 161 neonates with Down syndrome from four neonatology departments in Poznan, Poland, were examined. After applying exclusion criteria, 111 patients were analyzed. Data obtained from medical history included sex, week of gestation, birth weight, APGAR score, clinical symptoms, peripheral blood count with smear, and clinical features such as jaundice, hemorrhagic diathesis, ascites, hepato- or splenomegaly, pericardial or pleural effusion, respiratory failure, and other rare transient signs of abnormal myelopoiesis: fetal edema, hepatic fibrosis, renal failure, and rush. In the study group, 8% of children with Down syndrome were diagnosed with a heart and 1.8% with a genitourinary defect. Transient abnormal myelopoiesis syndrome (Transient abnormal myelopoiesis (TAM)) was found in 10% of newborns with DS. A blood count with blood smear, cardiology consultation with echocardiography, and an abdominal ultrasound should be performed in the first few days after birth in all newborns with Down syndrome. If this is not possible and the child’s condition is stable, these tests can be performed within 2–3 months after birth.

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“…People with DS are also at an increased risk of co-occurring neurodevelopmental and mental health conditions, and behavioural issues (Capone et al 2006; Bull and the Committee on Genetics 2011; van Gameren-Oosterom et al 2011;Straccia et al 2014;Bull 2020;Bull et al 2022).…”

Section: Introductionmentioning

confidence: 99%

“…2014; Bull 2020; Bull et al . 2022). Treatment of these conditions with certain medications, such as atypical antipsychotics, can contribute to weight gain as well (McQuire et al .…”

Section: Introductionmentioning

confidence: 99%

DSFit: a feasibility pilot study of a group exercise programme for adolescents with Down syndrome

Hojlo

Milliken

Baumer

et al. 2022

J intellect Disabil Res

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Background While past research has underscored the benefits of physical activity for people with Down syndrome (DS), exercise programming that is customised to and/or accessible for children and adolescents with DS is limited. The objectives of this pilot were to (1) develop and refine an engaging exercise programme for adolescents with DS, called DSFit; (2) assess feasibility over the course of two pilot iterations; and (3) examine participant and parent feedback regarding exercise priorities and the DSFit exercise programme. Method Participants were 12 unique adolescents (ages 11–17 years) with DS. Both pilot iterations of the programme consisted of weekly group exercise sessions and home exercises to complete between sessions. Physical fitness and mood/behaviour were assessed at baseline and at the end of the intervention. Parent and child goal‐setting and feedback surveys were collected before and immediately after the intervention, and a 2‐month follow‐up assessed physical activity and exercise attitudes. Quality improvement methodology and participant/parent feedback were used to modify the second iteration to better meet the needs of our study population. Changes included an expanded age range, modified physical assessments, decreased burden of questionnaires, and video‐recorded group sessions for at‐home practice. Results Physical fitness evaluation of core/trunk strength and stability, lower‐ and upper‐body strength, balance, flexibility, and walking was feasible, and the majority of participants in both pilot iterations improved in at least one category of physical assessment between baseline and end of intervention. Assessment of symptoms of anxiety, depression and behavioural concerns was also feasible and results showed slight improvements in some participants. Both parent and participant feedback indicated that participants enjoyed the programme and appreciated the opportunity to start developing sustainable exercise habits. Conclusions A group exercise programme with supported at‐home components is feasible for adolescents with DS. Future iterations will continue to examine programme efficacy with improved fitness testing and larger sample sizes. Strategies to increase at‐home compliance, such as virtual sessions and parent/guardian‐guided physical fitness assessments, will also be incorporated.

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Health Supervision for Children and Adolescents With Down Syndrome

Cited by 138 publications

References 125 publications

Health Surveillance in a Down Syndrome Specialty Clinic: Implementation of Electronic Health Record Integrations During the Coronavirus Disease 2019 Pandemic

Health Surveillance in a Down Syndrome Specialty Clinic: Implementation of Electronic Health Record Integrations During the Coronavirus Disease 2019 Pandemic

Why Is Health Care for Children with Down Syndrome So Crucial from the First Days of Life? A Retrospective Cohort Study Emphasized Transient Abnormal Myelopoiesis (TAM) Syndrome at Three Centers

DSFit: a feasibility pilot study of a group exercise programme for adolescents with Down syndrome

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