Correlation between cognitive function, gross motor skills and health – Related quality of life in children with Down syndrome

El-Hady, Saly Said Abd; El-Azim, Faten Hassan Abd; Eltalawy, Hoda A.

doi:10.1016/j.ejmhg.2017.07.006

Cited by 24 publications

(19 citation statements)

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“…The downstream impact of these cognitive constructs on functional outcomes has primarily considered children with DS, understanding the impact on formal education, and adaptive daily living skills [29][30][31][32][33][34][35]. Given a pattern of findings linking cognitive skills to fine and gross motor control [36][37][38][39][40][41], preliminary small pilot trials to improve cognitive outcomes have more recently focused on the impact of physical activity interventions [42][43][44]. Both behavioral and pharmaceutical interventions are also being piloted to improve cognitive outcomes in individuals with DS [44][45][46][47][48][49][50][51].…”

Section: Cognitive Development and Independencementioning

confidence: 99%

Opportunities, barriers, and recommendations in Down syndrome research

Hendrix¹,

Amon

Abbeduto

et al. 2021

TRD

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BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community. OBJECTIVE: The National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan. METHODS: NDSS and LuMind IDSC assembled over 50 experts across multiple disciplines and organized them in eleven working groups focused on specific issues for people with DS. RESULTS: This review article summarizes the research gaps and recommendations that have the potential to improve the health and quality of life for people with DS within the next decade. CONCLUSIONS: This review highlights many of the scientific gaps that exist in DS research. Based on these gaps, a multidisciplinary group of DS experts has made recommendations to advance DS research. This paper may also aid policymakers and the DS community to build a comprehensive national DS research strategy.

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Section: Cognitive Development and Independencementioning

confidence: 99%

Opportunities, barriers, and recommendations in Down syndrome research

Hendrix¹,

Amon

Abbeduto

et al. 2021

TRD

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“…As Down syndrome is a chronic condition, the impact of its related comorbidities is often lifelong and debilitating. Poor HRQOL has been reported in patients with Down syndrome with regard to physical, emotional, social, psychosocial, and psychological well-being [10][11][12]. Although this is often overlooked, it is important to acknowledge that Down syndrome affects the patient's whole family in many aspects, particularly financially and emotionally, as additional responsibilities are placed on the caregivers [13].…”

Section: Health-related Quality Of Life In Patients With Down Syndromementioning

confidence: 99%

Assessing Health-Related Quality of Life, Morbidity, and Survival Status for Individuals With Down Syndrome in Pakistan (DS-Pak): Protocol for a Web-Based Collaborative Registry

Siddiqui¹,

Ladak²,

Kazi³

et al. 2021

JMIR Res Protoc

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Background Down syndrome is the most common chromosomal disorder, with a global incidence of 1 in 700 live births. However, the true prevalence, associated morbidities, and health-related quality of life (HRQOL) of these individuals and their families are not well documented, especially in low- and middle-income countries such as Pakistan. Disease-specific documentation in the form of a collaborative registry is required to better understand this condition and the associated health outcomes. This protocol paper describes the aims and processes for developing the first comprehensive, web-based collaborative registry for Down syndrome in a Pakistani cohort. Objective This study aims to assess the HRQOL, long-term survival, and morbidity of individuals with Down syndrome by using a web-based collaborative registry. Methods The registry data collection will be conducted at the Aga Khan University Hospital and at the Karachi Down Syndrome Program. Data will be collected by in-person interviews or virtually via telephone or video interviews. Participants of any age and sex with Down syndrome (trisomy 21) will be recruited. After receiving informed consent and assent, a series of tablet-based questionnaires will be administered. The questionnaires aim to assess the sociodemographic background, clinical status, and HRQOL of the participants and their families. Data will be uploaded to a secure cloud server to allow for real-time access to participant responses by the clinicians to plan prompt interventions. Patient safety and confidentiality will be maintained by using multilayer encryption and unique coded patient identifiers. The collected data will be analyzed using IBM SPSS Statistics for Windows, Version 22.0 (IBM Corporation), with the mean and SD of continuous variables being reported. Categorical variables will be analyzed with their percentages being reported and with a P value cutoff of .05. Multivariate regression analysis will be conducted to identify predictors related to the HRQOL in patients with Down syndrome. Survival analysis will be reported using the Kaplan-Meier survival curves. Results The web-based questionnaire is currently being finalized before the commencement of pilot testing. This project has not received funding at the moment (ethical review committee approval reference ID: 2020-3582-11145). Conclusions This registry will allow for a comprehensive understanding of Down syndrome in low- and middle-income countries. This can provide the opportunity for data-informed interventions, which are tailored to the specific needs of this patient population and their families. Although this web-based registry is a proof of concept, it has the potential to be expanded to national, regional, and international levels. International Registered Report Identifier (IRRID) PRR1-10.2196/24901

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“…Fundamental motor skills are currently in scope of attention of many researches from different points and perspectives (Akbari et al, 2009;Payne & Isaacs, 2011;Gashaj, Oberer, Mast, & Roebers, 2019;https://doi.org/10.15405/epsbs.2019.11.53 Corresponding Author: Zdeněk Rechtik Selection and peer-review under responsibility of the Organizing Committee of the conference eISSN: 2357-1330 442 Cadoret et al, 2018;Higashionna et al, 2017;El-Hady, El-Azim, & El, 2018;Oberer, Gashaj, & Roebers, 2018). Deeper understanding of this perspective and important issue can lead to increased quality of education, which is important for future welfare of the society.…”

Section: Problem Statementmentioning

confidence: 99%

“…Many authors in recent years investigate motor skills in connection with different cognitive abilities (Gashaj, Oberer, Mast, & Roebers, 2019;Cadoret et al, 2018;Higashionna et al, 2017;El-Hady, El-Azim, & El, 2018;Oberer, Gashaj, & Roebers, 2018). The results and points of perspectives are different across the field.…”

Section: Introductionmentioning

confidence: 99%