journal
Journals Journal of Intellectual Disabi...

Journal of Intellectual Disability Research : JIDR

https://read.qxmd.com/read/38009976/child-characteristics-associated-with-child-quality-of-life-and-parenting-stress-in-angelman-syndrome
#41
JOURNAL ARTICLE
D A Hagenaar, K G C B Bindels-de Heus, K Lubbers, L W Ten Hoopen, A B Rietman, P F A de Nijs, M H J Hillegers, H A Moll, M C Y de Wit, G C Dieleman, S E Mous
BACKGROUND: Angelman syndrome (AS) is a rare neurodevelopmental disorder characterised by severe intellectual disability, movement disorder, epilepsy, sleeping problems, and behavioural issues. Little is known on child health-related quality of life (HRQoL) in AS. AS family studies have reported elevated parenting stress and a high impact of the child's syndrome on the parent. It is unclear which factors influence child HRQoL and parenting stress/impact in AS. METHODS: We collected data prospectively through standardised clinical assessments of children with AS at the ENCORE Expertise centre for Angelman Syndrome at the Erasmus MC Sophia Children's Hospital...
November 27, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37984471/the-physical-and-psychosocial-impact-of-a-school-based-running-programme-for-adolescents-with-disabilities
#42
JOURNAL ARTICLE
J Campagna, K Czyszczon, J Little, C Selby, L Wick, D Ferreira, K Oriel
BACKGROUND: Adolescents with disabilities have fewer opportunities to participate in community-based fitness programmes. The purpose of this study was to examine the impact of a school-based running programme at a local middle school in Lebanon, Pennsylvania, on fitness and quality of life (QoL) in children with physical and cognitive disabilities in a life-skills classroom. METHODS: Nineteen adolescents with diagnosed disabilities including intellectual disability (ID), autism spectrum disorder and Down syndrome were recruited from three life-skills classrooms to participate in a school-based running programme...
November 20, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37964712/functional-fitness-of-adults-with-down-syndrome-a-longitudinal-study
#43
JOURNAL ARTICLE
P H Boer
BACKGROUND: Individuals with Down syndrome (DS) are born with and develop many health-related complications. The purpose of this study was to determine the longitudinal functional fitness profile of adults with DS. METHODS: The functional fitness of adults with DS was tested twice, 12 years apart. Sixty-six adults with DS were tested for body mass, stature and 10 functional fitness tests. Data were categorised according to gender and age-specific categories...
November 15, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37933771/on-field-physical-activity-of-special-olympics-athletes-and-unified-partners-during-the-2022-special-olympics-world-unified-cup
#44
JOURNAL ARTICLE
L R Ketcheson, E A Pitchford, J Hauck, F Loetzner
BACKGROUND: Special Olympics is a sport organisation spearheading efforts to increase physical activity accessibility through inclusive sport. The Unified Sports® initiative brings together Special Olympics athletes (with intellectual disabilities) and Unified partners (without a disability) in sport training and competition on the same team. The study aims to objectively evaluate differences in on-field physical activity levels between athletes and partners during the 2022 Special Olympics World Unified Cup, an international soccer (i...
November 7, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37921399/attention-challenges-in-kabuki-syndrome
#45
JOURNAL ARTICLE
A J Kalinousky, T Rapp, J R Harris
BACKGROUND: Understanding the specific neurobehavioural profile of rare genetic diseases enables clinicians to provide the best possible care for patients and families, including prognostic and treatment advisement. Previous studies suggested that a subset of individuals with Kabuki syndrome (KS), a genetic disorder causing intellectual disability and other neurodevelopmental phenotypes, have attentional deficits. However, these studies looked at relatively small numbers of molecularly confirmed cases and often used retrospective clinical data instead of standardised assessments...
November 3, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37916390/impaired-communication-ability-in-sox11-syndrome
#46
JOURNAL ARTICLE
H Smith, R Al-Jawahiri, L Stokes, M Freeth, S Fricke, D Matthews, A McNeill
BACKGROUND: Speech and language skills are important for social interaction and learning. This study characterised the communication abilities of verbal individuals with SOX11 syndrome using a standardised parent/carer questionnaire, the Children's Communication Checklist (CCC-2). METHOD: Thirteen parent/carers of verbal individuals (aged 5-19 years) diagnosed with SOX11 syndrome completed the CCC-2. In order to contextualise findings, responses were compared to norms and to data from Noonan syndrome, a relatively well-known genetic diagnosis associated with communication impairment...
November 2, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37899501/obesity-diabetes-and-their-metabolic-correlates-in-middle-aged-adults-with-down-syndrome
#47
JOURNAL ARTICLE
J A Luchsinger, D Pang, S J Krinsky-McHale, N Schupf, J H Lee, W Silverman, W B Zigman
BACKGROUND: Obesity in adults without Down syndrome is associated with an adverse metabolic profile including high prevalence of pre-diabetes and diabetes, high levels of insulin, non-high-density lipoprotein (HDL) cholesterol, leptin and high-sensitivity C-reactive protein (hsCRP) and low levels of HDL and adiponectin. We examined whether obesity in middle-aged adults with Down syndrome is also related to an adverse metabolic profile. METHODS: This cross-sectional study included 143 adults with Down syndrome, with a mean age of 55...
October 29, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37859301/human-immunodeficiency-virus-diagnosis-and-care-among-adults-with-intellectual-and-developmental-disabilities-who-are-publicly-insured
#48
JOURNAL ARTICLE
T G James, M S Argenyi, A Gravino, T W Benevides
BACKGROUND: This study aimed to assess the prevalence of human immunodeficiency virus (HIV) testing, HIV diagnosis and receipt of HIV care among adults with intellectual and developmental disabilities (IDDs) who are publicly insured in the USA. DESIGN: This study is a cross-sectional analysis of Medicare-Medicaid linked data of adults with IDD who were publicly insured in 2012 (n = 878 186). METHODS: We estimated adjusted prevalence ratios of HIV testing, diagnosis and receipt of antiretroviral therapy (ART)...
October 19, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37857569/sleep-in-people-with-and-without-intellectual-disabilities-a-systematic-review-and-meta-analysis
#49
REVIEW
E G Browne, J R King, A D R Surtees
BACKGROUND: Sleep problems are regularly reported in people with intellectual disabilities. Recent years have seen a substantial increase in studies comparing sleep in people with intellectual disabilities to control participants, with an increase in the use of validated, objective measures. Emerging patterns of differences in sleep time and sleep quality warrant pooled investigation. METHODS: A systematic search was conducted across three databases (Ovid Embase, PsycInfo and Medline) and returned all papers comparing sleep in people with intellectual disabilities to a control group, published since the last meta-analysis on the topic...
October 19, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37821423/unravelling-the-link-between-physical-activity-and-peer-social-connectedness-in-young-people-with-intellectual-disabilities-a-systematic-review-of-quantitative-studies
#50
REVIEW
L Maenhout, C A Melville
BACKGROUND: There is limited understanding of the context surrounding physical activity (PA) of young people with intellectual disabilities (ID), which has an impact on the development of PA promotion programmes. Peer social connectedness seems to be a vital correlate to focus on, but has not been included in current studies examining the correlates and determinants of PA levels of young people with ID. This study aims to synthesise the evidence on (1) the social constructs researchers have used to conceptualise peer social connectedness in a PA context among young people with ID, (2) the measurement tools that have been used and (3) the relationship between PA and peer social connectedness in young people with ID...
October 11, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37815212/the-inclusion-of-adults-with-intellectual-disabilities-in-health-research-challenges-barriers-and-opportunities-a-mixed-method-study-among-stakeholders-in-england
#51
JOURNAL ARTICLE
R Bishop, R Laugharne, N Shaw, A M Russell, D Goodley, S Banerjee, E Clack, R Shankar
BACKGROUND: The study aims to understand system barriers to research participation for people with intellectual disabilities. METHODS: A mixed-methods approach examined the inclusivity of people with intellectual disabilities (IDs) in a random sample of National Institute for Health and Care Research (NIHR) studies conducted in 2019-2020. An online questionnaire (stage 1) was sent to the selected studies lead investigators. An expert by experience panel of 25 people with intellectual disabilities (IDs, stage 2), discussed the stage 1 feedback...
October 10, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37779228/causes-of-mortality-among-adults-with-down-syndrome-before-and-after-the-covid-19-pandemic-in-spain
#52
JOURNAL ARTICLE
Beatriz Sánchez Moreno, Laura Adán-Lirola, Javier Rubio-Serrano, Diego Real de Asúa
BACKGROUND: The life expectancy of people with Down syndrome (DS) is limited by Alzheimer's disease (AD)-related deaths, mainly due to respiratory infections. The emergence of the COVID-19 pandemic could have changed known, past trends in mortality in this population. We analysed the differences in causes of mortality between individuals with DS deceased before and after the onset of the pandemic. METHOD: This is a cross-sectional study of adults with DS recruited at a tertiary, university outpatient clinic in Madrid, Spain...
October 1, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37732551/mental-wellbeing-and-intellectual-disability
#53
JOURNAL ARTICLE
(no author information available yet)
No abstract text is available yet for this article.
October 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37732550/prof-em-dr-ante-anton-do%C3%A5-en-1939-2023
#54
JOURNAL ARTICLE
(no author information available yet)
No abstract text is available yet for this article.
October 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37740553/adaptive-behaviour-deficits-in-individuals-with-3q29-deletion-syndrome
#55
JOURNAL ARTICLE
R M Pollak, T L Burrell, J F Cubells, C Klaiman, M M Murphy, C A Saulnier, E F Walker, S P White, J G Mulle
BACKGROUND: 3q29 deletion syndrome (3q29del) is associated with a significantly increased risk for neurodevelopmental and neuropsychiatric phenotypes. Mild to moderate intellectual disability (ID) is common in this population, and previous work by our team identified substantial deficits in adaptive behaviour. However, the full profile of adaptive function in 3q29del has not been described nor has it been compared with other genomic syndromes associated with elevated risk for neurodevelopmental and neuropsychiatric phenotypes...
September 22, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37732721/effectiveness-of-the-kaufman-brief-intelligence-test-in-people-with-prader-willi-syndrome
#56
JOURNAL ARTICLE
M P Jaime, A Gerk, J Stegmann
BACKGROUND: Evaluating intelligence using conventional tools is very complex in patients with Prader-Willi Syndrome (PWS), as it is time consuming and requires levels of care that are difficult to sustain for this population. Therefore, we explore the ability of a brief test to assess intelligence in these patients. METHODS: This study included individuals with a genetically confirmed diagnosis of PWS, with regular attendance at transdisciplinary treatment in an institution dedicated to the care of rare diseases in Argentina...
September 21, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37731317/investigation-of-cardiopulmonary-parameters-motor-development-and-muscle-strength-in-children-with-down-syndrome-with-and-without-congenital-heart-disease
#57
JOURNAL ARTICLE
T Siyah, M Saglam, N V Yagli, I Ertugrul, H H Aykan, T Karagoz
BACKGROUND: Children with Down syndrome (DS) frequently have concomitant clinical problems. There are no studies in the literature evaluating gross motor development and handgrip strength in the presence of congenital heart disease (CHD), which is one of the most common comorbidities in population with DS. The aim of this study was to compare cardiopulmonary parameters, gross motor development and handgrip strength in children with DS with and without CHD. METHODS: A total of 28 children with DS (14 with CHD and 14 without CHD) were evaluated...
September 20, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37723929/the-associations-among-executive-planning-self-determination-and-quality-of-life-in-adolescents-with-intellectual-disability
#58
JOURNAL ARTICLE
M Lui, G K B Lau, P K S Wong
BACKGROUND: Skills such as planning and problem solving that are required in self-determination can be cognitively demanding. It has not yet been examined whether executive functions and intelligence are associated with levels of self-determination in individuals with intellectual disability (ID), and how that is related to quality of life (QoL). This study examined the associations among executive functions, intelligence, self-determination, and QoL in adolescents with ID. METHODS: Seventy-nine adolescents aged between 17 and 20 years with mild ID participated in the study...
September 18, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37699865/adult-psychiatric-and-psychosocial-outcomes-of-children-with-mild-intellectual-disability-a-register-follow-up-of-a-population-based-cohort
#59
JOURNAL ARTICLE
V Landgren, E Hedman, I Lindblad, C Gillberg, E Fernell
BACKGROUND: Very few longitudinal psychiatric and psychosocial outcome studies of children with mild intellectual disability (MID) have been performed. METHODS: The study group was population based and consisted of 82 individuals, born in 1979-1985 and diagnosed in childhood at ages between 3 and 15 years with MID. In the present study, register data regarding school attendance, employment, economic situation, psychiatric diagnoses and criminal sentences were retrieved for the years 1997-2018, when the individuals were up to 39 years old...
September 12, 2023: Journal of Intellectual Disability Research: JIDR
https://read.qxmd.com/read/37698385/neuromuscular-control-of-masticatory-muscles-in-people-with-intellectual-disability-middle-aged-adults-and-older-adults
#60
JOURNAL ARTICLE
C Cruz-Montecinos, J Valderrama-Mejías, F M Martínez-Arnau, J J Carrasco, R Núñez-Cortés, S Cortés-Amador
BACKGROUND: Motor control issues are common for people with intellectual disabilities (PWID), resulting in difficulties with basic activities of daily living, including eating. Mastication, which is crucial for digestion and overall health, is poorly understood in this population. PWID shows frailty similar to older people, highlighting the importance of comparing masticatory motor control with older adults. This study compared the neuromuscular control of the masticatory muscles in middle-aged, PWID and older adults...
September 12, 2023: Journal of Intellectual Disability Research: JIDR
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