6 results on '"Law, Kiely"'
Search Results
2. Effect of Children's Autism Spectrum Disorder Severity on Family Strain and Sleep Quality: A Cross-Sectional Online Survey in the U.S.
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Durán-Pacheco, Gonzalo, Silkey, Mariabeth, Johnson, Michelle, Liu, Chuang, Clinch, Susanne, Law, Kiely, and Loss, Georg
- Abstract
To better understand the impact of children's autism spectrum disorder (ASD) severity on families, we evaluated pathways through which ASD severity affected child sleep quality, caregiver strain, and caregiver sleep quality. In a cross-sectional analysis through the U.S.-wide Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort. Participants were caregivers of dependents with ASD aged 3-17 years (N = 3150). We found that increased severity strongly affects caregiver strain and child sleep quality. Child sleep quality was a minor mediator of increasing caregiver strain. Caregiver sleep quality depended on ASD severity only through child sleep quality and caregiver strain. Interventions aimed at improving child sleep quality or reducing caregiver strain could positively impact families of children with ASD.
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- 2023
- Full Text
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3. Information Avoidance and Information Seeking among Parents of Children with ASD
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Sicherman, Nachum, Law, Kiely, Lipkin, Paul H., Loewenstein, George, Marvin, Alison R., and Buxbaum, Joseph D.
- Abstract
We estimated the effects of information avoidance and information seeking among parents of children diagnosed with autism spectrum disorder (ASD) on age of diagnosis. An online survey was completed by 1,815 parents of children with ASD. Children of parents who self-reported that they had preferred "not to know," reported diagnoses around 3 months later than other children. Children of parents who raised concerns that they perceived as having been dealt with adequately reported diagnoses about 4 months earlier, but the children of parents who reported raising concerns repeatedly and felt that those concerns were dealt with inadequately were diagnosed over a year later. These findings suggest that failure of educational and healthcare professionals, in either substituting for parents who avoid information, or supporting those who seek information, can significantly delay the age of diagnosis.
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- 2021
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4. Psychometric Validation of the Autism Impact Measure (AIM)
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Houghton, Richard, Monz, Brigitta, Law, Kiely, Loss, Georg, Le Scouiller, Stephanie, de Vries, Frank, and Willgoss, Tom
- Abstract
The Autism impact measure (AIM) is a caregiver-reported questionnaire assessing autism symptom frequency and impact in children, previously shown to have good test-retest reliability, convergent validity and structural validity. This study extended previous work by exploring the AIM's ability to discriminate between 'known-groups' of children, and estimating thresholds for clinically important responses. Data were collected online and electronically on computer and mobile devices; hence, it was also possible to confirm other psychometric properties of the AIM in this format. This study provides confirmatory and additional psychometric validation of the AIM. The AIM offers a valid, quick and inexpensive method for caregivers to report core symptoms of autism spectrum disorder (ASD) including communication deficits, difficulties with social interactions and repetitive behaviors.
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- 2019
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5. The Autism Impact Measure (AIM): Meaningful Change Thresholds and Core Symptom Changes Over One Year from an Online Survey in the U.S.
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Silkey, Mariabeth, Durán-Pacheco, Gonzalo, Johnson, Michelle, Liu, Chuang, Clinch, Susanne, Law, Kiely, and Loss, Georg
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CLINICAL deterioration ,CAREGIVERS ,CONFIDENCE intervals ,HEALTH outcome assessment ,SURVEYS ,AUTISM ,QUALITY of life ,RESEARCH funding ,LONGITUDINAL method ,DISEASE complications ,CHILDREN - Abstract
Validated outcome measures with the capacity to reflect meaningful change are key to assessing potential interventions for autism spectrum disorder (ASD). We derive clinically meaningful change thresholds (MCTs) of the Autism Impact Measure (AIM) and identify factors associated with meaningful change. Baseline and 12-months follow-up survey of caregivers of 2,761 children with ASD aged 3–17 years from the U.S. Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort were analyzed. Using caregiver-reported anchors for change, the 12-month change in estimated AIM MCT (95% confidence interval) for symptom improvement was –4.5 (–7.61, –1.37) points and 9.9 (5.12, 14.59) points for symptom deterioration. These anchor-based MCTs will facilitate future assessments of caregiver-reported change in AIM scores. [ABSTRACT FROM AUTHOR]
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- 2023
- Full Text
- View/download PDF
6. Treatment patterns in children with autism in the United States
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Monz, Brigitta U., Houghton, Richard, Law, Kiely, Loss, Georg, Promovendi PHPC, Epidemiologie, and RS: CAPHRI - R5 - Optimising Patient Care
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Male ,Rural Population ,private insurance ,Adolescent ,Urban Population ,Epidemiology ,IMPACT ,autism spectrum disorder ,Speech Therapy ,US CHILDREN ,DIAGNOSIS ,Cohort Studies ,Occupational Therapy ,children ,Behavior Therapy ,Surveys and Questionnaires ,Humans ,Child ,Research Articles ,service use ,SPECTRUM DISORDER ,INSURANCE MANDATES ,access to care ,Insurance, Health ,Medicaid ,SERVICES ,CARE ,United States ,Caregivers ,Child, Preschool ,Female ,rural ,ACCESS ,urban ,Research Article ,INTERVENTIONS - Abstract
Children with autism receive different types of non-drug treatments. We aimed to describe caregiver-reported pattern of care and its variability by geography and healthcare coverage in a US-wide sample of children aged 3-17 years. We recruited caregivers from the Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort. Two online questionnaires (non-drug treatment, Autism Impact Measure) were completed in September/October 2017. Primary outcome measures were caregiver-reported types and intensities of treatments (behavioral, developmental/relationship, speech and language (SLT), occupational, psychological, "other"; parent/caregiver training) in the previous 12 months. Main explanatory variables were geography and type of healthcare coverage. We investigated associations between the type/intensity of treatments and geography (metropolitan/nonmetropolitan) or coverage (Medicaid vs privately insured by employer) using regression analysis. Caregivers (n = 5,122) were mainly mothers (92.1%) with mean (SD) age of 39.0 (7.3) years. Mean child age was 9.1 (3.9) years; mostly males (80.0%). Almost all children received at least one intervention (96.0%). Eighty percent received SLT or occupational therapy, while 52.0% received both. Behavioral therapy and SLT were significantly more frequent and more intense in metropolitan than in nonmetropolitan areas. No consistently significant associations were seen between healthcare coverage and frequency or intensity of interventions. At least one barrier such as "waiting list" and "no coverage" was reported by 44.8%. In conclusion, in children sampled from SPARK, we observed differences between metropolitan and nonmetropolitan areas, while we did not find significant differences between those privately insured versus Medicaid. Autism Res 2019, 12: 517-526 © 2019 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc. LAY SUMMARY: The American Academy of Child and Adolescent Psychiatry recommends the use of multiple treatment modalities in autism spectrum disorder (ASD). We wanted to understand what types of treatment children (aged 3-17 years) with ASD receive in the United States, how and where the treatments take place and for how long. We invited caregivers from Simons Foundation Powering Autism Research for Knowledge ("SPARK ," https://sparkforautism.org/) to complete the study questions online. Participants reported on utilization of conventional, non-drug treatments for ASD, including behavioral interventions, developmental/relationship interventions, speech and language therapy (SLT), occupational therapy, psychological therapy, and parent/caregiver training. People that completed the study (n = 5,122) were primarily mothers of the child with ASD (92%); most of the children were boys (80%). The ASD care for the child was mostly coordinating by the mother. Almost all children received at least some type of non-drug therapies (96%), most often SLT and/or occupational therapy, mainly provided in school. Behavioral therapy was most often received in public school in rural areas, while at home in urban areas. We saw less use of behavioral therapy and SLT in rural areas, but overall comparable use between children covered by Medicaid and those covered by private insurance. Almost half the caregivers reported at least one barrier to treatment, such as "waiting list" and "no coverage." More than half said that their child benefited "much" or "very much" from the therapies received. While overall non-drug treatment rates for children with ASD were high in the United States in our study, differences existed depending on where the family lives; not only regarding the type of therapy, but also where it takes place.
- Published
- 2019
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