Accepted Manuscript Obesity in Children with Developmental and/or Physical Disabilities Linda Bandini, Ph.D, R.D., Melissa Danielson, MSPH, Layla E. Esposito, Ph.D., John T. Foley, Ph.D., Michael H. Fox, Sc.D., Associate Director for Science, Georgia C. Frey, Ph.D., FACSM, Richard K. Fleming, Ph.D., Associate Professor, Gloria Krahn, Ph.D., MPH, Aviva Must, Ph.D., Professor and Chair, David L. Porretta, Ph.D., Professor, Anne Brown Rodgers, Heidi Stanish, Ph.D., Associate Professor, Tiina Urv, Ph.D., Lawrence C. Vogel, MD, Professor of Pediatrics, Rush Medical College, Assistant Chief of Staff, Medicine, Chief of Pediatrics, Kathleen Humphries, Ph.D.
PII:
S1936-6574(15)00053-9
DOI:
10.1016/j.dhjo.2015.04.005
Reference:
DHJO 392
To appear in:
Disability and Health Journal
Received Date: 12 January 2015 Revised Date:
1 April 2015
Accepted Date: 27 April 2015
Please cite this article as: Bandini L, Danielson M, Esposito LE, Foley JT, Fox, MH, Frey GC, Fleming RK, Krahn G, Must A, Porretta DL, Rodgers AB, Stanish H, Urv T, Vogel LC, Humphries K, Obesity in Children with Developmental and/or Physical Disabilities, Disability and Health Journal (2015), doi: 10.1016/j.dhjo.2015.04.005. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
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Obesity in Children with Developmental and/or Physical Disabilities
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Linda Bandini Ph.D, R.D. Eunice Kennedy Shriver Center/University of Massachusetts Medical School 200 Trapelo Road Waltham, MA. 02452 [email protected]
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Department of Health Sciences Boston University 635 Commonwealth Ave. Boston, Massachusetts 02215
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Melissa Danielson, MSPH Division of Human Development and Disability (DHDD) National Center on Birth Defects and Developmental Disabilities (NCBDDD) Centers for Disease Control and Prevention (CDC) 1600 Clifton Road, NE, MS:E88 Atlanta, Georgia 30333 [email protected]
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Layla E. Esposito, Ph.D. Child Development and Behavior Branch Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health 6100 Executive Blvd. Rockville, MD 20892 [email protected] John T. Foley, Ph.D.
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Physical Education Department, State University of New York College at Cortland, Cortland, New York [email protected] Michael H. Fox, Sc.D. Associate Director for Science Division of Human Development and Disability (DHDD) National Center on Birth Defects and Developmental Disabilities (NCBDDD) Centers for Disease Control and Prevention (CDC) 1600 Clifton Road, NE, MS:E88 Atlanta, Georgia 30333 [email protected] Georgia C. Frey, Ph.D., FACSM
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Gloria Krahn, Ph.D., MPH Barbara E. Knudson Endowed Chair in Family Policy Director of External Relations and Economic Development College of Public Health and Human Sciences Oregon State University 2361 SW Campus Way, Corvallis OR 97331-8687 [email protected] Office: 541-737-3605 Cell: 503-423-7186
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Richard K. Fleming, Ph.D. Associate Professor Department of Exercise and Health Sciences University of Massachusetts Boston 100 Morrissey Boulevard Boston, Massachusetts 02125-3393 [email protected]
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Gallahue Family Professor of Child Development Kinesiology Department Indiana University Bloomington, Indiana [email protected]
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Aviva Must, Ph.D. Professor and Chair Dept. of Public Health & Community Medicine Tufts University School of Medicine 136 Harrison Ave. Boston, MA 02111 [email protected]
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David L. Porretta, Ph.D. Professor Kinesiology PAES Building A-244 305 West 17th Ave. Ohio State University Columbus, Ohio [email protected]
Anne Brown Rodgers NICHD Consultant 202 E. Jefferson St. Falls Church, VA 22046
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Heidi Stanish, Ph.D. Associate Professor Department of Exercise and Health Sciences University of Massachusetts Boston, Massachusetts [email protected]
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703-534-5548 [email protected]
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Tiina Urv, Ph.D. Intellectual and Developmental Disabilities Branch Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health 6100 Executive Blvd. Bethesda, Maryland 20892 [email protected]
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Lawrence C Vogel, MD Professor of Pediatrics, Rush Medical College Assistant Chief of Staff, Medicine Chief of Pediatrics Shriners Hospitals for Children, Chicago 2211 N Oak Park Avenue Chicago, IL 60707 [email protected]
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Kathleen Humphries, Ph.D. The University of Montana Rural Institute on Disabilities 52 Corbin Hall Missoula, MT 59812 [email protected]
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Corresponding Author Layla E. Esposito, Ph.D. Child Development and Behavior Branch Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health 6100 Executive Blvd. Rockville, MD 20892 [email protected] 301-435-6888
Abstract word count: 150
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70 References Running Title: Obesity in Children with Disabilities
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Figures and Tables: 2 figures, Key Words: Obesity, Children, Physical Disability, Developmental Disability, Intellectual Disability
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The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Institutes of Health or the Centers for Disease Control and Prevention.
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There are no conflicts of interest to state and this commentary is not the result of any grant or other source of funding.
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Abstract word count: 150 Words: 2,993
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Figures and Tables: 2 figures
70 References Running Title: Obesity in Children with Disabilities
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Key Words: Obesity, Children, Physical Disability, Developmental Disability, Intellectual Disability
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The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Institutes of Health or the Centers for Disease Control and Prevention.
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There are no conflicts of interest to state and this commentary is not the result of any grant or other source of funding.
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Obesity in Children with Developmental and/or Physical Disabilities
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Abstract Children with developmental or physical disabilities, many of whom face serious healthrelated conditions, also are affected by the current obesity crisis. Although evidence indicates
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that children with disabilities have a higher prevalence of obesity than do children without
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disabilities, little is known of the actual magnitude of the problem in this population. To address
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this concern, the Eunice Kennedy Shriver National Institute of Child Health and Human
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Development (NICHD) held a conference on obesity in children with intellectual,
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developmental, or physical disabilities, bringing together scientists and practitioners in the fields
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of obesity and disability to foster collaboration, identify barriers to healthy weight status in
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populations with disabilities, propose avenues to solutions through research and practice, and
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develop a research agenda to address the problem. This article describes current knowledge
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about prevalence of obesity in this population, discusses factors influencing obesity risk, and
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summarizes recommendations for research presented at the conference.
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Introduction The rise of childhood obesity presents a significant public health challenge.1 Children
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with disabilities, many of whom face serious health-related conditions related to their primary
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disability, also are affected by this health crisis. Although evidence indicates higher prevalence
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of obesity than children without disabilities, little is known of the problem’s magnitude or how it
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varies across disability type.
To address this concern, the Eunice Kennedy Shriver National Institute of Child Health
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and Human Development (NICHD) held a conference in 2010 on obesity in children with
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intellectual, developmental, or physical disabilities, bringing together scientists and practitioners
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in fields of obesity and disability to foster collaboration, identify barriers to healthy weight in
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populations with disabilities, and develop a research agenda. This paper summarizes not
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previously published discussions that occurred at this meeting, including obesity prevalence in
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children with disabilities, increased obesity risk in this population, gaps in knowledge, and
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recommendations for future research.
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Obesity Prevalence in Children with Disabilities
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National survey data can assess prevalence of obesity among children and youth with
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disabilities, yielding representative samples that permit calculation of national prevalence
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estimates. Obesity prevalence in children is estimated based on body mass index (BMI)
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percentiles greater than or equal to the 95th percentile BMI relative to the CDC 2000 growth
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charts.2
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Nationally Representative Data Sources Three nationally representative data sources provide information on prevalence of obesity among children and youth with disabilities 3,4,5. The National Health and Nutrition Examination 3
ACCEPTED MANUSCRIPT Obesity in Children with Disabilities Survey (NHANES), continuously collected and released every two years, combines physical
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examinations with in-person or proxy interviews for dietary assessment. Disability categories
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include: limitations in mobility, vision impairment and hearing impairment. Because NHANES
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total sample of children ages 5-17 is about 1,200 each year, data must be aggregated across
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multiple years to achieve adequate sample sizes for children with disabilities. NHANES is a
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reliable measurement of obesity among children with disabilities, but not for monitoring annual
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changes.
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To better examine changes over time, the National Health Interview Survey (NHIS) can be used. NHIS collects parent-reported data through annual in-person household interviews.
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Since 2008, height and weight data for youth ages 12-17 are publicly available. Its disability
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classifications include limitations in vision, hearing, remembering, and mobility without special
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equipment. Though it has a larger sample size than NHANES, data must still be combined for
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multiple years to achieve a sufficiently robust sample for estimates of obesity prevalence among
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children with disabilities. NHANES provides direct measurements of heights and weights, while
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NHIS data are reported by parents, which tend to be less accurate6.
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The telephone-based National Survey of Children’s Health (NSCH), begun in 2003 and
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conducted every four years, collects information about children from their parents. Analyses of
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NSCH data reported herein have been done on the survey conducted in 2011. This survey
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provides data on more than 95,000 children and adolescents ages 0-17. NSCH allows
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identification of selected health conditions as well as special health care need status through five
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sets of questions relating to medication use, excessive medical care, ability limitations, receipt of
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speech/motor therapy, or receipt of behavioral/emotional treatment. The large sample size
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allows data to be disaggregated to the state level, but NSCH is not conducted annually, and is
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subject to biases associated with telephone surveys7.
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Obesity Prevalence in Children and Youth with Disabilities
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An analysis of 2005-2012 NHANES data covering ages 5-17, 2008-2013 NHIS data covering ages 12-17, and 2011 NSCH data covering ages 10-17 years indicates that children and
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youth with disabilities or special health care needs demonstrate higher rates of obesity than their
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peers without disabling conditions or special needs (Figure 1). As assessed by NHANES,
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children and youth with disabilities were 35% more likely to be obese than peers without
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disabilities. NHIS data indicate that children with disabilities were 59% more likely to be obese
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than those without disabilities; NSCH data showed a 27% greater risk for children with special
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health care needs.
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Disability Type and Obesity Prevalence
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experience higher rates of obesity than children without these limitations. Obesity prevalence for
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children and youth limited in their ability to crawl, walk, run, or play is similar for NHANES and
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NHIS data (NHANES 28.5%, NHIS 28.7%, NSCH 25.7% using slightly different language).
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Children with intellectual or developmental disabilities8 have much higher rates of obesity in the
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NSCH (26.7%) and NHIS (22.5%) than do children without these disabilities (15.2% and 14.4%,
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respectively), though intellectual and learning disabilities are not clearly identified in NHANES.
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Children with vision limitations were identified by NHANES and NHIS, and had higher risk of
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obesity, but a significant association was not present in NSCH data. Hearing limitations were
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not significantly associated with obesity risk on the NHANES and NHIS, but were on the NCSH,
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perhaps because of NSCH’s larger sample size combined with higher obesity rates of youth with
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hearing impairment9 (Figure 2).
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Increased Obesity Risk in Children with Disabilities Little is known about individual and environmental determinants of obesity and their
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relative contributions in children and youth with disabilities. Yet despite limited data and
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heterogeneity, it is possible to make assumptions about factors responsible for higher levels of
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obesity among children and youth with disabilities compared with peers without disabilities.
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One key factor is that children and youth with disabilities, many with limitations that influence
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access to physical activity and proper nutrition, live in the same obesogenic environment as
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other children10,11. Changes in food supply have resulted in an abundance of foods and
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beverages high in calories, fats, and added sugars available for consumption at all times of day
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and wherever children go, with many communities having limited access to affordable healthy
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food. These high calorie products are heavily advertised, whereas advertisements for lower-
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calorie nutritious foods are almost nonexistent 12. On the other side of the energy balance
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equation, barriers to physical activity exist within home, school, and community environments.
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In addition to replacing physical activity, electronic media use can contribute to obesity because
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it is often accompanied by snacking while exposing children to advertisements for high-calorie,
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low-nutrient foods and beverages12.
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Conference participants identified three major areas in which children and youth with
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disabilities face additional challenges that make achieving and maintaining healthy weight
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difficult:
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Biological, Medical, and Developmental
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•
Feeding and difficulties in swallowing that may limit ability to breastfeed. Breastfeeding may be especially difficult and not be adequately supported by professionals, negatively
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altering dietary intake in babies12.
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Metabolic abnormalities disrupting appetite regulation. In certain conditions, such as Prader-Willi syndrome and hypothalamic abnormalities, appetite regulation is disrupted,
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resulting in abnormally increased appetite, with dietary management approaches often not
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sufficient to curb intake13.
disabilities can increase appetite, decrease satiety, or alter metabolism.14,15.
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Sensory issues affecting preferences. Sensory issues such as texture sensitivities can influence food acceptance or refusal and lead to imbalanced or obesogenic diets16.
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Medications affecting appetite. Side effects of medications prescribed to address primary
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Psychiatric or behavioral problems affecting intake. Comorbidities are common in
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intellectual disabilities, such as attention deficit hyperactivity disorder and behavioral
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disorders17. •
Physical limitations restricting physical activity. Poor motor skills may prevent children
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with disabilities from moving fully, thereby limiting their ability to expend energy through
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play and physical activity18.
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Parent, Family, and Caregiver
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Lacking knowledge. Those caring for children with disabilities may lack knowledge about
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nutrition, physical activity, and weight and do not provide a nutritious, calorie-balanced diet
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or opportunities for physical activity. Overfeeding may occur because of a lack of awareness
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of child’s satiety, use of food as a reward or because other health issues faced by a child with
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disabilities may make weight seem less important. •
child to be physically active out of concern for injury or social exclusion by peers19.
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Exhibiting overprotective instincts. Parents and caregivers may be reluctant to allow a
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Lacking anticipatory guidance from health care professionals. Providers caring for children with disabilities may regard weight as less important than other health and
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psychosocial issues, and therefore may not provide proper guidance to parents and the
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child20.
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School and Community
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•
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Lack of tailored services. Services, including adaptations, may not be tailored to the unique
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needs of a child with a disability, and not be adequately integrated into physical education
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classes or alternative activities, such as adapted sports 21. •
Limiting opportunities for physical activity in school and community settings. In
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addition to stigma, children with disabilities experience access barriers such as lack of
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transportation, inability to use traditional playground and sports equipment, and poorly
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understood skills supervision and specialized instruction22,23,24. •
Lacking support systems during transition. Resources provided through school and
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family may no longer be available or must be accessed differently. Transitioning to more
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independent residential settings can alter food-related activities and impact health. For
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example, transitioning into independent living can increase participation in grocery
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shopping, meal planning, and cooking25,26but more food options can also lead to newly
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increased personal responsibility to choose independently 26.
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Transition can be successful if nutrition plans are in place before the move, with support and follow up available 26. When dietetic inputs were not continued through transition,
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follow-up measures one year after discharge into community found significant numbers of
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individuals experiencing unintentional weight changes 27. Adults who moved into more
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independent settings within the previous year experienced more “hours of limitation” due to
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weight problems than those who had not changed living arrangements28.
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Gaps in Knowledge and Recommendations for Research
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Understanding the Scope of the Problem
Although obesity can be a symptom associated with genetic conditions, its etiology is less clear in children with disabilities. Increasing knowledge about dietary intake and energy
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expenditure could help us understand why children with disabilities are disproportionately obese
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and to inform prevention and treatment interventions.
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Dietary Intakes
Little work has been done investigating dietary intake of children and youth with
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disabilities, due in part to challenges in acquiring valid dietary intake data. Children with
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intellectual or developmental disabilities are typically less able to assist in recalling portion size
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than are children without disabilities, while children with oral motor problems may be
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challenged to account for food actually consumed. In addition, the full burden of reporting falls
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to care providers, and children with disabilities who often have multiple care providers,
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including parents, teachers, therapists, and health care providers, making collecting accurate
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dietary data difficult. Limited data suggest that guidelines for energy intake for typically
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developing children may not be appropriate for children with developmental disabilities.
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However, data are not yet sufficient to determine recommended energy intakes for children and
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youth with different types of disabilities. Dietary research needs:
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1. Describe factors that influence children’s dietary intake, and whether they are the same
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2. Determine how food’s sensory characteristics influence food preferences of children with
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and of similar magnitude in children with and without disabilities.
disabilities.
3. Identify successful approaches to healthy eating among families of children with
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disabilities.
4. Calculate recommended levels of energy intake and other nutrients for children and youth with disabilities.
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Energy Expenditure
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Few studies measure daily total energy expenditure or components of daily energy expenditure in children with disabilities. A review of literature on energy expenditure in
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children and adolescents with disabilities published before 2010 identified only two studies of
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children with Down syndrome29,30 , one study of children with spina bifida31 ,and four studies of
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children with cerebral palsy31, 32,33,34 . Even fewer studies examine energy intake and expenditure
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or include body composition measurements. Other gaps in knowledge exist about how changes
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in body composition, alterations in growth, and physical disabilities may affect energy and
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nutrient needs.
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A limited number of studies are published on physical activity habits and its influence on overweight and obesity of children with intellectual and developmental disabilities. Available
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evidence consistently shows children with disabilities have low levels of health-related fitness,
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which is generally associated with a low level of physical activity 35,36,37,38,39. Studies on
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physical activity of children with disabilities suggest low levels among children with autism
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spectrum disorders40,41, cerebral palsy42,43; intellectual disabilities44 including those with Down
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syndrome45, and other disabilities.
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Yet studies indicate that children and youth with disabilities can engage in physical activity at a level that produces improvements in motor skills and physical fitness. Exercise
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programs carried out in community settings have been successful in improving fitness for
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children with severe autism46, intellectual disabilities47, cerebral palsy48, and developmental
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disabilities49 as well as in after school settings for adolescents with visual impairments50.
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Energy expenditure research needs:
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1. Identify unique determinants of physical activity for youth with disabilities through
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2. Determine validity and reliability of instruments to assess physical activity in children with disabilities.
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longitudinal studies.
3. Determine physical activity patterns of specific disability groups through large-scale
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observational studies that include a comparison/control group. 4. Develop, implement, and test physical activity interventions for specific disability groups through long-term controlled trials that include a significant maintenance phase. 5. Determine dose of physical activity needed to increase energy expenditure sufficiently to prevent and/or treat obesity in specific disability groups. 11
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Developing Appropriate Obesity Measurement An accurate obesity definition for youth with disabilities is needed in order to evaluate
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and manage it in clinical settings. This obesity definition should account for race-specific risk
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thresholds as well as disorder-specific characteristics to the extent that they affect bone mass,
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muscle mass, and body fat distribution, and take into account consequences of obesity, such as
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increased risk of cardiovascular conditions, metabolic syndrome, diabetes, and functional
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problems. Equally important is the need for acceptable validity and reliability, as well as
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feasibility for both clinical and epidemiologic purposes.
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Methodological concerns about the appropriateness of measuring obesity using BMI in children and youth with disabilities include difficulty in accurately measuring height and weight
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of wheelchair users and others who cannot stand, differences in body composition resulting from
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certain disabling conditions (e.g., Down syndrome), and the inappropriateness of BMI as a
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measure of obesity in children with limb loss. In addition, using BMI to assess obesity does not
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distinguish fat from muscle mass. This limitation may be especially problematic in children who
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have altered muscle tone or disorders characterized by muscle wasting, such as spinal cord
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injuries. Inaccuracies in measuring height and weight may be more common in children with
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disabilities because of anatomical differences, such as scoliosis or contractures, suggesting that
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standard assessments of BMI, compared to DEXA, hydrodensitometry, and bioelectrical
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impedance analysis, may not accurately estimate obesity in these children. BMI is also subject
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to misclassification errors, especially at overweight levels and during puberty, because of rapidly
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changing height and weight51.
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CDC growth charts (http://www.cdc.gov/growthcharts/cdc_charts.htm) are currently the only tool available for use in this population. Some specialty growth charts exist, but they are
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typically based on small sample sizes for certain populations.52,53,54,55,56, and not available for
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other childhood disabilities.
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1. Assess validity of BMI as a measurement of body fatness in children with physical disabilities or altered body composition.
2. Develop tools that measure adherence with recommended healthy lifestyle behaviors by children and their parents.
3. Conduct observational studies to identify unique risk factors for obesity and evidencebased interventions in children with disabilities to inform potential interventions. 4. Explore clinical utility of measuring resting metabolic rate.
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Obesity measurement research needs:
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Current Knowledge of Obesity Interventions for School-age Children with Disabilities No studies specifically targeting obesity prevention and treatment interventions in children with disabilities have yet been published and children with disabilities are typically not
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included in research involving children without disabilities. Before developing successful obesity
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interventions for children with disabilities, an understanding of obesity intervention for children
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without disabilities is needed that precludes the recommendation of one specific strategy or
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combination of strategies57,58. Reviews of youth obesity intervention offer different conclusions
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according to population of interest, type of intervention, and review methods58,59,60,61,62,63,64.
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Despite diverse findings, a consistent theme is that family-based, lifestyle interventions including
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behavioral programs targeting diet and physical activity lead to clinically and statistically
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significant reductions in youth obesity.58
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Children with disabilities can adhere to short-term, structured exercise and fitness programs, but sustainability of these programs and long term weight loss are unknown. Although
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determinants of obesity in children with disabilities are yet to be established, it is reasonable to
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assume that family-centered lifestyle obesity interventions are also appropriate for youth with
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disabilities. Several expert groups have provided models or practice guidelines for youth obesity
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interventions that emphasize health care provider referral to specialists65,66,67,68,69. Involvement of
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family to successful treatment of youth treatment was identified as important across groups.
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Recommendations for Obesity Interventions and Children with Disabilities Research
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1. Interventions should center on stakeholder collaboration, including individual,
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2. Interventions should be designed using CONSORT statement criteria with sufficient statistical power to support findings58,70.
3. Interventions should be designed across disabilities using both functional and medical classification as directed by the International Classification of Function.
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community, family, school, and recreation and medical.
4. Assessment of unique needs of children with disabilities is necessary to develop interventions that include necessary supports to facilitate success.
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5. Obesity determinants and their relative contributions in children with disabilities should be used to guide development of effective interventions.
6. Obesity interventions designed for those without disabilities need to be systematically
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evaluated, replicated and adapted as needed for children with disabilities.
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Multidisciplinary and multi-site consortia studying obesity interventions in children with 14
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disabilities across geographic and cultural areas should be formed to alleviate the
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problem of small sample sizes.
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7. Community-based participatory research is needed to understand impact of obesity interventions on other life outcomes for children with disabilities such as accessibility,
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socialization, and play.
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8. Interventions must be based on accepted behavior change theories58.
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9. Outcomes should be based on age and development, while process indicators must be
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included in study reports to clarify treatment fidelity and adherence58. 10. Use of mixed methods research should be promoted 58.
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Conclusion
There is a pressing need for increased collaboration among researchers and clinicians addressing obesity in the general population and those with expertise in populations with
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disabilities in order to study antecedents that lead to obesity and develop empirically-driven
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interventions for weight management in this population.
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References
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2. Barlow SE and the Expert Committee. Expert committee recommendations regarding the prevention, assessment, and treatment of child and adolescent overweight and obesity: summary report. Pediatrics 2007;120 Supplement December 2007:S164—S192.
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3. Centers for Disease Control and Prevention (CDC), National Center for Health Statistics (NCHS). National Health and Nutrition Examination Survey Data. Hyattsville (MD): U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics, 2012a. http://www.cdc.gov/nchs/nhanes.htm [Accessed November 19, 2012]
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6. Akinbami, L. J., & Ogden, C. L. (2009). Childhood overweight prevalence in the United States: the impact of parent-reported height and weight. Obesity, 17(8), 1574-1580.
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7. Lee S, Brick JM, Brown ER, et al. Growing cell-phone population and noncoverage bias in traditional random digit dial telephone surveys. Health Serv Res. 2010;45(4):1121-1139.
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9. Dair J, Ellis K, Lieberman L. Prevalence of overweight among deaf children. Am Ann Deaf. 2006;151(3):318-326.
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13. Cassidy SB, Driscoll DJ. Prader-Willi syndrome. Eur J Hum Genet 2009;17(1):3-13.
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ACCEPTED MANUSCRIPT Obesity in Children with Disabilities 28. Seekins T, Traci M, Bainbridge D, Humphries K. (2005). Secondary conditions risk appraisal for adults. In: Nehring W (ed.). Health promotion for persons with intellectual and developmental disabilities: The state of scientific evidence. Washington (DC): American Association on Mental Retardation, 2005.
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29. Bauer J, Teufel U, Doesge C, et al. Energy expenditure in neonates with Down syndrome. J Pediatr 2003;143(2):264-266.
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31. Bandini LG, Schoeller DA, Fukagawa NK, et al. Body composition and energy expenditure in adolescents with cerebral palsy or myelodysplasia. Pediatr Res 1991;29(1):70-77.
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32. Azcue MP, Zello GA, Levy LD, et al. Energy expenditure and body composition in children with spastic quadriplegic cerebral palsy. J Pediatr 1996;129(6):870-876.
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33. Stallings VA, Zemel BS, Davies JC, et al. Energy expenditure of children an and adolescents with severe disabilities: a cerebral palsy model. Am J Clin Nutr 1996;64(4):627-634.
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34. van den Berg-Emons HJ, Saris WH, de Barbanson DC, et al. Daily physical activity of schoolchildren with Spastic Diplegia and of healthy control subjects. J Pediatr 1995;127(4):578-584.
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35. Gillespie, M. Cardiovascular fitness of young Canadian children with and without mental retardation. Educ Train Dev Disabil 2003;38(3):296-301.
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36. Mercer VS, Lewis CL. Hip abductor and knee extensor muscle strength of children with Down syndrome. Pediatr Phys Ther 2001;13(1):18-26.
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37. Pitetti KH, Yarmer DA, Fernhall B. Cardiovascular fitness and body composition of youth with and without mental retardation. Adapt Phys Act Q 2001;18(2):127-141.
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38. Wallen EF, Mullersdorf M, Christensson K, et al. High prevalence of cardio-metabolic risk factors among adolescents with intellectual disability. Acta Paediatr 2009;98(5):853-859.
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39. Winnick JP, Short F. A comparison of the physical fitness of nonretarded and mildly mentally retarded adolescents with cerebral palsy. Adapt Phys Act Q 1991;8(1):43-56.
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40. Pan CY. Objectively measured physical activity between children with autism spectrum disorders and children without disabilities during inclusive recess settings in Taiwan. J Autism Dev Disord 2008;38(7):1292-1301.
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41. Pan CY, Frey GC. Physical activity patterns in youth with autism spectrum disorders. J Autism Dev Disord 2006;36(5):597-606.
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42. Maher CA, Williams MT, Olds T, et al. Physical and sedentary activity in adolescents with cerebral palsy. Dev Med Child Neurol 2007;49(6):450-457.
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ACCEPTED MANUSCRIPT Obesity in Children with Disabilities 43. Orlin M, Palisano R, Chiarello LA, et al. Participation in home, extracurricular, and community activities among children and young people with cerebral palsy. Dev Med Child Neurol 2010;52(2):160-166.
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44. Frey GC, Stanish HI, Temple VA. Physical activity of youth with intellectual disability: Review and research agenda. Adapt Phys Act Q 2008;25(2):95-117.
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45. Shields N, Dodd KJ, Abblitt C. Do children with Down syndrome perform sufficient physical activity to maintain good health? A pilot study. Adapt Phys Act Q 2009;26(4):307-320.
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46. Pitetti KH, Rendoff AD, Grover T, et al. The efficacy of a 9-month treadmill walking program on the exercise capacity and weight reduction for adolescents with severe autism. J Autism Dev Disord 2007;37(6):997-1006.
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47. Halle JW, Gabler-Halle D, Chung YB. Effects of a peer-mediated aerobic conditioning program on fitness levels of youth with mental retardation: Two systematic replications. Ment Retard 1999;37(6):435-448.
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48. Darrah J, Wessel J, Nearingburg P, et al. Evaluation of a community fitness program for adolescents with cerebral palsy. Pediatr Phys Ther 1999;11(1):18-23.
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49. Fragala-Pinkham MA, Haley SM, Goodgold S. Evaluation of a community-based group fitness program for children with disabilities. Pediatr Phys Ther 2006;18(2):159-167.
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50. Cervantes, CM, Porretta, DL. Impact of after school programming on physical activity among adolescents with visual impairments. Adapt Phys Act Q 2013;30, 127-146.
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51. Flegal KM, Ogden CL, Yanovski JA, et al. High adiposity and high body mass index-for-age in US children and adolescents overall and by race-ethnic group. Am J Clin Nutr 2010; 91(4): 1020-6.
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52. Lyon AF, Preece MA, Grant DB. Growth curves for girls with Turner syndrome. Arch Dis Child 1985;60(10):932-935.
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53. Ranke MB, Pfluger H, Rosendahl W, et al. Turner syndrome: Spontaneous growth in 150 cases and review of the literature. Eur J Pediatr 1983;141(2):81-88.
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54. Cronk C, Crocker AC, Pueschel SM, et al. Growth charts for children with Down syndrome: 1 month to 18 years of age. Pediatrics 1988;81(1):102-110.
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55. Myrelid A, Gustafsson J, Ollars B, Anneren G. Growth charts for Down’s syndrome from birth to 18 years of age. Archives of Disease in Childhood 2002;87(2):97-103.
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56. Holm V. A team approach to case management. In Greenswag LR, Alexander RC (eds.). Management of Prader-Willi Syndrome, 2nd ed. New York: Springer-Verlag, 1995.
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57. Doak C, Heitmann BL, Summerbell C, et al. Prevention of childhood obesity—what type of evidence should we consider relevant? Obes Rev 2009; 10(3): 350-356.
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ACCEPTED MANUSCRIPT Obesity in Children with Disabilities 58. Oude Luttikhuis H, Baur L, Jansen H, et al. Interventions for treating obesity in children. Cochrane Database Syst Rev 2009; 21(1): CD001872.
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59. Atlantis E, Barnes EH, Singh MA. Efficacy of exercise for treating overweight in children and adolescents: a systematic review. Int J Obes (Lond) 2006; 30(7): 1027-1040.
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60. Doak CM, Visscher TL, Renders CM, et al. The prevention of overweight and obesity in children and adolescents: a review of programmes. Obes Rev 2006; 7(1): 111-136.
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61. Dobbins M, De Corby K, Robeson P, et al. School-based physical activity programs for promoting physical activity and fitness in children and adolescents aged 6 – 18. Cochrane Database Syst Rev 2009; 21(1): CD007651.
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62. Stice E, Shaw H, Marti CN. A meta-analytic review of obesity prevention programs for children and adolescents: The skinny on interventions that work. Psychol Bull 2006; 132(5): 667-691.
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63. Summerbell CD, Waters E, Edmunds LD, et al. Interventions for preventing obesity in children. Cochrane Database Syst Rev 2005; 20(3), CD001871.
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64. McGovern L, Johnson JN, Paulo R, et al. Clinical review: Treatment of pediatric obesity: A systematic review and meta-analysis of randomized trials. J Clin Endocrinol Metab 2008; 93(12): 4600–4605.
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65. August GP, Caprio S, Fennoy I. et al. Prevention and treatment of pediatric obesity: An endocrine society clinical practice guideline based on expert opinion. J Clin Endocrinol Metab 2008; 93(12), 4576–4599. 66. Kirschenbaum DS, DeUgarte D, Frankel F, et al. Seven steps to success: A handout for parents of overweight children and adolescents. Obes Mana 2009; 5, 29–32.
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67. United States Preventive Task Force. Screening for obesity in children and adolescents: US Preventive Services Task Force recommendation statement. Pediatrics 2010; 125, 361-367.
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68. Lau DC, Douketis JD, Morrison KM, et al. Canadian clinical practice guidelines on the management and prevention of obesity in adults and children [Summary]. CMAJ 2007; 176, S1S13.
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69. Spear BA, Barlow SE, Ervin C, et al. Recommendations for treatment of child and adolescent overweight and obesity. Pediatrics 2007; 120(Suppl. 4), S254–S288.
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70. Begg C, Cho M, Eastwood S, et al. Improving the quality of reporting of randomized controlled trials: the CONSORT statement. JAMA 1996; 276(8): 637-9.
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Figure 1: Prevalence of obesity in children with and without a disability/special health care need using three U.S. national surveys
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25.0%
20.0%
15.0%
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NHIS 2008-2013 Children Aged 12-17
NSCH 2011 Children Aged 10-17
Children with a Disability/Special Health Care Need
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Children without a Disability/Special Health Care Need
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NHANES: National Health and Nutrition Examination Survey NHIS: National Health Interview Survey NSCH: National Survey of Children’s Health
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Figure 2: Prevalence of obesity in children by disability type using three U.S. national surveys 35.0% 30.0%
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Mobility Disability
NHIS 2008-2013 Children Aged 12-17
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NSCH 2011 Children Aged 10-17
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No Disability
PII:
S1936-6574(15)00053-9
DOI:
10.1016/j.dhjo.2015.04.005
Reference:
DHJO 392
To appear in:
Disability and Health Journal
Received Date: 12 January 2015 Revised Date:
1 April 2015
Accepted Date: 27 April 2015
Please cite this article as: Bandini L, Danielson M, Esposito LE, Foley JT, Fox, MH, Frey GC, Fleming RK, Krahn G, Must A, Porretta DL, Rodgers AB, Stanish H, Urv T, Vogel LC, Humphries K, Obesity in Children with Developmental and/or Physical Disabilities, Disability and Health Journal (2015), doi: 10.1016/j.dhjo.2015.04.005. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
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Obesity in Children with Developmental and/or Physical Disabilities
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Linda Bandini Ph.D, R.D. Eunice Kennedy Shriver Center/University of Massachusetts Medical School 200 Trapelo Road Waltham, MA. 02452 [email protected]
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Department of Health Sciences Boston University 635 Commonwealth Ave. Boston, Massachusetts 02215
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Melissa Danielson, MSPH Division of Human Development and Disability (DHDD) National Center on Birth Defects and Developmental Disabilities (NCBDDD) Centers for Disease Control and Prevention (CDC) 1600 Clifton Road, NE, MS:E88 Atlanta, Georgia 30333 [email protected]
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Layla E. Esposito, Ph.D. Child Development and Behavior Branch Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health 6100 Executive Blvd. Rockville, MD 20892 [email protected] John T. Foley, Ph.D.
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Physical Education Department, State University of New York College at Cortland, Cortland, New York [email protected] Michael H. Fox, Sc.D. Associate Director for Science Division of Human Development and Disability (DHDD) National Center on Birth Defects and Developmental Disabilities (NCBDDD) Centers for Disease Control and Prevention (CDC) 1600 Clifton Road, NE, MS:E88 Atlanta, Georgia 30333 [email protected] Georgia C. Frey, Ph.D., FACSM
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Gloria Krahn, Ph.D., MPH Barbara E. Knudson Endowed Chair in Family Policy Director of External Relations and Economic Development College of Public Health and Human Sciences Oregon State University 2361 SW Campus Way, Corvallis OR 97331-8687 [email protected] Office: 541-737-3605 Cell: 503-423-7186
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Richard K. Fleming, Ph.D. Associate Professor Department of Exercise and Health Sciences University of Massachusetts Boston 100 Morrissey Boulevard Boston, Massachusetts 02125-3393 [email protected]
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Gallahue Family Professor of Child Development Kinesiology Department Indiana University Bloomington, Indiana [email protected]
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Aviva Must, Ph.D. Professor and Chair Dept. of Public Health & Community Medicine Tufts University School of Medicine 136 Harrison Ave. Boston, MA 02111 [email protected]
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David L. Porretta, Ph.D. Professor Kinesiology PAES Building A-244 305 West 17th Ave. Ohio State University Columbus, Ohio [email protected]
Anne Brown Rodgers NICHD Consultant 202 E. Jefferson St. Falls Church, VA 22046
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Heidi Stanish, Ph.D. Associate Professor Department of Exercise and Health Sciences University of Massachusetts Boston, Massachusetts [email protected]
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703-534-5548 [email protected]
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Tiina Urv, Ph.D. Intellectual and Developmental Disabilities Branch Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health 6100 Executive Blvd. Bethesda, Maryland 20892 [email protected]
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Lawrence C Vogel, MD Professor of Pediatrics, Rush Medical College Assistant Chief of Staff, Medicine Chief of Pediatrics Shriners Hospitals for Children, Chicago 2211 N Oak Park Avenue Chicago, IL 60707 [email protected]
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Kathleen Humphries, Ph.D. The University of Montana Rural Institute on Disabilities 52 Corbin Hall Missoula, MT 59812 [email protected]
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Corresponding Author Layla E. Esposito, Ph.D. Child Development and Behavior Branch Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health 6100 Executive Blvd. Rockville, MD 20892 [email protected] 301-435-6888
Abstract word count: 150
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Words: 2,993
70 References Running Title: Obesity in Children with Disabilities
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Figures and Tables: 2 figures, Key Words: Obesity, Children, Physical Disability, Developmental Disability, Intellectual Disability
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The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Institutes of Health or the Centers for Disease Control and Prevention.
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There are no conflicts of interest to state and this commentary is not the result of any grant or other source of funding.
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Abstract word count: 150 Words: 2,993
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Figures and Tables: 2 figures
70 References Running Title: Obesity in Children with Disabilities
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Key Words: Obesity, Children, Physical Disability, Developmental Disability, Intellectual Disability
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The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Institutes of Health or the Centers for Disease Control and Prevention.
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There are no conflicts of interest to state and this commentary is not the result of any grant or other source of funding.
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Obesity in Children with Developmental and/or Physical Disabilities
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Abstract Children with developmental or physical disabilities, many of whom face serious healthrelated conditions, also are affected by the current obesity crisis. Although evidence indicates
24
that children with disabilities have a higher prevalence of obesity than do children without
25
disabilities, little is known of the actual magnitude of the problem in this population. To address
26
this concern, the Eunice Kennedy Shriver National Institute of Child Health and Human
27
Development (NICHD) held a conference on obesity in children with intellectual,
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developmental, or physical disabilities, bringing together scientists and practitioners in the fields
29
of obesity and disability to foster collaboration, identify barriers to healthy weight status in
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populations with disabilities, propose avenues to solutions through research and practice, and
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develop a research agenda to address the problem. This article describes current knowledge
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about prevalence of obesity in this population, discusses factors influencing obesity risk, and
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summarizes recommendations for research presented at the conference.
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Introduction The rise of childhood obesity presents a significant public health challenge.1 Children
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with disabilities, many of whom face serious health-related conditions related to their primary
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disability, also are affected by this health crisis. Although evidence indicates higher prevalence
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of obesity than children without disabilities, little is known of the problem’s magnitude or how it
41
varies across disability type.
To address this concern, the Eunice Kennedy Shriver National Institute of Child Health
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and Human Development (NICHD) held a conference in 2010 on obesity in children with
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intellectual, developmental, or physical disabilities, bringing together scientists and practitioners
45
in fields of obesity and disability to foster collaboration, identify barriers to healthy weight in
46
populations with disabilities, and develop a research agenda. This paper summarizes not
47
previously published discussions that occurred at this meeting, including obesity prevalence in
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children with disabilities, increased obesity risk in this population, gaps in knowledge, and
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recommendations for future research.
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Obesity Prevalence in Children with Disabilities
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National survey data can assess prevalence of obesity among children and youth with
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disabilities, yielding representative samples that permit calculation of national prevalence
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estimates. Obesity prevalence in children is estimated based on body mass index (BMI)
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percentiles greater than or equal to the 95th percentile BMI relative to the CDC 2000 growth
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charts.2
56 57 58 59
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Nationally Representative Data Sources Three nationally representative data sources provide information on prevalence of obesity among children and youth with disabilities 3,4,5. The National Health and Nutrition Examination 3
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61
examinations with in-person or proxy interviews for dietary assessment. Disability categories
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include: limitations in mobility, vision impairment and hearing impairment. Because NHANES
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total sample of children ages 5-17 is about 1,200 each year, data must be aggregated across
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multiple years to achieve adequate sample sizes for children with disabilities. NHANES is a
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reliable measurement of obesity among children with disabilities, but not for monitoring annual
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changes.
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To better examine changes over time, the National Health Interview Survey (NHIS) can be used. NHIS collects parent-reported data through annual in-person household interviews.
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Since 2008, height and weight data for youth ages 12-17 are publicly available. Its disability
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classifications include limitations in vision, hearing, remembering, and mobility without special
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equipment. Though it has a larger sample size than NHANES, data must still be combined for
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multiple years to achieve a sufficiently robust sample for estimates of obesity prevalence among
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children with disabilities. NHANES provides direct measurements of heights and weights, while
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NHIS data are reported by parents, which tend to be less accurate6.
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The telephone-based National Survey of Children’s Health (NSCH), begun in 2003 and
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conducted every four years, collects information about children from their parents. Analyses of
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NSCH data reported herein have been done on the survey conducted in 2011. This survey
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provides data on more than 95,000 children and adolescents ages 0-17. NSCH allows
79
identification of selected health conditions as well as special health care need status through five
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sets of questions relating to medication use, excessive medical care, ability limitations, receipt of
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speech/motor therapy, or receipt of behavioral/emotional treatment. The large sample size
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allows data to be disaggregated to the state level, but NSCH is not conducted annually, and is
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subject to biases associated with telephone surveys7.
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Obesity Prevalence in Children and Youth with Disabilities
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An analysis of 2005-2012 NHANES data covering ages 5-17, 2008-2013 NHIS data covering ages 12-17, and 2011 NSCH data covering ages 10-17 years indicates that children and
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youth with disabilities or special health care needs demonstrate higher rates of obesity than their
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peers without disabling conditions or special needs (Figure 1). As assessed by NHANES,
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children and youth with disabilities were 35% more likely to be obese than peers without
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disabilities. NHIS data indicate that children with disabilities were 59% more likely to be obese
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than those without disabilities; NSCH data showed a 27% greater risk for children with special
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health care needs.
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Disability Type and Obesity Prevalence
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All three data sources indicate that children and youth with mobility limitations
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experience higher rates of obesity than children without these limitations. Obesity prevalence for
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children and youth limited in their ability to crawl, walk, run, or play is similar for NHANES and
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NHIS data (NHANES 28.5%, NHIS 28.7%, NSCH 25.7% using slightly different language).
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Children with intellectual or developmental disabilities8 have much higher rates of obesity in the
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NSCH (26.7%) and NHIS (22.5%) than do children without these disabilities (15.2% and 14.4%,
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respectively), though intellectual and learning disabilities are not clearly identified in NHANES.
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Children with vision limitations were identified by NHANES and NHIS, and had higher risk of
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obesity, but a significant association was not present in NSCH data. Hearing limitations were
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not significantly associated with obesity risk on the NHANES and NHIS, but were on the NCSH,
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perhaps because of NSCH’s larger sample size combined with higher obesity rates of youth with
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hearing impairment9 (Figure 2).
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Increased Obesity Risk in Children with Disabilities Little is known about individual and environmental determinants of obesity and their
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relative contributions in children and youth with disabilities. Yet despite limited data and
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heterogeneity, it is possible to make assumptions about factors responsible for higher levels of
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obesity among children and youth with disabilities compared with peers without disabilities.
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One key factor is that children and youth with disabilities, many with limitations that influence
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access to physical activity and proper nutrition, live in the same obesogenic environment as
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other children10,11. Changes in food supply have resulted in an abundance of foods and
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beverages high in calories, fats, and added sugars available for consumption at all times of day
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and wherever children go, with many communities having limited access to affordable healthy
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food. These high calorie products are heavily advertised, whereas advertisements for lower-
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calorie nutritious foods are almost nonexistent 12. On the other side of the energy balance
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equation, barriers to physical activity exist within home, school, and community environments.
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In addition to replacing physical activity, electronic media use can contribute to obesity because
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it is often accompanied by snacking while exposing children to advertisements for high-calorie,
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low-nutrient foods and beverages12.
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Conference participants identified three major areas in which children and youth with
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disabilities face additional challenges that make achieving and maintaining healthy weight
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difficult:
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Biological, Medical, and Developmental
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•
Feeding and difficulties in swallowing that may limit ability to breastfeed. Breastfeeding may be especially difficult and not be adequately supported by professionals, negatively
129
altering dietary intake in babies12.
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Metabolic abnormalities disrupting appetite regulation. In certain conditions, such as Prader-Willi syndrome and hypothalamic abnormalities, appetite regulation is disrupted,
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resulting in abnormally increased appetite, with dietary management approaches often not
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sufficient to curb intake13.
disabilities can increase appetite, decrease satiety, or alter metabolism.14,15.
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•
Sensory issues affecting preferences. Sensory issues such as texture sensitivities can influence food acceptance or refusal and lead to imbalanced or obesogenic diets16.
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Medications affecting appetite. Side effects of medications prescribed to address primary
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Psychiatric or behavioral problems affecting intake. Comorbidities are common in
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intellectual disabilities, such as attention deficit hyperactivity disorder and behavioral
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disorders17. •
Physical limitations restricting physical activity. Poor motor skills may prevent children
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with disabilities from moving fully, thereby limiting their ability to expend energy through
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play and physical activity18.
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Parent, Family, and Caregiver
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Lacking knowledge. Those caring for children with disabilities may lack knowledge about
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nutrition, physical activity, and weight and do not provide a nutritious, calorie-balanced diet
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or opportunities for physical activity. Overfeeding may occur because of a lack of awareness
7
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of child’s satiety, use of food as a reward or because other health issues faced by a child with
150
disabilities may make weight seem less important. •
child to be physically active out of concern for injury or social exclusion by peers19.
152 153
Exhibiting overprotective instincts. Parents and caregivers may be reluctant to allow a
•
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Lacking anticipatory guidance from health care professionals. Providers caring for children with disabilities may regard weight as less important than other health and
155
psychosocial issues, and therefore may not provide proper guidance to parents and the
156
child20.
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School and Community
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•
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Lack of tailored services. Services, including adaptations, may not be tailored to the unique
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needs of a child with a disability, and not be adequately integrated into physical education
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classes or alternative activities, such as adapted sports 21. •
Limiting opportunities for physical activity in school and community settings. In
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addition to stigma, children with disabilities experience access barriers such as lack of
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transportation, inability to use traditional playground and sports equipment, and poorly
165
understood skills supervision and specialized instruction22,23,24. •
Lacking support systems during transition. Resources provided through school and
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family may no longer be available or must be accessed differently. Transitioning to more
168
independent residential settings can alter food-related activities and impact health. For
169
example, transitioning into independent living can increase participation in grocery
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shopping, meal planning, and cooking25,26but more food options can also lead to newly
171
increased personal responsibility to choose independently 26.
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Transition can be successful if nutrition plans are in place before the move, with support and follow up available 26. When dietetic inputs were not continued through transition,
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follow-up measures one year after discharge into community found significant numbers of
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individuals experiencing unintentional weight changes 27. Adults who moved into more
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independent settings within the previous year experienced more “hours of limitation” due to
177
weight problems than those who had not changed living arrangements28.
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Gaps in Knowledge and Recommendations for Research
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Understanding the Scope of the Problem
Although obesity can be a symptom associated with genetic conditions, its etiology is less clear in children with disabilities. Increasing knowledge about dietary intake and energy
184
expenditure could help us understand why children with disabilities are disproportionately obese
185
and to inform prevention and treatment interventions.
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Dietary Intakes
Little work has been done investigating dietary intake of children and youth with
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disabilities, due in part to challenges in acquiring valid dietary intake data. Children with
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intellectual or developmental disabilities are typically less able to assist in recalling portion size
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than are children without disabilities, while children with oral motor problems may be
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challenged to account for food actually consumed. In addition, the full burden of reporting falls
193
to care providers, and children with disabilities who often have multiple care providers,
194
including parents, teachers, therapists, and health care providers, making collecting accurate
195
dietary data difficult. Limited data suggest that guidelines for energy intake for typically
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developing children may not be appropriate for children with developmental disabilities.
197
However, data are not yet sufficient to determine recommended energy intakes for children and
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youth with different types of disabilities. Dietary research needs:
200
1. Describe factors that influence children’s dietary intake, and whether they are the same
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2. Determine how food’s sensory characteristics influence food preferences of children with
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and of similar magnitude in children with and without disabilities.
disabilities.
3. Identify successful approaches to healthy eating among families of children with
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disabilities.
4. Calculate recommended levels of energy intake and other nutrients for children and youth with disabilities.
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Energy Expenditure
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Few studies measure daily total energy expenditure or components of daily energy expenditure in children with disabilities. A review of literature on energy expenditure in
212
children and adolescents with disabilities published before 2010 identified only two studies of
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children with Down syndrome29,30 , one study of children with spina bifida31 ,and four studies of
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children with cerebral palsy31, 32,33,34 . Even fewer studies examine energy intake and expenditure
215
or include body composition measurements. Other gaps in knowledge exist about how changes
216
in body composition, alterations in growth, and physical disabilities may affect energy and
217
nutrient needs.
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A limited number of studies are published on physical activity habits and its influence on overweight and obesity of children with intellectual and developmental disabilities. Available
220
evidence consistently shows children with disabilities have low levels of health-related fitness,
221
which is generally associated with a low level of physical activity 35,36,37,38,39. Studies on
222
physical activity of children with disabilities suggest low levels among children with autism
223
spectrum disorders40,41, cerebral palsy42,43; intellectual disabilities44 including those with Down
224
syndrome45, and other disabilities.
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Yet studies indicate that children and youth with disabilities can engage in physical activity at a level that produces improvements in motor skills and physical fitness. Exercise
227
programs carried out in community settings have been successful in improving fitness for
228
children with severe autism46, intellectual disabilities47, cerebral palsy48, and developmental
229
disabilities49 as well as in after school settings for adolescents with visual impairments50.
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Energy expenditure research needs:
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1. Identify unique determinants of physical activity for youth with disabilities through
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2. Determine validity and reliability of instruments to assess physical activity in children with disabilities.
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longitudinal studies.
3. Determine physical activity patterns of specific disability groups through large-scale
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observational studies that include a comparison/control group. 4. Develop, implement, and test physical activity interventions for specific disability groups through long-term controlled trials that include a significant maintenance phase. 5. Determine dose of physical activity needed to increase energy expenditure sufficiently to prevent and/or treat obesity in specific disability groups. 11
ACCEPTED MANUSCRIPT Obesity in Children with Disabilities 241 242
Developing Appropriate Obesity Measurement An accurate obesity definition for youth with disabilities is needed in order to evaluate
244
and manage it in clinical settings. This obesity definition should account for race-specific risk
245
thresholds as well as disorder-specific characteristics to the extent that they affect bone mass,
246
muscle mass, and body fat distribution, and take into account consequences of obesity, such as
247
increased risk of cardiovascular conditions, metabolic syndrome, diabetes, and functional
248
problems. Equally important is the need for acceptable validity and reliability, as well as
249
feasibility for both clinical and epidemiologic purposes.
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Methodological concerns about the appropriateness of measuring obesity using BMI in children and youth with disabilities include difficulty in accurately measuring height and weight
252
of wheelchair users and others who cannot stand, differences in body composition resulting from
253
certain disabling conditions (e.g., Down syndrome), and the inappropriateness of BMI as a
254
measure of obesity in children with limb loss. In addition, using BMI to assess obesity does not
255
distinguish fat from muscle mass. This limitation may be especially problematic in children who
256
have altered muscle tone or disorders characterized by muscle wasting, such as spinal cord
257
injuries. Inaccuracies in measuring height and weight may be more common in children with
258
disabilities because of anatomical differences, such as scoliosis or contractures, suggesting that
259
standard assessments of BMI, compared to DEXA, hydrodensitometry, and bioelectrical
260
impedance analysis, may not accurately estimate obesity in these children. BMI is also subject
261
to misclassification errors, especially at overweight levels and during puberty, because of rapidly
262
changing height and weight51.
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CDC growth charts (http://www.cdc.gov/growthcharts/cdc_charts.htm) are currently the only tool available for use in this population. Some specialty growth charts exist, but they are
265
typically based on small sample sizes for certain populations.52,53,54,55,56, and not available for
266
other childhood disabilities.
269 270 271 272 273 274
1. Assess validity of BMI as a measurement of body fatness in children with physical disabilities or altered body composition.
2. Develop tools that measure adherence with recommended healthy lifestyle behaviors by children and their parents.
3. Conduct observational studies to identify unique risk factors for obesity and evidencebased interventions in children with disabilities to inform potential interventions. 4. Explore clinical utility of measuring resting metabolic rate.
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Obesity measurement research needs:
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Current Knowledge of Obesity Interventions for School-age Children with Disabilities No studies specifically targeting obesity prevention and treatment interventions in children with disabilities have yet been published and children with disabilities are typically not
280
included in research involving children without disabilities. Before developing successful obesity
281
interventions for children with disabilities, an understanding of obesity intervention for children
282
without disabilities is needed that precludes the recommendation of one specific strategy or
283
combination of strategies57,58. Reviews of youth obesity intervention offer different conclusions
284
according to population of interest, type of intervention, and review methods58,59,60,61,62,63,64.
285
Despite diverse findings, a consistent theme is that family-based, lifestyle interventions including
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behavioral programs targeting diet and physical activity lead to clinically and statistically
287
significant reductions in youth obesity.58
288
Children with disabilities can adhere to short-term, structured exercise and fitness programs, but sustainability of these programs and long term weight loss are unknown. Although
290
determinants of obesity in children with disabilities are yet to be established, it is reasonable to
291
assume that family-centered lifestyle obesity interventions are also appropriate for youth with
292
disabilities. Several expert groups have provided models or practice guidelines for youth obesity
293
interventions that emphasize health care provider referral to specialists65,66,67,68,69. Involvement of
294
family to successful treatment of youth treatment was identified as important across groups.
295
Recommendations for Obesity Interventions and Children with Disabilities Research
296
1. Interventions should center on stakeholder collaboration, including individual,
300 301 302 303 304 305 306
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2. Interventions should be designed using CONSORT statement criteria with sufficient statistical power to support findings58,70.
3. Interventions should be designed across disabilities using both functional and medical classification as directed by the International Classification of Function.
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community, family, school, and recreation and medical.
4. Assessment of unique needs of children with disabilities is necessary to develop interventions that include necessary supports to facilitate success.
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5. Obesity determinants and their relative contributions in children with disabilities should be used to guide development of effective interventions.
6. Obesity interventions designed for those without disabilities need to be systematically
307
evaluated, replicated and adapted as needed for children with disabilities.
308
Multidisciplinary and multi-site consortia studying obesity interventions in children with 14
ACCEPTED MANUSCRIPT Obesity in Children with Disabilities 309
disabilities across geographic and cultural areas should be formed to alleviate the
310
problem of small sample sizes.
311
7. Community-based participatory research is needed to understand impact of obesity interventions on other life outcomes for children with disabilities such as accessibility,
313
socialization, and play.
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8. Interventions must be based on accepted behavior change theories58.
315
9. Outcomes should be based on age and development, while process indicators must be
317
318 319
included in study reports to clarify treatment fidelity and adherence58. 10. Use of mixed methods research should be promoted 58.
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Conclusion
There is a pressing need for increased collaboration among researchers and clinicians addressing obesity in the general population and those with expertise in populations with
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disabilities in order to study antecedents that lead to obesity and develop empirically-driven
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interventions for weight management in this population.
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ACCEPTED MANUSCRIPT Obesity in Children with Disabilities 12. National Research Council. Preventing Childhood Obesity: Health in the Balance. Washington, DC: The National Academies Press, 2005.
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ACCEPTED MANUSCRIPT Obesity in Children with Disabilities 28. Seekins T, Traci M, Bainbridge D, Humphries K. (2005). Secondary conditions risk appraisal for adults. In: Nehring W (ed.). Health promotion for persons with intellectual and developmental disabilities: The state of scientific evidence. Washington (DC): American Association on Mental Retardation, 2005.
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39. Winnick JP, Short F. A comparison of the physical fitness of nonretarded and mildly mentally retarded adolescents with cerebral palsy. Adapt Phys Act Q 1991;8(1):43-56.
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ACCEPTED MANUSCRIPT Obesity in Children with Disabilities 43. Orlin M, Palisano R, Chiarello LA, et al. Participation in home, extracurricular, and community activities among children and young people with cerebral palsy. Dev Med Child Neurol 2010;52(2):160-166.
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ACCEPTED MANUSCRIPT Obesity in Children with Disabilities 58. Oude Luttikhuis H, Baur L, Jansen H, et al. Interventions for treating obesity in children. Cochrane Database Syst Rev 2009; 21(1): CD001872.
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69. Spear BA, Barlow SE, Ervin C, et al. Recommendations for treatment of child and adolescent overweight and obesity. Pediatrics 2007; 120(Suppl. 4), S254–S288.
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70. Begg C, Cho M, Eastwood S, et al. Improving the quality of reporting of randomized controlled trials: the CONSORT statement. JAMA 1996; 276(8): 637-9.
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Figure 1: Prevalence of obesity in children with and without a disability/special health care need using three U.S. national surveys
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20.0%
15.0%
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0.0% NHANES 2005-2012 Children Aged 5-17
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NHIS 2008-2013 Children Aged 12-17
NSCH 2011 Children Aged 10-17
Children with a Disability/Special Health Care Need
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NHANES: National Health and Nutrition Examination Survey NHIS: National Health Interview Survey NSCH: National Survey of Children’s Health
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Figure 2: Prevalence of obesity in children by disability type using three U.S. national surveys 35.0% 30.0%
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5.0% 0.0%
Mobility Disability
NHIS 2008-2013 Children Aged 12-17
Vision Impairment
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Hearing Impairment
No Disability
