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https://www.readbyqxmd.com/read/27833905/perspectives-on-disease-and-disability-in-child-health-the-case-of-childhood-neurodisability
#1
REVIEW
Anton Rodney Miller, Peter Rosenbaum
Chronic health conditions are often associated with what is termed disability. Traditional thinking has focused on diagnosis and treatment of chronic diseases and disorders, with less attention to people's functional abilities and their contextual determinants. Understanding all of these factors is integral to addressing the predicaments and needs of persons with chronic conditions. However, these complementary yet distinct "worldviews" reflected in what we call disease and disability perspectives often remain, at best, only vaguely articulated...
2016: Frontiers in Public Health
https://www.readbyqxmd.com/read/27640996/participation-both-a-means-and-an-end-a-conceptual-analysis-of-processes-and-outcomes-in-childhood-disability
#2
Christine Imms, Mats Granlund, Peter H Wilson, Bert Steenbergen, Peter L Rosenbaum, Andrew M Gordon
This review outlines a conceptual approach to inform research and practice aimed at supporting children whose lives are complicated by impairment and/or chronic medical conditions, and their families. 'Participation' in meaningful life activities should be an essential intervention goal, to meet the challenges of healthy growth and development, and to provide opportunities to help ensure that young people with impairments reach their full potential across their lifespan. Intervention activities and research can focus on participation as either an independent or dependent variable...
September 19, 2016: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/27628485/physical-fitness-in-people-with-posttraumatic-stress-disorder-a-systematic-review
#3
Davy Vancampfort, Brendon Stubbs, Justin Richards, Philip B Ward, Joseph Firth, Felipe B Schuch, Simon Rosenbaum
PURPOSE: People with posttraumatic stress disorder (PTSD) have an increased risk of cardiovascular diseases (CVD). Physical fitness is a key modifiable risk factor for CVD and associated mortality. We reviewed the evidence-base regarding physical fitness in people with PTSD. METHODS: Two independent reviewers searched PubMed, CINAHL, PsycARTICLES, PEDro, and SPORTDiscus from inception until May 2016 using the key words "fitness" OR "exercise" AND "posttraumatic stress disorder" OR "PTSD"...
September 15, 2016: Disability and Rehabilitation
https://www.readbyqxmd.com/read/27618847/participation-in-out-of-home-environments-for-young-children-with-and-without-developmental-disabilities
#4
Chun Yi Lim, Mary Law, Mary Khetani, Nancy Pollock, Peter Rosenbaum
This study examines caregivers' perceptions of participation patterns and environmental supports and barriers for young children with and without developmental disabilities within their child care/preschool and community settings. The Young Children's Participation and Environment Measure (YC-PEM) was completed by 151 parents of Singaporean children (0-7 years old) with and without developmental disabilities. Setting-specific summary and item-level scores of these children were compared using ANCOVA, Mann-Whitney U, and Pearson chi-square tests...
July 2016: OTJR: Occupation, Participation and Health
https://www.readbyqxmd.com/read/27444634/positive-cardiometabolic-health-for-adults-with-intellectual-disability-an-early-intervention-framework
#5
Julian Trollor, Carmela Salomon, Jackie Curtis, Andrew Watkins, Simon Rosenbaum, Katherine Samaras, Philip B Ward
Cardiometabolic morbidity is a significant contributor to the poorer health outcomes experienced by people with intellectual disability (ID). Tailoring cardiometabolic monitoring tools developed for the general population to better fit the altered risk profiles and extra needs of people with ID may help to improve health outcomes. This paper describes a new cardiometabolic monitoring framework designed to address the extra needs of people with ID. The framework was adapted from a generalist guideline after a process of extensive consultation with the original authors and over 30 ID and cardiometabolic experts...
July 22, 2016: Australian Journal of Primary Health
https://www.readbyqxmd.com/read/27283848/is-a-family-centred-initiative-a-family-centred-service-a-case-of-a-conductive-education-setting-for-children-with-cerebral-palsy
#6
R Schenker, S Parush, P Rosenbaum, A Rigbi, A Yochman
BACKGROUND: From the moment a child is diagnosed as having cerebral palsy, families have to cope on a daily basis with the multifaceted challenges of life-long disability management. Family-centred service is embraced as a 'best practice' model because of accumulating evidence supporting its positive influence on parents and children's outcomes. Nevertheless, research comparing parent and provider perspectives on family-centred practices of educational service providers in education settings is scarce...
June 9, 2016: Child: Care, Health and Development
https://www.readbyqxmd.com/read/27188686/cerebral-palsy
#7
H Kerr Graham, Peter Rosenbaum, Nigel Paneth, Bernard Dan, Jean-Pierre Lin, Diane L Damiano, Jules G Becher, Deborah Gaebler-Spira, Allan Colver, Dinah S Reddihough, Kylie E Crompton, Richard L Lieber
Cerebral palsy is the most common cause of childhood-onset, lifelong physical disability in most countries, affecting about 1 in 500 neonates with an estimated prevalence of 17 million people worldwide. Cerebral palsy is not a disease entity in the traditional sense but a clinical description of children who share features of a non-progressive brain injury or lesion acquired during the antenatal, perinatal or early postnatal period. The clinical manifestations of cerebral palsy vary greatly in the type of movement disorder, the degree of functional ability and limitation and the affected parts of the body...
2016: Nature Reviews. Disease Primers
https://www.readbyqxmd.com/read/27171024/developmental-disability-shouldn-t-grandparents-have-a-place-at-the-table
#8
EDITORIAL
Peter Rosenbaum
No abstract text is available yet for this article.
June 2016: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/27129405/rethinking-fatigue-in-gaucher-disease
#9
REVIEW
Y Chen Zion, E Pappadopulos, M Wajnrajch, H Rosenbaum
BACKGROUND: Gaucher disease (GD) is a rare lysosomal storage disease caused by deficiency in the enzyme beta-glucocerebrosidase. Along with visceral, hematologic, and bone manifestations, patients may experience chronic fatigue resulting in functional disability and reduced quality of life. Management of the disease includes therapeutic intervention, supportive therapies, and regular monitoring of all clinically relevant disease signs and symptoms. However, current practice guidelines do not include measurement of fatigue or therapeutic goals for fatigue...
2016: Orphanet Journal of Rare Diseases
https://www.readbyqxmd.com/read/27127257/using-the-courts-to-shape-medicaid-policy-olmstead-v-l-c-by-zimring-and-its-community-integration-legacy
#10
Sara Rosenbaum
In Olmstead v. L.C. by Zimring, the United States Supreme Court addressed the relationship between the Americans with Disabilities Act (ADA), a landmark in US civil rights law, and the Medicaid program. Olmstead holds that qualified individuals with disabilities who are protected by the ADA have the right to receive publicly funded services in community-integrated treatment settings and that medically unnecessary institutionalization violates the ADA. But the Court had to wrestle with the extent to which the ADA requires state Medicaid programs to make deep and structural reforms in how long-term care services are organized, financed, and delivered...
August 2016: Journal of Health Politics, Policy and Law
https://www.readbyqxmd.com/read/27098366/measurement-of-visual-ability-in-children-with-cerebral-palsy-a%C3%A2-systematic-review
#11
REVIEW
Belinda Deramore Denver, Elspeth Froude, Peter Rosenbaum, Sarah Wilkes-Gillan, Christine Imms
AIM: To identify and evaluate measures of visual ability used with children with cerebral palsy (CP). METHOD: Eight databases were searched for measures of visual ability. Key selection criteria for measures were: use with children with CP; focus of visual ability measurement at the Activities and Participation domain of the International Classification of Functioning, Disability and Health (ICF). The Consensus-based Standards for the Selection of Measurement Instruments (COSMIN) Checklist was used to assess psychometric properties...
October 2016: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/26767564/the-importance-of-context-what-are-our-assumptions-about-childhood-disability
#12
EDITORIAL
Peter Rosenbaum
No abstract text is available yet for this article.
December 2015: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/26531668/financial-stress-among-parents-of-children-with-neurodevelopmental-disabilities-in-canada-the-role-of-complexity
#13
A Bogossian, D W Rothwell, L M Lach, D Nicholas, D Kohen, P Rosenbaum
No abstract text is available yet for this article.
December 2015: International Journal of Developmental Neuroscience
https://www.readbyqxmd.com/read/26442231/characteristics-of-patients-receiving-long-term-opioid-therapy-for-chronic-noncancer-pain-a-cross-sectional-survey-of-patients-attending-the-pain-management-centre-at-hamilton-general-hospital-hamilton-ontario
#14
Jason W Busse, Hamza Mahmood, Bilal Maqbool, Amna Maqbool, Ali Zahran, Adnan Alwosaibai, Eshaq Alshaqaq, Nav Persaud, Lynn Cooper, Angela Carol, Janice Sumpton, Erin McGinnis, Daniel Rosenbaum, Natalie Lidster, D Norman Buckley
BACKGROUND: Characteristics of patients receiving long-term opioid therapy (≥ 6 months) for chronic noncancer pain are poorly understood. We conducted a cross-sectional survey of this patient population to explore demographic variables, pain relief, functional improvement, adverse effects and impressions of an educational pamphlet on long-term opioid therapy. METHODS: We invited 260 adult patients presenting to the Pain Management Centre at the Hamilton General Hospital, Hamilton, Ontario, with chronic noncancer pain to complete a 20-item survey...
July 2015: CMAJ Open
https://www.readbyqxmd.com/read/26246787/pharmacological-approaches-to-the-challenge-of-treatment-resistant-depression
#15
REVIEW
Dawn F Ionescu, Jerrold F Rosenbaum, Jonathan E Alpert
Although monoaminergic antidepressants revolutionized the treatment of Major Depressive Disorder (MDD) over a half-century ago, approximately one third of depressed patients experience treatment-resistant depression (TRD). Such patients account for a disproportionately large burden of disease, as evidenced by increased disability, cost, human suffering, and suicide. This review addresses the definition, causes, evaluation, and treatment of unipolar TRD, as well as the major treatment strategies, including optimization, augmentation, combination, and switch therapies...
June 2015: Dialogues in Clinical Neuroscience
https://www.readbyqxmd.com/read/25970874/medicaid-benefit-designs-for-newly-eligible-adults-state-approaches
#16
Sara Rosenbaum, Devi Mehta, Mark Dorley, Carla Hurt, Sara Rothenberg, Nancy Lopez, Sara Ely
The Affordable Care Act gives states the option of providing less-generous Medicaid coverage to adults who become eligible through the law's expansion of the program. Based on a review of the benefit design choices made by states that had expanded Medicaid by the end of 2014, we find that states have chosen to offer more generous coverage than what is required under federal law, either narrowing or eliminating the distinction between coverage levels for newly eligible adults and those for traditional adult beneficiaries, such as pregnant women, parents and guardians, or beneficiaries with disabilities...
May 2015: Issue Brief of the Commonwealth Fund
https://www.readbyqxmd.com/read/25865031/knowledge-mobilization-to-spread-awareness-of-the-f-words-in-childhood-disability-lessons-from-a-family-researcher-partnership
#17
A Cross, P Rosenbaum, D Grahovac, D Kay, J W Gorter
BACKGROUND: In 2012, two CanChild researchers published an article in Child: Care, Health and Development titled 'The "F-words" in childhood disability: I swear this is how we should think!' Building on the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework, the article featured key strengths-based ICF themes (i.e. the 'F-words' - Function, Family, Fitness, Fun, Friends and Future). This paper reports on a knowledge mobilization initiative designed to spread awareness of the 'F-words' ideas...
November 2015: Child: Care, Health and Development
https://www.readbyqxmd.com/read/25728777/dominant-mutations-in-kat6a-cause-intellectual-disability-with-recognizable-syndromic-features
#18
MULTICENTER STUDY
Emma Tham, Anna Lindstrand, Avni Santani, Helena Malmgren, Addie Nesbitt, Holly A Dubbs, Elaine H Zackai, Michael J Parker, Francisca Millan, Kenneth Rosenbaum, Golder N Wilson, Ann Nordgren
Through a multi-center collaboration study, we here report six individuals from five unrelated families, with mutations in KAT6A/MOZ detected by whole-exome sequencing. All five different de novo heterozygous truncating mutations were located in the C-terminal transactivation domain of KAT6A: NM_001099412.1: c.3116_3117 delCT, p.(Ser1039∗); c.3830_3831insTT, p.(Arg1278Serfs∗17); c.3879 dupA, p.(Glu1294Argfs∗19); c.4108G>T p.(Glu1370∗) and c.4292 dupT, p.(Leu1431Phefs∗8). An additional subject with a 0...
March 5, 2015: American Journal of Human Genetics
https://www.readbyqxmd.com/read/25363768/the-contribution-of-de-novo-coding-mutations-to-autism-spectrum-disorder
#19
Ivan Iossifov, Brian J O'Roak, Stephan J Sanders, Michael Ronemus, Niklas Krumm, Dan Levy, Holly A Stessman, Kali T Witherspoon, Laura Vives, Karynne E Patterson, Joshua D Smith, Bryan Paeper, Deborah A Nickerson, Jeanselle Dea, Shan Dong, Luis E Gonzalez, Jeffrey D Mandell, Shrikant M Mane, Michael T Murtha, Catherine A Sullivan, Michael F Walker, Zainulabedin Waqar, Liping Wei, A Jeremy Willsey, Boris Yamrom, Yoon-ha Lee, Ewa Grabowska, Ertugrul Dalkic, Zihua Wang, Steven Marks, Peter Andrews, Anthony Leotta, Jude Kendall, Inessa Hakker, Julie Rosenbaum, Beicong Ma, Linda Rodgers, Jennifer Troge, Giuseppe Narzisi, Seungtai Yoon, Michael C Schatz, Kenny Ye, W Richard McCombie, Jay Shendure, Evan E Eichler, Matthew W State, Michael Wigler
Whole exome sequencing has proven to be a powerful tool for understanding the genetic architecture of human disease. Here we apply it to more than 2,500 simplex families, each having a child with an autistic spectrum disorder. By comparing affected to unaffected siblings, we show that 13% of de novo missense mutations and 43% of de novo likely gene-disrupting (LGD) mutations contribute to 12% and 9% of diagnoses, respectively. Including copy number variants, coding de novo mutations contribute to about 30% of all simplex and 45% of female diagnoses...
November 13, 2014: Nature
https://www.readbyqxmd.com/read/24810083/classification-in-childhood-disability-focusing-on-function-in-the-21st-century
#20
Peter Rosenbaum, Ann-Christin Eliasson, Mary Jo Cooley Hidecker, Robert J Palisano
Classification systems in health care are usually based on current understanding of the condition. They are often derived empirically and adopted applying sound principles of measurement science to assess whether they are reliable (consistent) and valid (true) for the purposes to which they are applied. In the past 15 years, the authors have developed and validated classification systems for specific aspects of everyday function in people with cerebral palsy--gross motor function, manual abilities, and communicative function...
August 2014: Journal of Child Neurology
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