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https://www.readbyqxmd.com/read/28526761/a-retrospective-chart-review-of-the-features-of-pten-hamartoma-tumour-syndrome-in-children
#1
Emily Hansen-Kiss, Sarah Beinkampen, Brent Adler, Thomas Frazier, Thomas Prior, Steven Erdman, Charis Eng, Gail Herman
OBJECTIVE: It is recognised that 5% - 10 % of children with macrocephaly and autism spectrum disorder (ASD) and/or intellectual disability (ID) have a heterozygous pathogenic mutation in the PTEN tumour suppressor gene that is associated with PTEN hamartoma tumour syndrome. However, the clinical features and course in children with a pathogenic PTEN mutation are unclear and have not been well documented. STUDY OBJECTIVES: We undertook a retrospective chart review of children (< 18  years) with pathogenic PTEN mutations to ascertain clinical findings, clinical course and possible outcomes...
May 19, 2017: Journal of Medical Genetics
https://www.readbyqxmd.com/read/28523474/perceptions-of-successful-aging-among-older-adults-in-bangladesh-an-exploratory-study
#2
Iftekhar Amin
To analyze older adults' definitions of successful aging in Bangladesh. The purposively selected study sample comprised twelve participants who were aged over 60. Interviews using in-depth semi-structured questionnaires were conducted based on participants' chosen mode, either face-to-face, or by phone. Findings of this study support that successful aging is multidimensional - that is - for Bangladeshis successful aging encompasses dimensions such as adaptation to an aging body, financial security, family and intergenerational care, and social participation...
May 18, 2017: Journal of Cross-cultural Gerontology
https://www.readbyqxmd.com/read/28514473/effective-team-practices-interprofessional-contributions-to-communication-issues-with-a-parent-s-perspective
#3
Karena Cooper-Duffy, Kerri Eaker
Purpose: This clinical focus article contains a detailed description of how to build effective teams that use interprofessional collaborative practice (IPCP) with special-education professionals, speech-language pathologists, and families of children with severe disabilities. Method: This clinical focus article provides information on using the essential elements of team building and IPCP to provide quality care to families who have children with severe disabilities...
May 17, 2017: American Journal of Speech-language Pathology
https://www.readbyqxmd.com/read/28506122/examining-transitions-from-youth-to-adult-services-for-young-persons-with-autism
#4
Mathew T Milen, David B Nicholas
Autism Spectrum Disorder (ASD) presents pervasive challenges for individuals throughout their lifetime. Although some financial, community, and individual supports are available for children, there are fewer resources available for adults with ASD, their families, and/or caregivers. It is important to understand the multidimensional shifts associated with the transition from adolescence to adulthood for individuals with ASD. METHODS: To better understand the transitional process, a qualitative study comprised 11 semi-structured interviews with individuals with ASD and their families...
May 16, 2017: Social Work in Health Care
https://www.readbyqxmd.com/read/28504510/-guide-for-monitoring-children-s-development-in-pediatric-practice
#5
(no author information available yet)
The pediatrician is the best-informed professional to whom many families look to be the expert, not only on childhood illnesses but also on development. Early identification, diagnosis and monitoring of these patients are a real challenge for physicians who serve children. This guide provides recommendations for development monitoring, evaluation, diagnosis and follow up of patients with developmental delays and disabilities.
June 1, 2017: Archivos Argentinos de Pediatría
https://www.readbyqxmd.com/read/28497613/effectiveness-of-a-nurse-led-preadmission-intervention-for-parents-of-children-with-profound-multiple-disabilities-undergoing-hip-joint-surgery-a-quasi-experimental-pilot-study
#6
Brigitte Seliner, Beatrice Latal, Rebecca Spirig
PURPOSE: The aim of this study was to assess the effectiveness of a family-centered care (FCC) intervention provided by an advanced practice nurse (APN) for parents of children with profound disabilities undergoing surgery. DESIGN AND METHODS: In a quasi-experimental design, we used the MPOC-20 to assess satisfaction with FCC and interviews to identify potential mechanisms for improving satisfaction. RESULTS: There was a positive effect on the MPOC-20 domain "general information," albeit with a small effect size (Cohen's d = 0...
May 11, 2017: Journal for Specialists in Pediatric Nursing: JSPN
https://www.readbyqxmd.com/read/28492577/-neuropsychological-profiles-personality-features-and-familial-relational-patterns-in-parents-of-children-with-autism-spectrum-disorders
#7
Marinella Zingale, Santina Città, Paola Occhipinti, Flaviana Elia, Serafino Buono
INTRODUCTION: The study of neuropsychological profiles and personality features of parents of persons with Autism Spectrum Disorder (ASD) has highlighted specific traits that turned out to be useful for diagnostic purposes. AIM AND METHODS: In our study, psychodiagnostic measures have been used to investigate cognitive profiles, personality features and familial relational patters in a group of parents of children with ASD associated to Intellectual Disability (ID)...
March 2017: Rivista di Psichiatria
https://www.readbyqxmd.com/read/28492518/environmental-barriers-to-participation-of-preschool-children-with-and-without-physical-disabilities
#8
Lin-Ju Kang, Ming-Chieh Hsieh, Hua-Fang Liao, Ai-Wen Hwang
Environment plays a vital role in affecting participation of young children in home, school, and community. Knowledge of environmental barriers helps to develop solutions or strategies that enable participation. The study compared the environmental barriers perceived by parents of preschool children with physical disabilities (PD, n = 142) and with typical development (TD, n = 192) in Taiwan. Parents identified environmental barriers by structured interview using the Chinese version of the Child and Adolescent Scale of Environment (CASE-C)...
May 11, 2017: International Journal of Environmental Research and Public Health
https://www.readbyqxmd.com/read/28490461/quality-of-life-among-children-with-spina-bifida-in-uganda
#9
Helen J Sims-Williams, Hugh P Sims-Williams, Edith Mbabazi Kabachelor, Benjamin C Warf
BACKGROUND: Children surviving after spina bifida repair often have significant disability, the consequences of which may be more profound in low-income countries. The aim of this cross-sectional study was to measure quality of life (QOL) reported by children with spina bifida in Uganda, and to define factors associated with QOL. METHODS: QOL was measured using both the Health Utilities Index (HUI3) Tool and a visual analogue scale (VAS) marked from 0 to 10. In keeping with the WHO definition of QOL, further analysis was conducted using subjective QOL scores (using the VAS)...
May 10, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/28485850/child-and-parent-reported-quality-of-life-trajectories-in-children-with-epilepsy-a-prospective-cohort-study
#10
Mark A Ferro, Lisa Avery, Nora Fayed, David L Streiner, Charles E Cunningham, Michael H Boyle, Lucyna Lach, Gina Glidden, Peter L Rosenbaum, Gabriel M Ronen
OBJECTIVE: To describe the developmental trajectories of quality of life (QoL) in a large cohort of children with epilepsy, and to assess the relative contribution of clinical, psychosocial, and sociodemographic variables on QoL trajectories. METHODS: Five assessments during a 28-month prospective cohort study were used to model trajectories of QoL. Participants were recruited with their parents from six Canadian tertiary centers. A convenience sample of 506 children aged 8-14 years with epilepsy and without intellectual disability or autism spectrum disorder were enrolled...
May 9, 2017: Epilepsia
https://www.readbyqxmd.com/read/28484315/hard-ways-towards-adulthood-the-transition-phase-in-young-people-with-myotonic-dystrophy
#11
REVIEW
Sigrid Baldanzi, Giulia Ricci, Costanza Simoncini, Mirna Cosci O Di Coscio, Gabriele Siciliano
Myotonic dystrophy type 1 (DM1), also called Steinert's disease, is a genetic multisystem disorder that has raised, in the last years, high interest because of the high variable clinical spectrum and related disability. Children with myotonic dystrophy are affected by behavioural problems and intellectual disability, finally impacting on their degree of engagement in family, work and social activities. The transition phase, representing the process of moving from adolescence to adulthood, can be severely affected by growing up with a neuromuscular disorder, with significant impact on patient's and families' quality of life...
December 2016: Acta Myologica: Myopathies and Cardiomyopathies: Official Journal of the Mediterranean Society of Myology
https://www.readbyqxmd.com/read/28471395/after-the-visit-an-overview-of-government-and-community-programs-supporting-children-with-medical-complexity
#12
REVIEW
Kaitlyn B Olson
The optimal care of children with medical complexity (CMC) requires involvement from a network of professionals that includes physicians, nurses, ancillary service providers, and educators. Pediatric health care providers typically have early and frequent contact with the families of CMC. Therefore, they are in a unique position to connect families to developmental, educational, and psychosocial supports. This article reviews important government and community programs that support CMC living in the United States...
May 4, 2017: Children
https://www.readbyqxmd.com/read/28466627/predictors-of-parents-adherence-to-home-exercise-programs-for-children-with-developmental-disabilities-regarding-both-exercise-frequency-and-duration-a-survey-design
#13
Francesc Medina-Mirapeix, Carmen Lillo-Navarro, Joaquina Montilla-Herrador, Mariano Gacto-Sanchez, María Á Franco-Sierra, Pilar Escolar-Reina
BACKGROUND: Many families have problems adhering to home exercise programs (HEP) for children with developmental disabilities. However, parental participation in HEP is known to have a positive effect on child-related outcome variables, as well as on parental functioning. AIM: This study examined whether the different behaviours of health professionals, and the behaviour and social characteristics of parents determine rates of parental adherence to both the frequency per week, and duration per session, of HEP for children with developmental disabilities attending paediatric services in early intervention centres...
May 2, 2017: European Journal of Physical and Rehabilitation Medicine
https://www.readbyqxmd.com/read/28462588/mental-disorders-in-australian-4-to-17-year-olds-parent-reported-need-for-help
#14
Sarah E Johnson, David Lawrence, Michael Sawyer, Stephen R Zubrick
OBJECTIVE: To describe the extent to which parents report that 4- to 17-year-olds with symptoms meeting Diagnostic and Statistical Manual of Mental Disorders, 4th edition criteria for mental disorders need help, the types of help needed, the extent to which this need is being met and factors associated with a need for help. METHOD: During 2013-2014, a national household survey of the mental health of Australia's young people (Young Minds Matter) was conducted, involving 6310 parents (and carers) of 4- to 17-year-olds...
April 1, 2017: Australian and New Zealand Journal of Psychiatry
https://www.readbyqxmd.com/read/28459120/do-adolescents-with-long-term-illnesses-and-disabilities-have-increased-risks-of-sports-related-injuries
#15
Kwok W Ng, Jorma Tynjälä, Pauli Rintala, Sami Kokko, Lasse Kannas
BACKGROUND: The aim of this study is to examine the rates of sports related injuries in adolescents based on the severity of their long-term illnesses or disabilities (LTID). Few injury prevention strategies in sports and health promotion have explored disaggregation by disability. METHODS: Data obtained from the 2014 Finnish Health Behaviour in School-aged Children survey (n = 3716, mean age = 14.8, SD = 1.03) were grouped into adolescents with and without LTID...
December 2017: Injury Epidemiology
https://www.readbyqxmd.com/read/28458548/metabolic-screening-and-its-impact-in-children-with-nonsyndromic-intellectual-disability
#16
Yasser F Ali, Salah El-Morshedy, Riad M Elsayed, Amr M El-Sherbini, Saber Am El-Sayed, Nasser Ismail A Abdelrahman, Abdulbasit Abdulhalim Imam
OBJECTIVE: The objective of this study was to analyze the value of routine metabolic screening tests in children with an intellectual disability (ID) and its impact on improving their outcome and quality of life through appropriate intervention and treatment. PATIENTS AND METHODS: This cross-sectional study was conducted in the Pediatric Neurology Clinic, Al Khafji Joint Operations Hospital, Kingdom of Saudi Arabia. A total of 150 children with nonsyndromic ID (66% males) in the age range of 5-17 years were compared with 50 apparently healthy age- and sex-matched controls...
2017: Neuropsychiatric Disease and Treatment
https://www.readbyqxmd.com/read/28456886/mutations-in-gmppb-presenting-with-pseudometabolic-myopathy
#17
Chiara Panicucci, Chiara Fiorillo, Francesca Moro, Guja Astrea, Giacomo Brisca, Federica Trucco, Marina Pedemonte, Paola Lanteri, Lucia Sciarretta, Carlo Minetti, Filippo M Santorelli, Claudio Bruno
Mutations in the guanosine diphosphate mannose (GDP-mannose) pyrophosphorylase B (GMPPB) gene encoding a key enzyme of the glycosylation pathway have been described in families with congenital (CMD) and limb girdle (LGMD) muscular dystrophy with reduced alpha-dystroglycan (α-DG) at muscle biopsy.Patients typically display a combined phenotype of muscular dystrophy, brain malformations, and generalized epilepsy. However, a wide spectrum of clinical severity has been described ranging from classical CMD presentation to children with mild, yet progressive LGMD with or without intellectual disability...
April 30, 2017: JIMD Reports
https://www.readbyqxmd.com/read/28449587/-the-dots-just-don-t-join-up-understanding-the-support-needs-of-families-of-children-on-the-autism-spectrum
#18
James Galpin, Penny Barratt, Edward Ashcroft, Scot Greathead, Lorcan Kenny, Elizabeth Pellicano
Much research has documented the elevated levels of stress experienced by families of autistic children. Yet remarkably little research has examined the types of support that these families perceive to be beneficial to their lives. This study, co-produced by researchers and school-based professionals, sought to establish these families' support needs from their own perspectives. In total, 139 parents of autistic children with additional intellectual disabilities and limited spoken communication, all attending an inner-city London school, participated in an initial survey examining parental wellbeing, self-efficacy and the extent to which they felt supported...
April 1, 2017: Autism: the International Journal of Research and Practice
https://www.readbyqxmd.com/read/28432185/exogenous-cushing-s-syndrome-due-to-a-chinese-herbalist-s-prescription-of-ointment-containing-dexamethasone
#19
Viola Franke, Winnie Francien Scholtens, Ines Alexandra von Rosenstiel, Marie Jose Walenkamp
Eczema in children is a chronic disabling condition. The impact of this condition on the lives of families is often underestimated by conventional physicians. As a consequence parents may investigate complementary treatment options. Close monitoring by a paediatrician is essential, considering that a variety of adverse effects can occur during the use of complementary treatment. We present a 5-year-old girl with eczema. She visited a Chinese herbalist who prescribed an ointment. The parents noticed that the eczema resolved fast, itching decreased and she was finally sleeping well...
April 20, 2017: BMJ Case Reports
https://www.readbyqxmd.com/read/28423145/brief-behavioral-therapy-for-pediatric-anxiety-and-depression-in-primary-care-a-randomized-clinical-trial
#20
V Robin Weersing, David A Brent, Michelle S Rozenman, Araceli Gonzalez, Megan Jeffreys, John F Dickerson, Frances L Lynch, Giovanna Porta, Satish Iyengar
Importance: Anxiety and depression affect 30% of youth but are markedly undertreated compared with other mental disorders, especially in Hispanic populations. Objective: To examine whether a pediatrics-based behavioral intervention targeting anxiety and depression improves clinical outcome compared with referral to outpatient community mental health care. Design, Setting, and Participants: This 2-center randomized clinical trial with masked outcome assessment conducted between brief behavioral therapy (BBT) and assisted referral to care (ARC) studied 185 youths (aged 8...
April 19, 2017: JAMA Psychiatry
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