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1.
Sleep Med ; 119: 222-228, 2024 Apr 20.
Artigo em Inglês | MEDLINE | ID: mdl-38704869

RESUMO

Though it is widely prescribed for improving sleep of children with autism and other neurogenetic disorders, there is a need for practical guidance to clinicians on the use of melatonin for managing insomnia in this population. Because data were either lacking or inconclusive, a task force was established by the International Pediatric Sleep Association (IPSA) to examine the literature based on clinical trials from 2012 onwards. A summary of evidence pertaining to melatonin's utility and potential side effects, practice-related caveats, and insights for use are published herewith.

2.
Artigo em Inglês | MEDLINE | ID: mdl-37701170

RESUMO

Introduction: Patients with either Idiopathic Hypersomnia or Narcolepsy demonstrate excessive daytime somnolence (EDS) with resultant inattention mimicking Attention Deficit Hyperactivity Disorder (ADHD). Patients with ADHD also often express sleep problems including EDS. Thus, patients with ADHD and patients with idiopathic hypersomnia or narcolepsy may share inattention and daytime drowsiness as common features. However, it is not known whether EDS patients with idiopathic hypersomnia or narcolepsy also have increased movement (hyperactivity) like ADHD patients, the determination of which is the purpose of this study. Methods: We studied 12 patients (7 Narcolepsy type 2 and 5 Idiopathic Hypersomnia) with EDS as shown by Multiple Sleep Latency Test which served as the gold standard for entry into the study. Twelve subjects without symptoms of EDS served as the control group. None of the participants had a previous history of ADHD. Each participant underwent a one-hour session laying at 45 degrees with surveys about the need to move and actigraphy as an objective measure of movement. Results: Sleep-disordered patients with EDS reported more symptoms of inattention and hyperactivity on the ADHD Self-Report Scale. At each of the time points patients with EDS had a clear trend to express the need to move more than controls on the Suggested Immobilization Test (SIT). For the total 60 minutes, a large effect size for the need to move during the SIT test was found between patients and controls (Cohen's d = 0.61, p=0.01). Patients with EDS did not express a need to move more to combat drowsiness than controls, nor did actigraphy show any difference in objective movement between patients and controls during the SIT. Conclusion: Patients with EDS express inattention and a need to move more than controls. However, hyperactivity was not verified by objective measurement, nor did the EDS patients express a need to move to combat drowsiness more than controls. Thus, a hypothesis to be further tested, is whether narcolepsy and idiopathic hypersomnia may be more a model of the inattentive form of ADHD rather than the combined or inattentive/hyperactive form of ADHD. Further studies are needed to explore the relationship between EDS and hyperactivity.

4.
Front Psychiatry ; 14: 857717, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37020729

RESUMO

"Poor sleep health" (PSH), defined as reduced amount of sleep and non-restorative sleep, affects cognitive, social and emotional development. Evidence suggests an association of sleep deprivation and mental health problems; however, there are no universal concepts allowing a first-tier screening of PSH at a community level. The focus of this narrative review is to highlight the cultural context of the current medicalized approach to PSH and to suggest social ecological strategies informing new and holistic community-based screening concepts. We present two conceptual screening frameworks; a "medical" and a merged "social emotional wellbeing framework" and combine them utilizing the concept of "ecologies." The first framework proposes the incorporation of "sleep" in the interpretation of "vigilance" and "inappropriate" labeled behaviors. In the first framework, we provide a logic model for screening the myriad of presentations and possible root causes of sleep disturbances as a tool to assess daytime behaviors in context with PSH. In the second framework, we provide evidence that informs screening for "social emotional wellbeing" in the context of predictive factors, perpetuating factors and predispositions through different cultural perspectives. The distinct goals of both frameworks are to overcome training-biased unidirectional thinking and a priori medicalization of challenging, disruptive and/or disobedient behaviors. The latter has been explicitly informed by the critical discourse on colonization and its consequences, spearheaded by First Nations. Our "transcultural, transdisciplinary and transdiagnostic screening framework" may serve as a starting point from which adaptations of medical models could be developed to suit the purposes of holistic screening, diagnosis, and treatment of complex childhood presentations in different cultural contexts.

5.
Front Psychiatry ; 13: 878356, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36440388

RESUMO

Introduction: Motivated by challenges faced in outpatient sleep services for mental health and neurodevelopmental disorders (MHNDD) during the COVID-19 clinical shutdown, a pan-Canadian/international working group of clinicians and social scientists developed a concept for capturing challenging sleep and wake behaviours already at the referral stage in the community setting. Methods: In a quality improvement/quality assurance (QIQA) project, a visual logic model was the framework for identifying the multiple causes and possible interventions for sleep disturbances. Intake forms informed clinicians about situational experiences, goals/concerns, in addition to the questions from the Sleep Disturbances Scale for Children (SDSC), the ADHD Rating Scale-IV and medication history. Descriptive statistics were used to describe the sample. Results: 66% of the pilot study patients (n = 41) scored in the SDSC red domains (highest scoring) with highest sub-scores for insomnia (falling asleep 73%; staying asleep: 51%) and daytime somnolence (27%). A total of 90% of patients were taking at least one medication; 59% sleep initiation/sleep medications, 41% in combination with further non-stimulant medications, 9% with stimulants, 27% with antidepressants and 18% with antipsychotics. Polypharmacy was observed in 62% of all patients and in 73% of the ones medicated for sleep disturbances. Qualitative information supported individualisation of assessments. Conclusion: Our intake process enabled a comprehensive understanding of patients' sleep and wake profiles prior to assessment, at the referral stage. The high prevalence of insomnia in patients, combined with polypharmacy, requires special attention in the triaging process at the community level.

6.
Front Psychiatry ; 13: 1003019, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36226108

RESUMO

In behavioral medicine, sleep disorders, insomnia in particular, may be considered comorbidities and precipitating factors to intellectual or developmental disabilities (IDD). Nevertheless, sleep alterations have often been neglected in favor of daytime features and symptoms, albeit simple behavioral nighttime observations may disclose hypermotor features that characterize restless sleep. The root of most hypermotor restlessness is linked to central iron deficiency. The latter is often exacerbated by vitamin D deficiency (VDD), which interferes with both dopaminergic and serotonergic mechanisms. In this way, an imbalance affecting daytime behavior and mood is created. Several sleep-related motor disorders such as bruxism, periodic and aperiodic leg movements, Restless Legs Syndrome (RLS), and Restless Sleep Disorder (RSD) are commonly seen in Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorders (ASD). However, they are rarely diagnosed and often overlooked in affected children and adolescents. As a result, not only are these disorders not adequately addressed therapeutically, but their symptoms may be worsened by the side-effects of drugs used to contain disruptive daytime behavior, such as antipsychotics and antidepressants. In children with IDDs, obesity, inactivity and metabolic effects of antipsychotics often lead to Sleep Disordered Breathing (SDB), which is currently understood as an inflammatory state leading to "hyperactive" lethargy and further alterations of the hypoxic chain and vitamin D levels. Endorsing simple routine blood tests, including inflammatory markers such as C-reactive protein, ferritin, transferrin, and vitamin D levels, may favorably complement caregiver observations and ambulatory sleep recordings, leading to a sleep disorder diagnosis and consequent therapy. In fact, the treatment of SDB, RLS, and RSD has been copiously demonstrated to favorably impact vigilance, behavior, social competence, and academic skills in healthy and, to a greater extent, in IDD children. Thus, consulting and deliberating the root causes of functional and categorical diagnoses within a clinical framework may engender a more precise diagnosis and further benefit pediatric daytime and nighttime management of hyperactive behaviors.

7.
PLoS One ; 17(9): e0273819, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36173945

RESUMO

BACKGROUND: A wealth of human and experimental studies document a causal and aggravating role of iron deficiency in neurodevelopmental disorders. While pre-, peri-, and early postnatal iron deficiency sets the stage for the risk of developing neurodevelopmental disorders, iron deficiency acquired at later ages aggravates pre-existing neurodevelopmental disorders. Yet, the association of iron deficiency and neurodevelopmental disorders in childhood and adolescence has not yet been explored comprehensively. In this scoping review, we investigate 1) the association of iron deficiency in children and adolescents with the most frequent neurodevelopmental disorders, ADHD, ASD, and FASD, and 2) whether iron supplementation improves outcomes in these disorders. METHOD: Scoping review of studies published between 1994 and 2021 using "iron deficiency / iron deficiency anemia" AND "ADHD" OR "autism" OR "FASD" in four biomedical databases. The main inclusion criterion was that articles needed to have quantitative determination of iron status at any postnatal age with primary iron markers such as serum ferritin being reported in association with ADHD, ASD, or FASD. RESULTS: For ADHD, 22/30 studies and 4/4 systematic reviews showed an association of ADHD occurrence or severity with iron deficiency; 6/6 treatment studies including 2 randomized controlled trials demonstrated positive effects of iron supplementation. For ASD, 3/6 studies showed an association with iron deficiency, while 3/6 and 1/1 systematic literature review did not; 4 studies showed a variety of prevalence rates of iron deficiency in ASD populations; 1 randomized controlled trial found no positive effect of iron supplementation on behavioural symptoms of ASD. For FASD, 2/2 studies showed an association of iron deficiency with growth retardation in infants and children with prenatal alcohol exposure. CONCLUSION: Evidence in favor of screening for iron deficiency and using iron supplementation for pediatric neurodevelopmental disorders comes primarily from ADHD studies and needs to be further investigated for ASD and FASD. Further analysis of study methodologies employed and populations investigated is needed to compare studies against each other and further substantiate the evidence created.


Assuntos
Anemia Ferropriva , Deficiências de Ferro , Transtornos do Neurodesenvolvimento , Efeitos Tardios da Exposição Pré-Natal , Adolescente , Anemia Ferropriva/complicações , Anemia Ferropriva/epidemiologia , Criança , Feminino , Ferritinas , Humanos , Lactente , Ferro , Transtornos do Neurodesenvolvimento/epidemiologia , Gravidez , Ensaios Clínicos Controlados Aleatórios como Assunto
8.
Front Psychiatry ; 13: 851490, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35873258

RESUMO

Background: Terms currently used to describe the so-called challenging and disruptive behaviors (CBDs) of children with intellectual disabilities (ID) have different connotations depending on guiding contextual frameworks, such as academic and cultural settings in which they are used. A non-judgmental approach, which does not attempt to establish existing categorical diagnoses, but which describes in a neutral way, is missing in the literature. Therefore, we tried to describe CDBs in youth with ID in an explorative study. Methods: Interviews with families investigated the CDBs of five youth with Down syndrome. At home, families tracked youth's sleep/wake behaviors and physical activity. Youth were observed in a summer school classroom. The collected information and suggested explanatory models for observed CDBs were reviewed with the families. Results: We grouped CDBs as challenging, if they were considered to be reactive or triggered, or unspecified, if no such explanatory model was available. A third category was created for light-hearted CDBs: goofy, acknowledging the right to laugh together with peers. We found some relationships between sleep, physical activity, and CDBs and developed an explorative approach, supporting a child-centered perspective on CDBs. Conclusion: The controversial discussions on terminology and management of CDBs in the literature demonstrate the need for a non-judgmental approach. Such an explorative approach, allowing non-professionals to not label, has been missing. The fact that, up to now, the light-hearted behaviors of an individual with ID have not been integrated in commonly-used behavioral checklists as their natural right, proves our concept and indicates that a paradigm change from judgment-based to exploratory-driven approaches is needed.

9.
Sleep Med Rev ; 63: 101613, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35313258

RESUMO

Sleep disturbances are highly prevalent among children with ADHD. Yet, diagnostic and treatment regimens are primarily focused on daytime symptomatology. The goals of this scoping review are to 1) identify interventional ADHD RCTs that have used sleep as an outcome measure, 2) describe and assess the validity of tools utilized to measure sleep-specific outcomes. 40/71 RCTs used sleep as a primary outcome. Actigraphy (n = 18) and sleep log/diary (n = 16) were the most common tools to measure sleep, followed by Children's Sleep Habits Questionnaire (n = 13), and polysomnography (n = 10). Sleep was a secondary outcome in 31 RCTs. Polysomnography and actigraphy used a heterogeneous spectrum of sleep-related variables and technical algorithms, respectively. 19/23 sleep questionnaires were validated covering a spectrum of sleep-related domains. Despite the intrinsic nature of sleep disturbances in ADHD, the number of RCTs measuring sleep-specific outcomes is limited and tools to measure outcomes are not standardized. Given the potential adverse effects of ADHD medications on sleep, sleep should be included as a core outcome measure in future clinical trials.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Transtornos do Sono-Vigília , Transtorno do Deficit de Atenção com Hiperatividade/complicações , Criança , Humanos , Avaliação de Resultados em Cuidados de Saúde , Ensaios Clínicos Controlados Aleatórios como Assunto , Sono , Transtornos do Sono-Vigília/complicações
10.
J Psychiatr Res ; 131: 144-151, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32971358

RESUMO

BACKGROUND: Behavioral observations support clinical in-depth phenotyping but phenotyping and pattern recognition are affected by training background. As Attention Deficit Hyperactivity Disorder, Restless Legs syndrome/Willis Ekbom disease and medication induced activation syndromes (including increased irritability and/or akathisia), present with hyperactive-behaviors with hyper-arousability and/or hypermotor-restlessness (H-behaviors), we first developed a non-interpretative, neutral pictogram-guided phenotyping language (PG-PL) for describing body-segment movements during sitting. METHODOLOGY & RESULTS: The PG-PL was applied for annotating 12 1-min sitting-videos (inter-observer agreements >85%->97%) and these manual annotations were used as a ground truth to develop an automated algorithm using OpenPose, which locates skeletal landmarks in 2D video. We evaluated the algorithm's performance against the ground truth by computing the area under the receiver operator curve (>0.79 for the legs, arms, and feet, but 0.65 for the head). While our pixel displacement algorithm performed well for the legs, arms, and feet, it predicted head motion less well, indicating the need for further investigations. CONCLUSION: This first automated analysis algorithm allows to start the discussion about distinct phenotypical characteristics of H-behaviors during structured behavioral observations and may support differential diagnostic considerations via in-depth phenotyping of sitting behaviors and, in consequence, of better treatment concepts.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Síndrome das Pernas Inquietas , Algoritmos , Humanos , Aprendizado de Máquina , Movimento
11.
Sleep Med Rev ; 51: 101274, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32224451

RESUMO

Iron deficiency (ID) is associated with sleep disorders, but standardized assessment of iron status in the diagnostic work-up and iron supplementation as treatment have not been considered in clinical practice. We investigated associations of ID with type and severity of sleep disorders and whether iron supplementation improves sleep-related symptoms. In 2017, we conducted a scoping review for the period 1972-2016 using the terms "iron deficiency anemia" and "sleep" on biomedical database search engines, and in 2019, we updated our review with an ad-hoc search. Among the 93 articles meeting our inclusion criteria, 74/93 studies investigated restless legs syndrome (RLS), 8/93 periodic limb movements in sleep (PLMs), 3/93 sleep disordered breathing (SDB), 6/93 general sleep disturbances (GSD), and 2/93 attention-deficit/ hyperactivity disorder related sleep disorders (ADHD-SDs). A statistically supported positive association with ID was found in 22/42 RLS, 3/8 PLMs, 1/2 SDB, 3/4 GSD, and 1/2 ADHD-SDs association studies. The ad-hoc literature search revealed eight additional association studies with a statistically supported positive association in 2/5 RLS, 1/1 SDB, 1/1 ADHD-SDs, and 1/1 restless sleep disorder (RSD) studies. Iron supplementation was beneficial in 29/30 RLS (including five randomized controlled trials [RCTs]), 1/1 SDB, and 2/2 GSD treatment studies. Iron supplementation was also beneficial in 2/2 RLS (including two RCTs), 1/1 GSD (RCT), and 1/1 RSD studies identified in the ad-hoc search. In pediatric populations, 1/1 RLS, 1/1 SDB, 2/5 PLMs, 2/3 GSD and 1/2 ADHD-SDs studies found positive associations, and 6/6 RLS and 2/2 GSD studies demonstrated a benefit with iron supplementation. In conclusion, iron investigation and supplementation should be considered in patients presenting with sleep disorders. To investigate the role of ID in sleep in the future, a harmonization of study designs, including outcome measures and standardized iron and inflammation status is necessary.


Assuntos
Anemia Ferropriva/diagnóstico , Anemia Ferropriva/epidemiologia , Anemia Ferropriva/terapia , Síndrome das Pernas Inquietas , Síndromes da Apneia do Sono , Humanos , Síndrome das Pernas Inquietas/complicações , Síndrome das Pernas Inquietas/epidemiologia , Síndromes da Apneia do Sono/complicações , Síndromes da Apneia do Sono/epidemiologia
12.
Sleep Med ; 54: 101-112, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30530254

RESUMO

INTRODUCTION: Clinical research and studies using animal models have revealed a complex and relatively under-explored interaction between prenatal alcohol exposure (PAE) and alterations in sleep-wake behaviors. OBJECTIVES: To utilize a structured naturalistic observation-based methodology, consisting of descriptive elements, to provide insight into possible links between altered sleep and disruptive daytime presentations in children and adolescents with fetal alcohol spectrum disorder (FASD). To apply a similar structured behavioral observation protocol in a PAE animal model to compare outcomes from the experimental and clinical studies utilizing naturalistic observational methodology. METHODS: Forty pediatric patients with FASD (1.8-17.5 yrs, median age 9.4 yrs) and chronic sleep problems were assessed. In the PAE animal model, male offspring from PAE, Pair-Fed (PF), and ad libitum-fed Control (C) groups (n = 8/group) were assessed in the juvenile/preadolescent (23-25 days of age) and adolescent/pubertal (35-36 days of age) periods. RESULTS: In the clinical setting, we found that 95% of children with FASD showed disruptive or externalizing behaviors, 73% showed internalizing behaviors, 93% had circadian rhythm sleep disorders, all had chronic insomnia, and 85% had restless sleep, often with tossing/turning/kicking movements indicative of non-restorative sleep with hypermotor events. In the daytime, individuals showed excessive daytime sleepiness as well as hyperactive/hyperkinetic behaviors, an urge-to-move, and involuntary movements suggestive of hyperarousability. Alterations in sleep/wake behaviors in the PAE animal model paralleled the clinical data in many aspects, demonstrating greater sleep latencies, less total time asleep, more total time awake and longer awake bouts, more position changes, more time in transition, and longer transition bouts in PAE compared to PF and/or control animals. CONCLUSIONS: Thus, our findings provide support for the power and validity of naturalistic observational paradigms in revealing dysregulated sleep-wake behaviors and their association and/or exacerbating relationship with day and nighttime behavioral problems, such as disruptive behaviors, externalizing and internalizing disorders, and daytime sleepiness.


Assuntos
Modelos Animais de Doenças , Transtornos do Espectro Alcoólico Fetal/fisiopatologia , Efeitos Tardios da Exposição Pré-Natal , Transtornos do Sono-Vigília/fisiopatologia , Animais , Criança , Feminino , Humanos , Masculino , Gravidez , Ratos , Estresse Psicológico/psicologia , Gravação em Vídeo
13.
CNS Neurosci Ther ; 22(11): 894-905, 2016 11.
Artigo em Inglês | MEDLINE | ID: mdl-27292821

RESUMO

BACKGROUND: Willis-Ekbom disease/restless legs syndrome (WED/RLS) seems to be a frequent cause of intractable chronic insomnia (ICI) but is under-recognized in children/adolescents with neurodevelopmental conditions (NDCs), as many patients do not have the ability to express the underlying "urge-to-move". In light of this, we aim to develop a protocol for behavioral observations supporting the diagnosis of WED/RLS. METHODS: We investigated 26 pediatric patients (age 1-16 years, median 8) with NDCs, ICI and evidence of familial WED/RLS employing (1) "emplotted narratives" for description of the various "urge-to-move" presentations and (2) self-description and "behavioral observations" during a "suggested clinical immobilization test" (SCIT). RESULTS: Parental narratives reflected typical WED/RLS-related "urge-to-move" symptoms during day-, bed-, and nighttime in all patients. Fifteen out of 26 patients could describe the "urge-to-move" during the SCIT. Ten out of 26 patients, unable to describe their symptoms due to cognitive disabilities, showed patterns of "relieving-movements" upon observation. Sensory processing abnormalities were reported in all patients, with tactile sensitivities (26/26) (including shifted pain threshold) as the most common sensory domain. CONCLUSION: "Emplotted narratives" and structured "behavioral observations" support recognition of familial WED/RLS associated movement patterns and provide a useful tool for the diagnosis of WED/RLS in children with NDCs in a clinical office setting.


Assuntos
Técnicas de Observação do Comportamento , Narração , Transtornos do Neurodesenvolvimento/complicações , Pais/psicologia , Síndrome das Pernas Inquietas/diagnóstico , Síndrome das Pernas Inquietas/etiologia , Adolescente , Criança , Pré-Escolar , Diagnóstico Diferencial , Feminino , Humanos , Lactente , Masculino , Transtornos do Neurodesenvolvimento/psicologia , Síndrome das Pernas Inquietas/psicologia , Estudos Retrospectivos , Sono/fisiologia , Vigília/fisiologia
14.
Front Psychiatry ; 6: 39, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25852578

RESUMO

INTRODUCTION: Advanced video technology is available for sleep-laboratories. However, low-cost equipment for screening in the home setting has not been identified and tested, nor has a methodology for analysis of video recordings been suggested. METHODS: We investigated different combinations of hardware/software for home-videosomnography (HVS) and established a process for qualitative and quantitative analysis of HVS-recordings. A case vignette (HVS analysis for a 5.5-year-old girl with major insomnia and several co-morbidities) demonstrates how methodological considerations were addressed and how HVS added value to clinical assessment. RESULTS: We suggest an "ideal set of hardware/software" that is reliable, affordable (∼$500) and portable (=2.8 kg) to conduct non-invasive HVS, which allows time-lapse analyses. The equipment consists of a net-book, a camera with infrared optics, and a video capture device. (1) We present an HVS-analysis protocol consisting of three steps of analysis at varying replay speeds: (a) basic overview and classification at 16× normal speed; (b) second viewing and detailed descriptions at 4-8× normal speed, and (c) viewing, listening, and in-depth descriptions at real-time speed. (2) We also present a custom software program that facilitates video analysis and note-taking (Annotator(©)), and Optical Flow software that automatically quantifies movement for internal quality control of the HVS-recording. The case vignette demonstrates how the HVS-recordings revealed the dimension of insomnia caused by restless legs syndrome, and illustrated the cascade of symptoms, challenging behaviors, and resulting medications. CONCLUSION: The strategy of using HVS, although requiring validation and reliability testing, opens the floor for a new "observational sleep medicine," which has been useful in describing discomfort-related behavioral movement patterns in patients with communication difficulties presenting with challenging/disruptive sleep/wake behaviors.

15.
Soc Sci Med ; 79: 76-83, 2013 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-23305724

RESUMO

Children and adolescents with a Fetal Alcohol Spectrum Disorder (FASD) are at high-risk for developing sleep problems (SPs) triggering daytime behavioral co-morbidities such as inattention, hyperactivity, and cognitive and emotional impairments. However, symptoms of sleep deprivation are solely associated with typical daytime diagnosis, such as attention deficit hyperactivity disorder (ADHD) and treated with psychotropic medications. To understand how and why SPs are missed, we conducted qualitative interviews (QIs) with six parents and seven health care professionals (HCPs), and performed comprehensive clinical sleep assessments (CCSAs) in 27 patients together with their caregivers referred to our clinic for unresolved SPs. We used narrative schema and therapeutic emplotment in conjunction with analyzes of medical records to appropriately diagnose SPs and develop treatment strategies. The research was conducted at British Columbia Children's Hospital in Vancouver (Canada) between 2008 and 2011. In the QIs, parents and HCPs exhibited awareness of the significance of SPs and the effects of an SP on the daytime behaviors of the child and the associated burdens on the parents. HCPs' systemic inattention to the sequelae of SPs and the affected family's wellbeing appears due to an insufficient understanding of the various factors that contribute to nighttime SPs and their daytime sequelae. In the CCSAs, we found that the diagnostic recognition of chronic SPs in children and adolescents was impaired by the exclusive focus on daytime presentations. Daytime behavioral and emotional problems were targets of pharmacological treatment rather than the underlying SP. Consequently, SPs were also targeted with medications, without investigating the underlying problem. Our study highlights deficits in the diagnostic recognition of chronic SPs among children with chronic neurodevelopmental disorders/disabilities and proposes a clinical practice strategy, based on therapeutic emplotment that incorporates patients and parents' contributions in recognizing SPs and related sequelae in designing appropriate treatment and care.


Assuntos
Erros de Diagnóstico , Transtornos do Espectro Alcoólico Fetal/psicologia , Qualidade de Vida/psicologia , Transtornos do Sono-Vigília/diagnóstico , Adolescente , Criança , Pré-Escolar , Competência Clínica , Comunicação , Feminino , Humanos , Masculino , Pais/psicologia , Gravidez , Relações Profissional-Família , Pesquisa Qualitativa , Transtornos do Sono-Vigília/terapia , Fatores de Tempo
16.
J Inherit Metab Dis ; 35(6): 1147-52, 2012 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-22358739

RESUMO

European Health Care Systems have not yet accommodated both previous and current migration waves. Children from immigrant families, especially children with chronic conditions, are particularly affected from the shortcomings in medical care. One condition, phenylketonuria (PKU), is an inborn error of metabolism (IEM) which results in intellectual disability unless treated with a lifelong phenylalanine (Phe) restricted diet. In our PKU clinic, patients from families who previously had emmigrated from the geographic area of Turkey to Austria, exhibited worse blood Phe control and cognitive development than comparable patients from native Austrian families. Using structured and semi-structured interviews, questionnaires, and illness narratives, we identified language, psychosocial, economic, educational and cultural barriers as factors influencing adherence to treatment. Our findings led us to conclude that access to interpreter services, exploration of the socio-cultural background and of family ecology, as well as bi-directional communication and medical decision making according to the "best interest of the child" principle, may improve outcomes in patients requiring complex treatment and care.


Assuntos
Erros Inatos do Metabolismo/terapia , Áustria , Criança , Comunicação , Características Culturais , Emigração e Imigração , Etnicidade , Características da Família , Feminino , Humanos , Idioma , Masculino , Erros Inatos do Metabolismo/economia , Erros Inatos do Metabolismo/psicologia , Fenilalanina/sangue , Fenilcetonúrias/sangue , Fenilcetonúrias/dietoterapia , Fenilcetonúrias/economia , Fenilcetonúrias/psicologia , Fatores Socioeconômicos , Turquia/etnologia
17.
Eur J Paediatr Neurol ; 16(5): 403-12, 2012 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-22264650

RESUMO

This article reviews circadian rhythm sleep disorders (CRSDs) of children with neurodevelopmental disabilities. These sleep disturbances frequently occur in this population but they are misunderstood and under diagnosed. The causes and features of CRSD in children with brain disorders differ in many ways from those seen in typically developing children. It is the brain, including the eyes, which regulates sleep and circadian rhythmicity by modulating pineal melatonin production/secretion and when there is significant brain damage, the sleep/wake patterns may be modified. In most instances CRSD are not disorders of the suprachiasmatic nuclei because these small hypothalamic structures only adjust their functions to the changing photic and non-photic modulatory influences. Each form of CRSD is accompanied by characteristic changes in serum melatonin levels and clinical features. When nocturnal melatonin production/secretion is inappropriately timed or impaired in relation to the environment, timed melatonin replacement therapy will often be beneficial. In this review an attempt is made to clarify the neurophysiological mechanisms underlying the various forms of CRSD because without understanding the photic and non-photic influences on sleep, these sleep disorders can not be fully characterized, defined or even appropriately treated. In the future, the existing definitions for the different forms of CRSD should be modified by experts in pediatric sleep medicine in order to include children with neurodevelopmental disabilities.


Assuntos
Encéfalo/fisiopatologia , Deficiências do Desenvolvimento/fisiopatologia , Melatonina/fisiologia , Transtornos do Sono do Ritmo Circadiano/fisiopatologia , Sono/fisiologia , Criança , Deficiências do Desenvolvimento/complicações , Humanos , Transtornos do Sono do Ritmo Circadiano/complicações
18.
Int J Pediatr ; 20102010.
Artigo em Inglês | MEDLINE | ID: mdl-20706655

RESUMO

This article describes the combined clinical experience of a multidisciplinary group of professionals on the sleep disturbances of children with fetal alcohol spectrum disorders (FASD) focusing on sleep hygiene interventions. Such practical and comprehensive information is not available in the literature. Severe, persistent sleep difficulties are frequently associated with this condition but few health professionals are familiar with both FASD and sleep disorders. The sleep promotion techniques used for typical children are less suitable for children with FASD who need individually designed interventions. The types, causes, and adverse effects of sleep disorders, the modification of environment, scheduling and preparation for sleep, and sleep health for their caregivers are discussed. It is our hope that parents and also researchers, who are interested in the sleep disorders of children with FASD, will benefit from this presentation and that this discussion will stimulate much needed evidence-based research.

19.
Pediatrics ; 122(6): 1343-50, 2008 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-19047255

RESUMO

Sleep disturbances in children with neurodevelopmental disabilities are common and have a profound effect on the quality of life of the child, as well as the entire family. Although interventions for sleep problems in these children often involve a combination of behavioral and pharmacologic strategies, the first line of treatment is the promotion of improved sleep habits or "hygiene." Despite the importance of sleep-hygiene principles, defined as basic optimal environmental, scheduling, sleep-practice, and physiologic sleep-promoting factors, clinicians often lack appropriate knowledge and skills to implement them. In addition, sleep-hygiene practices may need to be modified and adapted for this population of children and are often more challenging to implement compared with their healthy counterparts. This first comprehensive, multidisciplinary review of sleep hygiene for children with disabilities presents the rationale for incorporating these measures in their treatment, outlines both general and specific sleep-promotion practices, and discusses problem-solving strategies for implementing them in a variety of clinical practice settings.


Assuntos
Cuidado da Criança/métodos , Deficiências do Desenvolvimento/complicações , Transtornos Mentais/complicações , Qualidade de Vida , Transtornos do Sono-Vigília/etiologia , Transtornos do Sono-Vigília/reabilitação , Cuidadores/psicologia , Criança , Pré-Escolar , Deficiências do Desenvolvimento/diagnóstico , Meio Ambiente , Feminino , Humanos , Lactente , Masculino , Transtornos Mentais/diagnóstico , Saúde Mental , Relações Pais-Filho , Pediatria/normas , Pediatria/tendências , Medição de Risco , Índice de Gravidade de Doença , Estresse Psicológico
20.
J Perinat Med ; 33(5): 435-41, 2005.
Artigo em Inglês | MEDLINE | ID: mdl-16238539

RESUMO

BACKGROUND: Endotracheal (ET) suctioning causes cardiovascular side effects and may impair cerebral hemodynamics. Subjectively, these effects are worse if patients are disconnected from the ventilator (open system suctioning, OSS) than if they remain connected to the ventilator during suctioning (closed system suctioning, CSS). It is uncertain whether the response to ET suctioning is similar in conventionally (CV) and high frequency (HF) ventilated patients. OBJECTIVES: To investigate if the mode of suctioning or of mechanical ventilation influences cerebral blood flow velocities (CBFVs) in extremely low birth weight (ELBW) infants. METHODS: Transcranial Doppler sonography in the middle cerebral artery during OSS and CSS in CV and HF ventilated ELBW infants. RESULTS: Forty-one measurements were performed in 19 infants within the first two weeks of life. Mean CBFVs decreased during suctioning from baseline 18.8 to 14.3 cm/s (-24%), increased thereafter to 24.7 cm/s (73%) and then returned to baseline (20.8 cm/s). Changes in CBFV were less pronounced in infants with higher baseline CBFVs. Heart rate decreased during ET suctioning and thereafter returned to baseline values. The alterations in CBFV and heart rate were both independent of the mode of ventilation or suctioning. CONCLUSIONS: The mode of suctioning or ventilation does not influence CBFVs in ELBW infants.


Assuntos
Ventilação de Alta Frequência , Recém-Nascido de muito Baixo Peso , Artéria Cerebral Média/fisiologia , Síndrome do Desconforto Respiratório/fisiopatologia , Sucção , Telencéfalo/irrigação sanguínea , Velocidade do Fluxo Sanguíneo , Feminino , Hemodinâmica , Humanos , Recém-Nascido , Intubação Intratraqueal , Masculino , Artéria Cerebral Média/diagnóstico por imagem , Fluxo Pulsátil , Ultrassonografia
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