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1.
J Pediatr Surg ; 2024 Apr 10.
Artículo en Inglés | MEDLINE | ID: mdl-38744639

RESUMEN

BACKGROUND: Social determinants of health (SDoH) influence overall health, although little is known about the SDoH for pediatric patients requiring surgical services. This study aims to describe SDoH for pediatric surgical patients attending out-patient, community, and outreach clinics, as well as demonstrate the feasibility of identifying and addressing SDoH and Adverse Childhood Experiences (ACEs) when appropriate. METHODS: A cross-sectional study using surveys evaluating SDoH that were distributed to families attending pediatric surgical clinics over a two-year period. The pilot survey used validated questions and was later refined to a shorter version with questions on: Barriers to care, Economic factors, Adversity, Resiliency and Social capital (BEARS). Data was analyzed with descriptive and inferential statistics. RESULTS: 851 families across 13 clinics participated. One third of families reported not having a primary health care provider or being unable to turn to them for additional support. One in four families were found to have a household income less than the Canadian after-tax low-income threshold (<$40,000 CAD). Two-thirds of families answered questions about ACEs, and those with more ACEs were more likely to report a low income. Forty percent of families rarely or only sometimes had adequate social support. CONCLUSION: This survey tool enabled discussions between families and care providers, which allowed clinicians to appropriately follow-up with families and refer them to social work for further support when indicated. Addressing concerns around SDoH within a busy surgical clinical is feasible and may positively affect long-term health outcomes and equitable resource allocation. LEVEL OF EVIDENCE: IV.

2.
Artículo en Inglés | MEDLINE | ID: mdl-38478166

RESUMEN

OBJECTIVES: Caring for children in low- and middle-income countries (LMIC) can be challenging. This review article aims to explore role of telemedicine in supporting pediatric care in LMIC. METHODOLOGY: A narrative review of existing English and Spanish literature was conducted to assess role of telemedicine to support pediatric care in LMIC. RESULTS: Beside medical education and direct pediatric care, telemedicine can provide sub-specialties consultations without extra burden on families. Additionally, telemedicine can help in lowering under-5 mortality by supporting neonatal care, infectious illnesses, and non-communicable diseases (NCDs). Telemedicine can be a gate for universal coverage for all children at a lower cost. For over a decade, it has been implemented successfully and sustained in a few LMIC. However, challenges in implementing telemedicine are enormous. Still, opportunities arise by using simpler technology, low-width band internet, smartphones, instant messaging applications and solar energy. COVID-19 pandemic facilitated acceptance and applicability of telemedicine worldwide including LMIC. Nevertheless, governments must regulate telemedicine by issuing policies and ensuring employment of local experts when possible to meet local resources and cultural competency. CONCLUSION: Telemedicine has proven successful in improving pediatrics care. Many LMIC should take advantage of this innovation to promote equity and access to high quality pediatric care.

3.
Allergy Asthma Clin Immunol ; 18(1): 50, 2022 Jun 11.
Artículo en Inglés | MEDLINE | ID: mdl-35690869

RESUMEN

BACKGROUND: 22q11.2 Deletion Syndrome (22q11.2DS) can result in array of congenital abnormalities including immune dysfunction. International guidelines recommend immune evaluation of 22q11.2DS patients prior to live vaccine administration. A rotavirus vaccination program for infants aged 2 and 4 months was implemented in British Columbia (BC) in 2012. Adherence to immune workup recommendations prior to 2 months of age in patients with 22q11.2DS and adverse events following immunization is not known. METHODS: A retrospective chart review of children diagnosed with 22q11.2DS in BC from January 1, 2012 to January 1, 2019 was conducted. Demographic, clinical, laboratory, immunization data and adverse reactions to vaccines were obtained. International guidelines were used as a reference for adherence to immunologic workup recommendations. RESULTS: Forty-two children with 22q11.2DS were included. Immunization records were available for 39 children, and 22 (52.3%) received at least one dose of a live rotavirus vaccine. No adverse events following immunization were noted in clinical records. While 25 out of 27 (92.6%) of patients who received an immunological workup had a CD4 + lymphocyte count to qualify for safe administration of a live vaccination, only 12 (44%) received the Rotavirus vaccine. Of 22 infants diagnosed with 22q11.DS prior to 8 weeks of age, only ten (45.5%) received an immune workup before the rotavirus vaccine. CONCLUSIONS: The majority of our infant cohort did not receive medical care consistent with international 22q11.2DS vaccination and immunological surveillance recommendations. More effective dissemination of 22q11.2DS guidelines and improved immunological assessment for infants with 22q11.2DS in BC is necessary.

4.
Cleft Palate Craniofac J ; 59(12): 1482-1489, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-34730452

RESUMEN

This study aimed to describe the social determinants of health (SDoH) for patients receiving multidisciplinary team care in a Cleft Palate-Craniofacial program, develop responsive and consistent processes to include trauma-informed psychosocial histories, promote discussions about additional "non-medical" factors influencing health and surgical outcomes, and demonstrate that these activities are feasible in the context of multidisciplinary patient-provider interactions.Single-site, cross-sectional study using a questionnaire.Participants were recruited from a provincial quaternary care Cleft Palate-Craniofacial program at British Columbia Children's Hospital in Vancouver, BC, Canada.290 families completed the questionnaire.34% of families experience significant barriers to accessing primary health care, 51% struggle financially, and 11% scored four or more on the Adverse Childhood Experiences scale. Furthermore, 47% reported not having adequate social support in their lives, and 5% reported not feeling resilient at the time of the survey.Patients with cleft and craniofacial anomalies have complex needs that extend beyond the surgical and medical care they receive. It is critical that all Cleft and Craniofacial teams incorporate social histories into their clinic workflow and be responsive to these additional needs. Discussions surrounding SDoH and adversity are welcomed by families; being involved in the care and decision-making plans is highly valued. Healthcare providers can and should ask about SDoH and advocate for universal access to responsive, site-based, social work support for their patients.


Asunto(s)
Experiencias Adversas de la Infancia , Labio Leporino , Fisura del Paladar , Niño , Humanos , Fisura del Paladar/cirugía , Estudios Transversales , Determinantes Sociales de la Salud , Hospitales Pediátricos , Colombia Británica , Labio Leporino/cirugía
5.
Pediatr Dermatol ; 38 Suppl 2: 174-178, 2021 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-34398992

RESUMEN

Social pediatric initiatives aim to improve health outcomes for vulnerable children by working in the community to empower families, to enhance protective factors that mitigate adverse childhood experiences (ACEs), and to deliver place-based health care. In 2012, pediatric dermatology was added as a component of the Responsive, Interdisciplinary Intersectoral Child and Community Health Education and Research (RICHER) social pediatric program in Vancouver, BC. We share our experience with inclusion of pediatric dermatology in a well-established social pediatric program as well as lessons we have learned in the first 8 years of our partnership. Partnership, bridging trust, knowledge sharing, empowerment, consistency, and flexibility were found to be central elements in the success of this endeavor.


Asunto(s)
Servicios de Salud del Niño , Dermatología , Pediatría , Niño , Atención a la Salud , Familia , Humanos
6.
Paediatr Child Health ; 25(6): 333-336, 2020 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-32959001

RESUMEN

The COVID-19 pandemic is an unprecedented global crisis, affecting millions globally and in Canada. While efforts to limit the spread of the infection and 'flatten the curve' may buffer children and youth from acute illness, these public health measures may worsen existing inequities for those living on the margins of society. In this commentary, we highlight current and potential long-term impacts of COVID-19 on children and youth centring on the UN Convention of the Rights of the Child (UNCRC), with special attention to the accumulated toxic stress for those in difficult social circumstances. By taking responsive action, providers can promote optimal child and youth health and well-being, now and in the future, through adopting social history screening, flexible care models, a child/youth-centred approach to "essential" services, and continual advocacy for the rights of children and youth.

7.
J Popul Ther Clin Pharmacol ; 27(3): e1-e13, 2020 07 16.
Artículo en Inglés | MEDLINE | ID: mdl-32757546

RESUMEN

Psychotropic medication treatment of individuals who have experienced prenatal alcohol exposure (PAE) has lagged behind psychosocial interventions. Multiple psychotropic medications are often prescribed for those diagnosed with a range of neurodevelopmental disabilities and impairments of PAE (neurodevelopmental disorder associated with prenatal alcohol exposure and/or fetal alcohol spectrum disorder [ND-PAE/FASD]). Despite the diverse comorbid mental disorders, there are no specific guidelines for psychotropic medications for individuals with ND-PAE/FASD. When prescribed, concerned family members and caregivers of individuals with ND-PAE/FASD reported that polypharmacy, which was typical and adverse effects render the psychotropic medications ineffective. The objective of this work was to generate a treatment algorithm for the use of psychopharmacological agents specifically for individuals with ND-PAE/FASD. The development of decision tree for use to prescribe psychotropic medications incorporated findings from previous research and the collective clinical experience of a multidisciplinary and international panel of experts who work with individuals with ND-PAE/FASD, including an algorithm specialist. After multiple meetings and discussions, the experts reached consensus on how best to streamline prescribing along neurodevelopmental clusters. These were subdivided into four ligand-specific, receptor-acting medication targets (hyperarousal, emotional dysregulation, hyperactive/neurocognitive, and cognitive inflexibility). Each cluster is represented by a list of common symptoms. The experts recommended that prescribers first ensure adequate psychosocial and environmental, including sufficient dietary, exercise, and sleep support before prescribing psychotropic medications. Treatment then progresses through three steps of psychotropic medications for each cluster. To support established treatment goals, the most function impairing clusters are targeted first.


Asunto(s)
Algoritmos , Trastornos del Espectro Alcohólico Fetal , Efectos Tardíos de la Exposición Prenatal , Psicotrópicos/administración & dosificación , Árboles de Decisión , Esquema de Medicación , Femenino , Humanos , Masculino , Embarazo
8.
Plast Surg (Oakv) ; 27(4): 311-318, 2019 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-31763331

RESUMEN

OBJECTIVE: A 2016 review of the BC Children's Hospital Cleft Palate - Craniofacial Program (CPP) revealed that one-third of patients met the program's care recommendations and half met the American Cleft Palate-Craniofacial Association guidelines. This study reviews patients on the CPP waitlist and determines median wait times and missed clinical assessments as well as identifies how wait times are influenced by medical complexity, specialized speech service needs, vulnerability, and distance from clinic. DESIGN: Cross-sectional. SETTING: BC Children's Hospital Cleft Palate-Craniofacial Program. PATIENTS: Five hundred seventy-six waitlisted patients. MAIN OUTCOME MEASURES: Additional wait time after recommended appointment date. Correlation of additional wait time with diagnosis, number of specialists required, speech services needed, vulnerability, and distance from the clinic. Missed plastic surgery, speech, and orthodontic assessments according to CPP team recommendations and ACPA guidelines. RESULTS: Patients had a median additional wait time of 11 months (interquartile range: 5-27). Longer additional wait times were associated with a craniofacial diagnosis (P = .019), a need for formal speech assessments or evaluations (P < .001), or a requirement to see multiple specialists (P < .001). Vulnerability and distance from clinic did not affect wait times. Plastic surgery assessments were not available at the preschool and preteen time points for 45 (8%) patients, 355 (62%) patients were unable to access speech assessments, and 120 (21%) were unable to complete an orthodontic assessment. CONCLUSION: Patients wait up to an additional year to be seen by the CPP and miss speech, orthodontic, and surgical assessments at key developmental milestones. Additional resources are required to address these concerns.


OBJECTIF: Une analyse du programme de chirurgie labiofaciale et crâniofaciale (PCLC) du BC Children's Hospital réalisée en 2016 a révélé que le tiers des patients respectaient les recommandations du programme et la moitié, les lignes directrices de l'American Cleft Palate-Craniofacial Association (ACPA). La présente étude visait à passer en revue les patients sur la liste d'attente du PCLC, à déterminer la liste d'attende médiane et les évaluations cliniques ratées et à établir l'effet de la complexité médicale, des besoins en orthophonie, de la vulnérabilité et de la distance de la clinique sur les temps d'attente. MÉTHODOLOGIE: Transversale. CONTEXTE: Programme de chirurgie labiofaciale et crâniofaciale du BC Children's Hospital. PATIENTS: 576 sur la liste d'attente. PRINCIPALES MESURES DE RÉSULTATS: Temps d'attente supplémentaire après la date recommandée du rendez-vous. Corrélation du temps d'attente supplémentaire avec le diagnostic, le nombre de spécialistes requis, les besoins en orthophonie, la vulnérabilité et la distance de la clinique. Évaluations ratées en chirurgie plastique, en orthophonie et en orthodontie en fonction des recommandations de l'équipe du PCLC et des lignes directrices de l'ACPA. RÉSULTATS: Les patients devaient subir un temps d'attente supplémentaire médian de 11 mois (plage interquartile de 5 à 27). Des temps d'attente supplémentaires plus longs s'associaient à un diagnostic crâniofacial (P = 0,019), à la nécessité de subir une évaluation officielle en orthophonie (P < 0,001) ou à la nécessité de consulter de multiples spécialistes (P < 0,001). La vulnérabilité et la distance de la clinique n'avaient pas d'incidence sur les temps d'attente. Les évaluations en chirurgie plastique n'étaient pas disponibles pour 45 patients (8 %) pendant la période préscolaire et à la préadolescence, alors que 355 patients (62 %) n'avaient pas eu accès à une évaluation en orthophonie et 120 (21 %), en orthodontie. CONCLUSION: Les patients attendent jusqu'à une année supplémentaire avant d'être vus par le PCLC et ratent des évaluations en orthophonie, en orthodontie et en chirurgie lors d'étapes importantes de leur développement. Des ressources supplémentaires s'imposent pour corriger ces lacunes.

9.
Alcohol Clin Exp Res ; 43(5): 833-841, 2019 05.
Artículo en Inglés | MEDLINE | ID: mdl-30889291

RESUMEN

BACKGROUND: Prenatal alcohol exposure (PAE) is linked to alterations of cerebral white matter, including volume and nonspecific diffusion magnetic resonance imaging (MRI) indices of microstructure in humans. Some animal models of PAE have demonstrated myelination deficiencies, but myelin levels have not yet been evaluated in individuals with PAE. Multiecho T2 MRI offers a quantitative method to estimate myelin water fraction (MWF; related to myelin content) noninvasively, which was used here to evaluate brain myelination in children with PAE. METHODS: Participants with PAE (n = 10, 6 females, mean age 13.9 years, range 7 to 18 years) and controls (n = 14, 11 females, mean age 13.2 years, range 9 to 16 years) underwent 3T MRI of the brain. T2 images (15 minutes acquisition for 32 echoes) were used to create MWF maps from which mean MWF was measured in 12 regions of interest (ROIs) including 8 in white matter and 4 in deep gray matter. RESULTS: As expected, across the combined sample, MWF was highest for major white matter tracts such as the internal capsule and genu/splenium of the corpus callosum (10 to 18%) while the caudate and putamen had MWF less than 5%. Mean MWF was similar across 11/12 brain white and gray matter regions for the PAE and control groups (L/R internal capsule, major forceps, putamen, caudate nucleus, L minor forceps, genu and splenium of corpus callosum). In the PAE group, MWF was positively correlated with age in the genu of corpus callosum and right minor forceps, notably 2 frontal tracts. CONCLUSIONS: Given comparable MRI-derived myelination fraction measures in PAE relative to controls, white matter alterations shown in other imaging studies, such as diffusion tensor imaging, may reflect microstructural anomalies related to axon caliber and density.


Asunto(s)
Encéfalo/diagnóstico por imagen , Trastornos del Espectro Alcohólico Fetal/diagnóstico por imagen , Imagen por Resonancia Magnética/métodos , Vaina de Mielina/patología , Sustancia Blanca/diagnóstico por imagen , Adolescente , Encéfalo/metabolismo , Colombia Británica/epidemiología , Niño , Femenino , Trastornos del Espectro Alcohólico Fetal/epidemiología , Trastornos del Espectro Alcohólico Fetal/metabolismo , Humanos , Masculino , Vaina de Mielina/metabolismo , Embarazo , Sustancia Blanca/metabolismo
10.
Isr Med Assoc J ; 21(1): 41-44, 2019 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-30685904

RESUMEN

BACKGROUND: Fetal alcohol spectrum disorder (FASD) may be under-recognized and under-diagnosed in Israel. Fewer than 10 FASD diagnoses were reported between 1998 and 2007; however, several hundred diagnoses have been made since. Furthermore, less than 10% of surveyed Israeli pediatricians reported adequate knowledge of FASD. OBJECTIVES: To determine the prevalence of suspected FASD, to establish a database as a starting point for epidemiological studies, and to develop FASD awareness for health, social, and educational services. METHODS: A chart review was conducted at an educational facility for children and adolescents with behavioral and learning challenges. The following information was extracted: adoption status, history of alcohol/drug abuse in the biological mother, medical diagnoses, medication use, and information regarding impairment in 14 published neurobehavioral categories. Subjects were classified as: category 1 (highly likely FASD) - impairment in three or more neurobehavioral categories and evidence of maternal alcohol abuse was available; category 2 (possible FASD) - impairment in three or more neurobehavioral categories and evidence to support maternal substance abuse (type/time unspecified); and category 3 (unconfirmed likelihood of FASD) - impairment in three or more neurobehavioral categories and no information regarding the biological family. RESULTS: Of 237 files analyzed, 38 subjects (16%) had suspected FASD: 10 subjects (4%) in category 1, 5 (2%) in category 2, and 23 (10%) in category 3. Twenty-seven subjects with suspected FASD (69%) had been adopted. CONCLUSIONS: This study is the most comprehensive review of FASD among Israeli children and adolescents in a population with learning and behavior challenges.


Asunto(s)
Educación Especial/estadística & datos numéricos , Trastornos del Espectro Alcohólico Fetal/epidemiología , Trastornos del Neurodesarrollo/epidemiología , Adolescente , Niño , Femenino , Humanos , Israel/epidemiología , Masculino , Trastornos del Neurodesarrollo/etiología , Prevalencia , Estudios Retrospectivos , Factores de Riesgo
11.
Int J Public Health ; 64(5): 691-701, 2019 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-30582136

RESUMEN

OBJECTIVES: To better understand how social pediatric initiatives (SPIs) enact equitable, integrated, embedded approaches with high-needs children and families while facilitating proportionate distribution of health resources. METHODS: The realist review method incorporated the following steps: (1) identifying the review question, (2) formulating the initial theory, (3) searching for primary studies, (4) selecting and appraising study quality, (5) synthesizing relevant data and (6) refining the theory. RESULTS: Our analysis identified four consistent patterns of care that may be effective in social pediatrics: (1) horizontal partnerships based on willingness to share status and power; (2) bridged trust initiated through previously established third party relationships; (3) knowledge support increasing providers' confidence and skills for engaging community; and (4) increasing vulnerable families' self-reliance through empowerment strategies. CONCLUSIONS: This research is unique because it focused on "how" outcomes are achieved and offers insight into the knowledge, skills and philosophical orientation clinicians need to effectively deliver care in SPIs. Research insights offer guidance for organizational leaders with a mandate to address child and youth health inequities and may be applicable to other health initiatives.


Asunto(s)
Servicios de Salud del Niño/organización & administración , Atención a la Salud/organización & administración , Enfermería de la Familia/organización & administración , Pediatría/organización & administración , Atención Primaria de Salud/organización & administración , Salud Pública/métodos , Apoyo Social , Adolescente , Niño , Preescolar , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Investigación Cualitativa , Reproducibilidad de los Resultados
13.
Alcohol ; 53: 9-18, 2016 06.
Artículo en Inglés | MEDLINE | ID: mdl-27286932

RESUMEN

The hypothalamic-pituitary-adrenal (HPA) axis is impacted by a multitude of pre- and postnatal factors. Developmental programming of HPA axis function by prenatal alcohol exposure (PAE) has been demonstrated in animal models and in human infants, but remains understudied in older children and adolescents. Moreover, early life adversity (ELA), which occurs at higher rates in children with PAE than in non-exposed children, may also play a role in programming the stress response system. In a cohort of children and adolescents with PAE and ELA (PAE + ELA), we evaluated HPA function through assessment of diurnal cortisol activity compared to that in typically developing controls, as well as the associations among specific ELAs, adverse outcomes, protective factors, and diurnal cortisol. Morning and evening saliva samples were taken under basal conditions from 42 children and adolescents (5-18 years) with PAE + ELA and 43 typically developing controls. High rates of ELA were shown among children with PAE, and significantly higher evening cortisol levels and a flatter diurnal slope were observed in children with PAE + ELA, compared to controls. Medication use in the PAE + ELA group was associated with lower morning cortisol levels, which were comparable to controls. Complex associations were found among diurnal cortisol patterns in the PAE + ELA group and a number of ELAs and later adverse outcomes, whereas protective factors were associated with more typical diurnal rhythms. These results complement findings from research on human infants and animal models showing dysregulated HPA function following PAE, lending weight to the suggestion that PAE and ELA may interact to sensitize the developing HPA axis. The presence of protective factors may buffer altered cortisol regulation, underscoring the importance of early assessment and interventions for children with FASD, and in particular, for the many children with FASD who also have ELA.


Asunto(s)
Ritmo Circadiano/fisiología , Hidrocortisona/metabolismo , Efectos Tardíos de la Exposición Prenatal/diagnóstico , Efectos Tardíos de la Exposición Prenatal/metabolismo , Estrés Psicológico/diagnóstico , Estrés Psicológico/metabolismo , Adolescente , Niño , Maltrato a los Niños/psicología , Estudios de Cohortes , Femenino , Humanos , Hidrocortisona/análisis , Acontecimientos que Cambian la Vida , Masculino , Embarazo , Efectos Tardíos de la Exposición Prenatal/psicología , Estudios Retrospectivos , Saliva/química , Saliva/metabolismo , Estrés Psicológico/psicología
14.
PLoS One ; 11(2): e0150370, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-26928125

RESUMEN

Head circumference is used together with other measures as a proxy for central nervous system damage in the diagnosis of fetal alcohol spectrum disorders, yet the relationship between head circumference and brain volume has not been investigated in this population. The objective of this study is to characterize the relationship between head circumference, brain volume and cognitive performance in a large sample of children with prenatal alcohol exposure (n = 144) and healthy controls (n = 145), aged 5-19 years. All participants underwent magnetic resonance imaging to yield brain volumes and head circumference, normalized to control for age and sex. Mean head circumference, brain volume, and cognitive scores were significantly reduced in the prenatal alcohol exposure group relative to controls, albeit with considerable overlap between groups. Males with prenatal alcohol exposure had reductions in all three measures, whereas females with prenatal alcohol exposure had reduced brain volumes and cognitive scores, but no difference in head circumference relative to controls. Microcephaly (defined here as head circumference ≤ 3rd percentile) occurred more often in prenatal alcohol exposed participants than controls, but 90% of the exposed sample had head circumferences above this clinical cutoff indicating that head circumference is not a sensitive marker of prenatal alcohol exposure. Normalized head circumference and brain volume were positively correlated in both groups, and subjects with very low head circumference typically had below-average brain volumes. Conversely, over half of the subjects with very low brain volumes had normal head circumferences, which may stem from differential effects of alcohol on the skeletal and nervous systems. There were no significant correlations between head circumference and any cognitive score. These findings confirm group-level reductions in head circumference and increased rates of microcephaly in children with prenatal alcohol exposure, but raise concerns about the predictive value of this metric at an individual-subject level.


Asunto(s)
Encéfalo/patología , Cognición , Trastornos del Espectro Alcohólico Fetal/patología , Trastornos del Espectro Alcohólico Fetal/fisiopatología , Cabeza/patología , Adolescente , Factores de Edad , Niño , Preescolar , Femenino , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Humanos , Masculino , Microcefalia/complicaciones , Tamaño de los Órganos , Adulto Joven
16.
J Popul Ther Clin Pharmacol ; 21(2): e260-5, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-25019303

RESUMEN

As part of the Canadian Association of Paediatric Health Centres Taskforce on FASD Screening commitment to further pilot, validate and evaluate the multiple components of the Canadian FASD Screening Tool Kit, it was deemed necessary that recent developments and/or improvements in FASD screening were identified and considered. In 2008 a literature review of methods for screening for FASD was published until 2006 and identified five tools which met pre-set criteria. A review of all new papers was published from the period January 2006 until July 1, 2013. Out of 1392 papers, two new screening methods met the inclusion criteria: Clarren et al's new norms for palpebral fissure length by age in Canada; and Breiner et al's extension of the Neurobehavioral Screening Test (NST) to age 4 years. Further work is needed to validate these methods in other settings. 


Asunto(s)
Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/terapia , Pruebas Neuropsicológicas/normas , Derivación y Consulta/normas , Canadá/epidemiología , Femenino , Trastornos del Espectro Alcohólico Fetal/epidemiología , Necesidades y Demandas de Servicios de Salud/normas , Necesidades y Demandas de Servicios de Salud/tendencias , Humanos , Embarazo , Derivación y Consulta/tendencias , Factores de Riesgo , Encuestas y Cuestionarios/normas
17.
J Popul Ther Clin Pharmacol ; 21(2): e197-210, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-24897061

RESUMEN

BACKGROUND: There is a growing need for validated tools to screen children at risk of fetal alcohol spectrum disorders (FASD). The Neurobehavioral Screening Tool (NST) is one of several promising screening measures for FASD, though further evidence is needed to establish the tool's psychometric utility. OBJECTIVE: To assess the predictive accuracy of the NST among children with an FASD diagnosis, with prenatal alcohol exposure (PAE) but no FASD diagnosis, and typically developing controls. METHOD: The NST was completed by caregivers of children ages 6 to 17, including 48 with FASD, 22 with PAE, and 32 typically developing non-exposed controls. Predictive accuracy coefficients were calculated using Nash et al. (2006) criteria, and compared against controls. An alternative scoring scheme was also investigated to determine optimum referral thresholds using item-level total scores. RESULTS: The NST yielded 62.5% sensitivity for participants with FASD and 50% for PAE. Specificity values were 100% with no typically developing control scoring positive. Within the FASD group there was a trend for higher sensitivity among adolescents aged 12 to17 (70.8%) compared with children aged 6 to 11 years (54.2%), p = 0.23. CONCLUSION: The findings support a growing body of literature evidencing psychometric promise for the clinical utility of the NST as an FASD screening tool, though further research on possible age-effects is warranted. The availability of a validated clinical screening tool for FASD, such as the NST, would aid in accurately screening a large number of children and lead to a timelier diagnostic referral.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/psicología , Pruebas Neuropsicológicas/normas , Adolescente , Niño , Preescolar , Estudios Transversales , Función Ejecutiva/fisiología , Femenino , Humanos , Masculino
18.
Arch Dis Child Fetal Neonatal Ed ; 99(4): F286-90, 2014 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-24625434

RESUMEN

INTRODUCTION: Cleft lip with or without palate (CLP) can be diagnosed antenatally through ultrasound, and may be categorised as apparently isolated versus associated with other malformations. Limited data exist on the long-term outcomes following antenatal diagnosis of apparently isolated CLP. AIM: This study examined the long-term post-natal outcomes of CLP when found in isolation antenatally, in order to determine the rates of unexpected additional anomalies, developmental delay or genetic syndromes. PATIENTS AND METHODS: A retrospective chart review of antenatal and post-natal medical charts was completed for a ten-year period between January 2000 and December 2009. At least 2 years of available post-natal clinical information was required for inclusion in the study. RESULTS: A total of 97 cases of antenatally isolated CLP were ascertained. Fifteen pregnancies were terminated. Follow-up data were available for 81 liveborns, though 4 were lost to follow-up prior to 2 years of age. Twelve of the 77 children meeting study criteria were identified to have other major malformations and/or developmental disability either later in the pregnancy or post-natally. Findings included familial clefting syndromes, trisomy 21, autism spectrum disorders, brain malformations, fetal alcohol syndrome and Kabuki syndrome, among other findings. Another 11 children had additional anomalies of minor impact. Examples of findings include a perimembranous ventricular septal defect, mild unilateral optic nerve hypoplasia, mild pulmonary artery stenosis with a small atrial septal defect, and transient delays in fine and gross motor skills. No children with clefting of the lip only had major additional diagnoses.


Asunto(s)
Anomalías Múltiples/epidemiología , Labio Leporino/epidemiología , Fisura del Paladar/epidemiología , Anomalías Múltiples/diagnóstico , Anomalías Múltiples/genética , Colombia Británica/epidemiología , Aberraciones Cromosómicas , Labio Leporino/diagnóstico por imagen , Labio Leporino/genética , Fisura del Paladar/diagnóstico por imagen , Fisura del Paladar/genética , Discapacidades del Desarrollo/diagnóstico , Discapacidades del Desarrollo/epidemiología , Discapacidades del Desarrollo/genética , Femenino , Estudios de Seguimiento , Humanos , Recién Nacido , Cariotipificación , Masculino , Embarazo , Pronóstico , Estudios Retrospectivos , Síndrome , Ultrasonografía Prenatal
19.
Soc Sci Med ; 79: 76-83, 2013 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-23305724

RESUMEN

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.


Asunto(s)
Errores Diagnósticos , Trastornos del Espectro Alcohólico Fetal/psicología , Calidad de Vida/psicología , Trastornos del Sueño-Vigilia/diagnóstico , Adolescente , Niño , Preescolar , Competencia Clínica , Comunicación , Femenino , Humanos , Masculino , Padres/psicología , Embarazo , Relaciones Profesional-Familia , Investigación Cualitativa , Trastornos del Sueño-Vigilia/terapia , Factores de Tiempo
20.
BMC Pediatr ; 12: 158, 2012 Oct 04.
Artículo en Inglés | MEDLINE | ID: mdl-23034058

RESUMEN

BACKGROUND: The Responsive Interdisciplinary Child-Community Health Education and Research (RICHER) initiative is an intersectoral and interdisciplinary community outreach primary health care (PHC) model. It is being undertaken in partnership with community based organizations in order to address identified gaps in the continuum of health services delivery for 'at risk' children and their families. As part of a larger study, this paper reports on whether the RICHER initiative is associated with increased: 1) access to health care for children and families with multiple forms of disadvantage and 2) patient-reported empowerment. This study provides the first examination of a model of delivering PHC, using a Social Paediatrics approach. METHODS: This was a mixed-methods study, using quantitative and qualitative approaches; it was undertaken in partnership with the community, both organizations and individual providers. Descriptive statistics, including logistic regression of patient survey data (n=86) and thematic analyses of patient interview data (n=7) were analyzed to examine the association between patient experiences with the RICHER initiative and parent-reported empowerment. RESULTS: Respondents found communication with the provider clear, that the provider explained any test results in a way they could understand, and that the provider was compassionate and respectful. Analysis of the survey and in-depth interview data provide evidence that interpersonal communication, particularly the provider's interpersonal style (e.g., being treated as an equal), was very important. Even after controlling for parents' education and ethnicity, the provider's interpersonal style remained positively associated with parent-reported empowerment (p<0.01). CONCLUSIONS: This model of PHC delivery is unique in its purposeful and required partnerships between health care providers and community members. This study provides beginning evidence that RICHER can better meet the health and health care needs of people, especially those who are vulnerable due to multiple intersecting social determinants of health. Positive interpersonal communication from providers can play a key role in facilitating situations where individuals have an opportunity to experience success in managing their and their family's health.


Asunto(s)
Servicios de Salud del Niño , Salud de la Familia , Accesibilidad a los Servicios de Salud , Pediatría , Atención Primaria de Salud , Adulto , Canadá , Niño , Femenino , Humanos , Masculino , Poder Psicológico , Riesgo
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