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Assessment for autism spectrum disorder (ASD) in the pediatric female population entails unique diagnostic complexities. Females are often misdiagnosed, undiagnosed, or receive an ASD diagnosis at a later age than males. Male bias in ASD, masking behaviors, cultural norms, and overlapping neurodevelopmental comorbidities (such as attention deficit/hyperactivity disorder and intellectual disability) contribute to this phenomenon. The authors present two clinical cases evaluated in an interdisciplinary developmental behavioral pediatrics (DBP) team to highlight these considerations. Cases describe adolescent and school aged females with medical complexity who did not initially appear to have ASD symptoms but later were diagnosed with ASD. Patient anonymity is preserved. Best practice recommendations are discussed. Shared decision making, intentional history taking, thorough observation of behavior and restrictive/repetitive/sensory interests in multiple settings, and attention to social communication in the context of cognitive capacity are essential for ASD assessment in pediatric females.
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OBJECTIVE: The purpose of this review was to highlight the need to consider factors other than language when adapting tests across cultural groups and to offer a list of tests that have been adapted for use among patients from or descended from Latin American Countries. Despite efforts in the field through publications and workshops, the authors were aware of continued errors in cross-cultural assessment of these patients, resulting in misdiagnosis and unintentional inequitable care. Thus, we sought to reinforce the existing literature. METHOD: We reviewed the literature pertaining to cross-cultural adaptation of neuropsychological measures. Relevant papers were identified by our institution's Academic Enhanced Search Option (AcESO) Database, PubMed, and Google Scholar. RESULTS: 102 papers, articles, and other published literature were reviewed describing issues related to the adaptation of tests for groups originally from or descended from Latin American Countries residing in the United States. CONCLUSIONS: It is imperative that tests be appropriately developed or adapted for the target population with appropriate normative data available, and ideally administered by a fluent speaker trained in assessment. Inappropriate use of tests not adapted for a particular patient's language and country of origin can result in misdiagnosis, potentially resulting in harm to the individual.
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Neuropsychological assessment in rare neurodevelopmental disorders has provided clinicians and researchers with a more comprehensive view of natural history as well as opportunities for additional endpoints in treatment trials. While challenges to protocol development have been addressed in the literature, cultural considerations have been overly broad resulting in limited utility when including mixed international samples. Using experiences over the past five years with the development of ten different protocols for neurogenetic rare diseases, this paper presents further considerations for protocol development that are culturally sensitive to international samples. Recommendations are offered across areas including participants from multiple countries; cognitive, sensory and motor impairments; psychometrics; and assessment logistics. A neuropsychological assessment selection checklist that guides researchers and clinicians through considerations and a standard operating procedure that provides guidance on thinking through the assessment process are offered.
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Objective: Social cognition does not exist within a vacuum. One's culture and surrounding social environment influence 1) development of social skills and behaviors, and 2) society's expectations regarding "normal" behavior versus behaviors consistent with the diagnosis of Autism Spectrum Disorder (ASD). Use of a comprehensive cultural framework such as Fujii's ECLECTIC model undergirds valid ASD testing by enhancing clinician awareness of potential biases during clinical decision-making and by supporting culturally relevant recommendations. Method: Four diverse pediatric patients presenting for concerns of ASD are described. Neuropsychological test data and salient cultural considerations are presented within the ECLECTIC framework. Results: The cases illustrate relevant cultural factors critical to the ASD assessment for youth with wide diversity (Southeast Asian, Deaf, Black, Hispanic/Latinx, and Chinese cultures) and varied contextual factors (adoption, underlying Down syndrome). The ECLETIC model better allows integration of salient factors such as cognition, family dynamics, behaviors, educational services, and language dominance. Conclusions: Unrecognized ethnocentric biases may shadow the complexities and nuances involved in ASD assessment across cultures. Such errors are minimized using a comprehensive cultural framework to guide equitable neuropsychological services. The ECLECTIC model's emphasis on cultural and contextual factors results in more accurate findings and more individualized planning for the patient. Recommendations for clinical application are provided.
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Transtorno do Espectro Autista , Adolescente , Povo Asiático , Transtorno do Espectro Autista/complicações , Transtorno do Espectro Autista/diagnóstico , Criança , Cognição , Humanos , Idioma , Testes NeuropsicológicosRESUMO
Children with 22q11.2 deletion syndrome (22q11.2DS) have diverse neurodevelopmental and mental health profiles involving cognitive impairments and behavioral symptomatology that evolve over the lifespan. 22q11.2DS is the second-most common cause of developmental delay in children. Frequent physical manifestations include impact to skeletal, cardiac, immunological, respiratory, renal, auditory, and gastrointestinal systems. Neuropsychological impact ranges from early developmental delay to learning disabilities to more global intellectual disability. This population is also at higher risk for psychiatric conditions including Attention Deficit Hyperactivity Disorder, Anxiety Disorder, Bipolar Disorder and early Schizophrenia. The present case series relays cross-sectional findings from a 3-year -old Black/Non-Hispanic male, a 5-year -old White/Hispanic/Latina female, and an 8-year -old White/Hispanic/Latina female, diagnosed with 22q11.2DS via whole exome sequencing. Based on the referral question, various components of intellectual, attention/executive, memory, language, visual-motor/fine-motor, academic, adaptive, and emotional/behavioral functioning were examined across cases. Results revealed cognitive scores that ranged from exceptionally low to below average, consistent with the variability in cognitive functioning documented in the literature. Their neurodevelopmental and mental health symptoms appear to be consistent with time points reported in the literature including Autism Spectrum Disorder in the youngest patient and elevated levels of anxiety and internalizing behaviors in the oldest patient, placing that patient at a greater risk for further psychiatric difficulties. Therefore, longitudinal documentation of linkages between clinical neuropsychological presentations and specific genetic characteristics in 22q11.2DS is warranted to identify consistent developmental differences across the lifespan.
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Transtorno do Espectro Autista , Síndrome de DiGeorge , Transtornos de Ansiedade , Estudos Transversais , Síndrome de DiGeorge/complicações , Síndrome de DiGeorge/genética , Feminino , Humanos , Masculino , FenótipoRESUMO
OBJECTIVE: In pediatric neuropsychology multiple barriers such as long wait times until an appointment, insurance coverage, and limited providers who are bilingual/bicultural or who sub-specialize in pediatric neuropsychology, often slow families from receiving diagnoses and interventions in a timely and affordable manner. This paper focuses on increasing accessibility through the development of a video-based, pediatric teleneuropsychology (TeleNP) practice model that was developed in a private practice 2 years before the COVID-19 pandemic. METHOD: 'Design thinking' methodology to problem-solving was utilized to innovate the traditional neuropsychology practice model in under-served areas who may have limited financial and healthcare resources. The practice model approach to include a virtual diagnostic clinic with increased patient and provider efficiency was created to enhance accessibility for patients and sustainability for providers. RESULTS: Video-based TeleNP screenings were conducted for 67 children with developmental (i.e., attention deficit hyperactivity disorder, autism spectrum disorder) and language disorders, as well as concussion and psychiatric diagnoses. Additional comorbidities were identified in 65.6% of children. Follow-up data approximately 2 months later revealed 98.5% of children were receiving new interventions as a result of the video-based TeleNP assessment. CONCLUSION: Video-based TeleNP benefits the consumer as it can reduce wait times, decrease family financial burden (i.e., travel and parent time off work), expedite referrals for interventions, and provide geographically under-served populations access to providers who are linguistically and culturally responsive. For providers, this model revealed improvements with direct implications for cost-saving, thereby facilitating long-term economic sustainability within a private practice healthcare marketplace.
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COVID-19 , Pandemias , Transtorno do Espectro Autista , Criança , Humanos , Testes Neuropsicológicos , Neuropsicologia , Prática PrivadaRESUMO
The field of neuropsychology is becoming increasingly responsive to addressing the specific needs of an ever-growing Hispanic/Latinx population. As such, bilingualism and bilingual education are at the forefront of considerations for neuropsychologists. This paper examines models of bilingual academic instruction and levels of bilingualism and how they impact neuropsychological findings and diagnostic determinations in pediatrics. The present case series highlights five children assessed in a pediatric medical setting. Various profiles are analyzed to highlight the intricacies in assessment that must be considered. These findings present a set of considerations as a step toward a systematic approach to bilingual neuropsychological assessment.
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Cognição/fisiologia , Hispânico ou Latino/psicologia , Multilinguismo , Criança , Feminino , Humanos , Masculino , Testes Neuropsicológicos , Estados UnidosRESUMO
BACKGROUND: Adult survivors of childhood cancer and their siblings are compared on one of the most salient developmental milestones of adulthood, the ability to live independently. PROCEDURE: Adult survivors of childhood cancers (n = 6,047) and siblings (n = 2,326), all 25 years of age and older, completed a long-term follow-up questionnaire that assessed adaptive, neurocognitive, and psychological functioning, as well as demographic and health status. Multivariable logistic regression analyses and structural equation modeling (SEM) were used to identify predictors of independent living. RESULTS: Compared to siblings (n = 206, 8.7%), survivors (n = 1063; 17.7%) were more than twice as likely to live dependently (OR 2.07; 95% confidence interval [CI] 1.77-2.42). Survivors diagnosed with CNS tumors (OR 0.13, 95% CI 0.10-0.18) or leukemia (OR 0.29, 95% CI 0.23-0.27) were significantly less likely to live independently compared to those diagnosed with Hodgkin lymphoma. Other risk factors for reduced independent living included cranial radiation (≤ 24 Gy OR 0.76, 95% CI 0.62-0.93; >24 Gy OR 0.31, 95% CI 0.24-0.41), use of neuroleptic, anticonvulsant, or psychostimulant medication (OR 0.32, 95% CI 0.24-0.43), attention and processing speed problems (OR 0.58, 95% CI 0.47-0.71), poor physical functioning (OR 0.49, 95% CI 0.38-0.63), depression (OR 0.68, 95% CI 0.53-0.88), and racial/ethnic minority status (OR 0.39, 95% CI 0.30-0.51). SEM demonstrated that neurocognitive functioning had both direct effects on independent living status, and indirect effects through use of neurologically directed medication, depression, and poor mental health. CONCLUSION: Adult survivors of childhood cancer who experience neurocognitive, psychological, or physical late effects are less likely to live independently as adults.