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Individuals with Tourette syndrome (TS) have poorer quality of life (QoL) than their peers, yet factors contributing to poor QoL in this population remain unclear. Research to date has predominantly focused on the impact of tics and psychiatric symptoms on QoL in TS samples. The aim of this cross-sectional, multi-informant study was to identify psychosocial variables that may impact adolescent QoL in TS. Thirty-eight adolescents aged 13 to 17 with TS and 28 age-matched controls participated with a caregiver. No group differences were found on QoL, although the TS group reported reduced QoL compared to population normative data. In the TS group, reduced QoL was associated with lower self-esteem, poorer family functioning, higher stress, and greater depression and anxiety; QoL was unrelated to tic severity. In regression analyses, after adjusting for covariates, family functioning was the strongest predictor of QoL. These results emphasize the need to further explore the influence of psychosocial factors, particularly family functioning, on QoL in adolescents with TS.
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Children with neurologic disorders face increased risks for mental health and neurodevelopmental conditions, with information often limited to parent report. To better understand mental health and neurodevelopmental needs in this population, a retrospective chart review of a convenience sample of children with neurologic disorders referred for a neuropsychological evaluation was conducted in the present study to explore interrater agreement between care team members (referring providers, parents, pediatric neuropsychologist). Qualitative and quantitative data were collected from the evaluation reports of 129 youth (9:0-17:11 years old; 51.2% of female sex) with neurologic disorders (i.e., 38.0% traumatic brain injury, 27.1% epilepsy, 14.7% premature birth, 7.8% pediatric cancer, 3.9% prenatal substance exposure, and 14.7% other) who completed an evaluation in 2019. Over half the youth were flagged for unmet neurodevelopmental and mental health concerns and analyses revealed low interrater agreement for mental health concerns (κ = .324), better agreement for neurodevelopmental concerns (κ = .511), and low sensitivity of referring providers (Se = .326) and parents (Se = .366). One-way analyses of variance uncovered important factors (e.g., symptom severity, adaptive skills) that may account for missed concerns. Findings guide recommendations to strengthen methods for understanding mental health and/or neurodevelopmental concerns in children with neurologic disorders.
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Enfermedades del Sistema Nervioso , Trastornos del Neurodesarrollo , Padres , Humanos , Femenino , Masculino , Niño , Enfermedades del Sistema Nervioso/psicología , Enfermedades del Sistema Nervioso/epidemiología , Adolescente , Estudios Retrospectivos , Padres/psicología , Trastornos del Neurodesarrollo/epidemiología , Trastornos del Neurodesarrollo/psicología , Trastornos Mentales/epidemiología , Variaciones Dependientes del Observador , Salud Mental/estadística & datos numéricosRESUMEN
INTRODUCTION: Children with haemophilia have been reported with increased rates of inattention (IN) and hyperactivity/impulsivity (HI) and, therefore, are particularly vulnerable to poor social and academic outcomes. AIM: To examine the benefit of utilizing a formal screening process for IN/HI in children with haemophilia during comprehensive clinic visits using a quality improvement approach. METHODS: At a single haemophilia treatment centre, screening for psychosocial issues was expanded and formalised to include (1) the Conners 3rd Edition (Conners3) screening tool for IN/HI symptoms administered during the standard psychosocial assessment (SPA) by the social worker and school advocacy coordinator, (2) formal pathways to diagnosis and intervention as indicated including psychology consultation, psychological testing, or referral to community-based mental health professionals, and in-person advocacy assistance in the patient's community school. RESULTS: Forty-four patients, age 9.9 ± 4.8 years (range 3-16) were targeted. The initial screening approach was modified to improve the communication with caretakers during assessments and streamline diagnostic pathways if no, moderate or significant behavioural concerns were identified. Eleven patients had pre-existing mental health diagnoses. Thirteen of the remaining 33 patients (39.4%) received a new mental health diagnosis, ADHD in 8/33 (24.2%). Of the total cohort, 54.5% were found to have a mental health diagnosis. The rate of ADHD (29.5%) was significantly higher than reported in the general population. CONCLUSION: The described process, developed through a QI approach, allowed formal and objective screening for IN/HI, streamlined a pathway to diagnosis and intervention, and identified undiagnosed disabilities in children with haemophilia improving their access to services.
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Trastorno por Déficit de Atención con Hiperactividad , Hemofilia A , Humanos , Niño , Preescolar , Adolescente , Trastorno por Déficit de Atención con Hiperactividad/complicaciones , Trastorno por Déficit de Atención con Hiperactividad/diagnóstico , Trastorno por Déficit de Atención con Hiperactividad/epidemiología , Hemofilia A/complicaciones , Hemofilia A/diagnóstico , Mejoramiento de la Calidad , Conducta Impulsiva , Instituciones AcadémicasRESUMEN
OBJECTIVE: Improve data-driven research to inform clinical decision-making with pediatric epilepsy surgery patients by expanding the Pediatric Epilepsy Research Consortium Epilepsy Surgery (PERC-Surgery) Workgroup to include neuropsychological data. This article reports on the process and initial success of this effort and characterizes the cognitive functioning of the largest multi-site pediatric epilepsy surgery cohort in the United States. METHODS: Pediatric neuropsychologists from 18 institutions completed surveys regarding neuropsychological practice and the impact of involvement in the collaborative. Neuropsychological data were entered through an online database. Descriptive analyses examined the survey responses and cognitive functioning of the cohort. Statistical analyses examined which patients were evaluated and if composite scores differed by domain, demographics, measures used, or epilepsy characteristics. RESULTS: Positive impact of participation was evident by attendance, survey responses, and the neuropsychological data entry of 534 presurgical epilepsy patients. This cohort, ages 6 months to 21 years, were majority White and non-Hispanic, and more likely to have private insurance. Mean intelligence quotient (IQ) scores were below to low average, with weaknesses in working memory and processing speed. Full-scale IQ (FSIQ) was lowest for patients with younger age at seizure onset, daily seizures, and magnetic resonance imaging (MRI) abnormalities. SIGNIFICANCE: We established a collaborative network and fundamental infrastructure to address questions outlined by the Epilepsy Research Benchmarks. There is a wide range in the age and IQ of patients considered for pediatric epilepsy surgery, yet it appears that social determinants of health impact access to care. Consistent with other national cohorts, this US cohort has a downward shift in IQ associated with seizure severity.
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Epilepsia , Humanos , Niño , Epilepsia/complicaciones , Convulsiones/complicaciones , Pruebas de Inteligencia , Cognición , Imagen por Resonancia Magnética , Pruebas Neuropsicológicas , Resultado del TratamientoRESUMEN
Many children with cancer are diagnosed during infancy and toddlerhood (< 3 years of age), potentially resulting in disrupted and/or missed developmental opportunities. Our objective was to describe the functioning of infants and toddlers with cancer who were clinically referred for evaluation at a hospital-based psychology clinic. Data from 29 very young children with cancer (Mage = 23.62 ± 6.6 months; 55.2% male) who completed clinically referred assessments from 2010 to 2015 were abstracted. Children were 11.3 months post-diagnosis (SD = 7.77, range 1-29 months) with just over half off-therapy at the time of assessment (55.2%). Overall, developmental functioning was significantly below expectations [t(22) = - 8.99, p < .001]. Adaptive functioning [t(25) = - 6.41, p < .001] was also significantly below expectations. Infants and toddlers with cancer appear to be at significant risk for weaknesses in early cognitive and adaptive functioning. The margin of deficits found in this study warrant the need for further investigation and consideration of this young population to ensure optimal functional development.
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Trastornos del Conocimiento/complicaciones , Discapacidades del Desarrollo/complicaciones , Neoplasias/complicaciones , Preescolar , Cognición , Trastornos del Conocimiento/psicología , Discapacidades del Desarrollo/psicología , Femenino , Humanos , Lactante , Masculino , Neoplasias/psicología , Derivación y ConsultaRESUMEN
Prenatal opioid exposure is one consequence of the opioid epidemic, but effects on child development remain poorly understood. There is emerging evidence that children exposed to opioids in utero exhibit elevated emotional and behavioral problems, which may be partially due to alterations in cognitive control. Using multiple methods (i.e., neuropsychological, behavioral, and event-related potential [ERP] assessments), the present study examined differences in emotional, behavioral, and cognitive control difficulties in preschool-aged children with (n = 21) and without (n = 23) prenatal opioid exposure (Mage = 4.30, SD = 0.77 years). Child emotional and behavioral problems were measured with a caregiver questionnaire, indicators of cognitive control were measured using developmentally appropriate behavioral (i.e., delay discounting, Go/No-Go) and neuropsychological (i.e., Statue) tasks, and electroencephalogram was recorded to error and correct responses in a Go/No-Go task. ERP analyses focused on the error-related negativity (ERN), an ERP that reflects error monitoring, and correct-response negativity (CRN), a component reflecting performance monitoring more generally. Opioid exposure was associated with elevated difficulties across domains and a blunted ERN, reflecting altered cognitive control at the neural level, but groups did not significantly differ on behavioral measures of cognitive control. These result replicate prior studies indicating an association between prenatal opioid exposure and behavioral problems in preschool-aged children. Further, our findings suggest these differences may be partially due to children with prenatal opioid exposure exhibiting difficulties with cognitive control at the neural level. The ERN is a potential target for future research and intervention efforts to address the sequelae of prenatal opioid exposure.
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Analgésicos Opioides , Electroencefalografía , Niño , Preescolar , Femenino , Embarazo , Humanos , Analgésicos Opioides/efectos adversos , Potenciales Evocados/fisiología , Desarrollo Infantil , CogniciónRESUMEN
PURPOSE OF REVIEW: It has been recognized for some time now, that compared with the normal population, patients with idiopathic inflammatory myopathies (IIM) live with an increased risk of developing malignancy. In the majority of these patients, cancer-associated myositis appears to have some paraneoplastic features. The aim of the present review is to describe new data that explain the connection between myositis and malignant diseases, as well as to highlight its value in the current management of these patients. RECENT FINDINGS: Antigen expressions and patterns shared by regenerating muscle and cancers raise questions about whether myositis cases without clinically observable cancer may represent a fully successful antitumor immune response with bystander damage to regenerating muscle. The discovery of anti-155/140 autoantibody may aid in the better diagnosis of adult IIM patients with a higher risk of malignancy. It also may help the better understanding of paraneoplastic myositis. SUMMARY: Cancer-associated myositis differs from primary myositis in many aspects. Prognosis and life-expectancy are determined by the underlying malignancy. Therefore, patient-specific examinations for detection of an underlying cancer are important in the management of patients. Recent clinical findings and new possibilities in immunoserological testing may result in the elaboration of an evidence-based recommendation for cancer screening programs in patients with IIM in the future.
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Miositis/complicaciones , Síndromes Paraneoplásicos/etiología , Adulto , Autoanticuerpos/análisis , Autoinmunidad , Niño , Humanos , Pruebas Inmunológicas , Modelos Inmunológicos , Miositis/inmunología , Síndromes Paraneoplásicos/diagnóstico , Síndromes Paraneoplásicos/inmunología , Pronóstico , Factores de RiesgoRESUMEN
OBJECTIVES: Many pediatric cancers are diagnosed in early childhood, a time of significant growth and development that lays the foundations for overall adjustment and functioning. The objective of this article was to characterize the psychosocial functioning of young children with cancer. METHOD: Data from a sample of young children with cancer ( N = 92) who completed a psychological evaluation that included the Behavior Assessment Scale for Children-second edition (BASC-2) parent report were abstracted from the medical record. Patients were primarily White (70.7%), male (54.3%), and 4.81 ± 0.89 years old at evaluation. Most were treated for brain tumors (64.1%). RESULTS: Overall group means on each of the BASC-2 subscales were within normal limits, though significantly more patients than expected had elevated scores on the Internalizing and Behavioral Symptoms indexes. Patients who were on-treatment had higher mean overall Internalizing Problems scores, as well as greater Anxiety and Somatization scores, than those who were off-treatment (Wilks's λ = 0.75, p < .001). Patients treated for brain tumors had lower mean Activities of Daily Living scores than those with other diagnoses ( F = 15.81, p < .001). CONCLUSIONS: Findings from this clinically referred sample indicate that while most young children with cancer are doing well psychosocially, approximately 20% to 30% demonstrated difficulties in at least one area. Findings support the need for monitoring of young children with cancer as well as appropriate intervention services.
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Actividades Cotidianas/psicología , Adaptación Psicológica , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/terapia , Supervivientes de Cáncer/psicología , Conducta Infantil/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Niño , Preescolar , Femenino , Humanos , MasculinoRESUMEN
It is well known that children treated for cancer are at risk for cognitive and functional impairments. Such research is largely based on studies of late effects in school-aged or older children. However, far less is known about executive function weaknesses in preschool-aged children treated for cancer. Thus, the aim of this study was to examine executive functioning in a clinically referred sample of young oncology patients, and its association with broader domains of functioning. Data from 61 young children with cancer, who were referred for clinical cognitive evaluations, were abstracted and included in this study. Patients were 5.00 years of age (SD = 0.72) at assessment, 54.1% male, and two-thirds (63.9%) had been treated for brain tumors. Most executive functions were significantly discrepant from the mean, with 47.5% of preschoolers having parent-reported working memory concerns within the clinically significant range. There were no differences in executive functioning based on diagnosis or treatment status. Parent-reported executive functioning was strongly correlated with global intelligence and adaptive functioning, with some indices also associated with nonverbal problem solving and pre-academic skills. Ultimately, results indicate the presence of emerging weaknesses in executive functioning in young children with cancer, and add to a growing body of literature highlighting the potential cognitive and behavioral risks associated with a cancer diagnosis in early childhood.
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Función Ejecutiva/fisiología , Neoplasias/psicología , Niño , Preescolar , Femenino , Humanos , MasculinoRESUMEN
Survivors of pediatric brain tumor (BT) are known to be at risk for developing cognitive and psychosocial late effects. Young age at treatment (≤6 years) is typically considered to put patients at increased risk. However, there is limited research specifically exploring functioning in these young patients. Cognitive and psychosocial data were retrospectively abstracted from medical charts for 79 young patients (54.4% male) treated for BT with a variety of treatment modalities (e.g., surgery, radiation therapy, chemotherapy). Children were clinically assessed at 4.52 years of age (range = 1.48-5.98) and most were off-therapy (74.4%). Mean performances on developmental (68.3 ± 10.02), cognitive (88.09 ± 18.38), and pre-academic (86.84 ± 19.75) measures were all below average. Parent report of adaptive functioning was also below average (82.10 ± 16.21), but psychosocial functioning was generally within normal limits. Most patients had impaired functioning (scores <10th percentile) in at least one domain assessed. Exploratory analyses revealed that many patients (27.3-60.6%) exhibited a significant discrepancy between domains of cognitive functioning (e.g., verbal and spatial). Young children treated for BT experienced high rates of impairment in cognitive, pre-academic, and adaptive domains. Future work is needed to focus on serial longitudinal assessment of these young patients, as well as dedicated intervention and prevention efforts.
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OBJECTIVE: Most children with cancer are diagnosed in early childhood, potentially resulting in missed developmental opportunities. The most common diagnoses-brain tumors, leukemia-are also associated with increased risk of neurocognitive deficits. Unfortunately, research regarding the functioning of preschool-aged children with cancer is limited. Our objective is to describe the cognitive and psychosocial functioning of preschool-aged children with cancer who completed a clinical evaluation at a hospital-based psychology clinic. METHODS: Assessment data from 98 preschool-aged children with cancer (M = 5.17 years old, SD = 0.54; 54.1% male) who completed clinically referred evaluations from 2011 to 2015 were abstracted. Because of variability in assessment measures used across clinicians, indicators of cognitive, adaptive, preacademic, and emotional/behavioral functioning were collapsed before analyses. RESULTS: Children were 2.56 years from diagnosis (SD = 1.46, range 0-5.25 years) and most were off therapy (79.6%). Primary diagnostic categories were represented: brain tumor (68.4%), solid tumor (15.3%), and leukemia (16.3%). Mean IQ scores were significantly below expectations (t[80] = -7.95, p < .001). There were no differences based on diagnostic category, treatment status, or sex. Adaptive functioning (t[73] = -8.42, p < .001) and preacademic skills (t[77] = -6.20, p < .001) were also significantly below expectations. Mean scores on a measure of parent-reported emotional/behavioral functioning were in the average range. CONCLUSION: Young children with cancer may be at significant risk of deficits in intellectual, adaptive, and preacademic functioning. Although our sample is biased by those who were referred for clinical evaluations, the severity of deficits highlights the potential vulnerability of young patients, even before most have entered formal school. Interventions-such as hospital-based preschool programs to increase preacademic skills-should be designed that explicitly target preschool-aged children and focus on a wide range of domains.
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Éxito Académico , Adaptación Psicológica/fisiología , Conducta Infantil/fisiología , Desarrollo Infantil/fisiología , Cognición/fisiología , Inteligencia/fisiología , Neoplasias , Niño , Preescolar , Femenino , Humanos , Masculino , Neoplasias/psicología , Pruebas NeuropsicológicasRESUMEN
Development of letter naming and writing (skills in writing first name, dictated and copied letters, and dictated and copied numbers) was examined in 79 preschool children (M age = 56 months). Skills were assessed in the fall to determine the status of these procedural skills that are components of alphabetic knowledge at the start of the school year. Children with high letter-naming scores also had high scores on letter writing, including dictated or copied letters and writing some or all of the letters of their names. Letter-naming skills were related to number-writing skills whether the numbers were dictated or copied. The highest writing scores were found for first name writing compared to writing or copying letters and numbers. A focus on the development of procedural knowledge in the preschool period may yield the hopep for impacts on later reading skills that has not been found in curricula emphasizing conceptual knowledge (e.g., knowledge of print concepts, book conventions).
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Desarrollo del Lenguaje , Lectura , Aprendizaje Verbal/fisiología , Escritura , Niño , Preescolar , Femenino , Humanos , Masculino , Fonética , VocabularioRESUMEN
Development of reading skills was examined in 4-year-old children from low-income homes attending a prekindergarten program. Fall to spring gains in letter identification were examined and compared with skills in phonological processing, rhyme detection, and environmental print, and with performance on a screening tool (Get Ready to Read). It was anticipated that participants might show slow skill development. However, the identification of a large group of children (n = 30) who made little or no gains in letter identification compared to their classmates (n = 27), whose gains averaged 7 letters, was not anticipated. Fall to spring gains in letter identification correlated with phonological processing, rhyme detection, environmental print, and Get Ready to Read! scores. Age and general cognitive skills influenced performance on some tasks. More knowledge of the characteristics of children who show the most variations in skill development may lead to insights on using classroom curriculum to focus on skill development.