Neuropsychological assessment in rare pediatric neurogenetic disorders: considerations for cross-cultural clinical research.

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.

Foundational Curriculum and Core Guidelines for Training in Latinx/a/o-Hispanic Cultural Neuropsychology Across the Lifespan.

OBJECTIVE: The training competency of individual and cultural diversity is an advanced, fundamental competency to health service psychology since 2015. However, there is minimal instruction on how to integrate it into training curricula in neuropsychology, especially at the postdoctoral fellowship level. Our objective was to operationalize the individual and cultural diversity standard to provide a tangible application for educational programs on how to develop a competency-based training model for Latinx/a/o-Hispanic (L/H) cultural neuropsychology across the lifespan. METHOD: The knowledge-based and applied-based competencies necessary to train to be a cultural neuropsychologist delivering services to L/H patients and families are defined. For learners to complete these competencies, training programs need to implement clinical, didactic, research, and professional development core guidelines grounded in cultural neuropsychology. We provide a framework on how to transform each core guideline, including a Didactics Core with foundational readings across a range of L/H topics, and a Report Template to guide the documentation of sociocultural information, language usage, normative data, and other relevant factors in a neuropsychological report. CONCLUSIONS: These cultural neuropsychology competencies and core guidelines need to become a basic core requirement for all neuropsychologists in training. With focused education in culturally based competencies, training programs can cultivate a sense of responsibility, inclusion, justice, and equity to train a generation of neuropsychologists, who intentionally and consistently practice socially responsible neuropsychology.

Cultivating a Relevant Supervisory Space: Culturally Expressive and Responsive Model for Supervision in Neuropsychology.

OBJECTIVE: Provision of supervision is an integral component of training in psychology, a view that was solidified in 2014 with the development of the American Psychological Association created Guidelines for Clinical Supervision in Health Service Psychology ( APA, 2014). Current supervisory standards require several components before a relationship is considered supervisory. Among these are assumptions that the supervisory relationship is respectful and collaborative, that feedback is bidirectional, and that it focuses on the development of competency and professional identity by the supervisee. Although clinical and counseling psychology has created supervision models with a variety of different theoretical orientations focused on multiculturalism, neuropsychology as a specialty lacks cohesive, culture-centric, bidirectional supervisory models. METHOD: A systematic review of two electronic databases (PubMed and PsycInfo) was conducted to search for supervision models designed specifically for training in neuropsychology. RESULTS: A new model for supervision in neuropsychology was developed, coined the Culturally Expressive and Responsive (CER) Model for Supervision in Neuropsychology. The model is dynamic, multifaceted, and bidirectional, integrating sociocultural and linguistic considerations throughout the supervisory relationship. CONCLUSIONS: The different facets of the CER Model are discussed, including its place embedded within a larger equitable healthcare model designed to increase healthcare equity. The CER Model highlights the bidirectional supervisory relationship and is designed to be tailored to the developmental level of the learner, encouraging high quality training and evidenced-based practice. Furthermore, the model encourages a process of identity development that is ongoing and emphasizes self-evaluation and cultural humility rather than a static sense of "competence."

The Measurement of Acculturation in Neuropsychological Evaluations of Hispanic/Latino Individuals across the Lifespan: A Scoping Review of the Literature.

OBJECTIVE: Acculturation has been linked to health outcomes in Hispanics/Latinos (H/Ls). However, there is equivocal evidence of a relationship between acculturation and neuropsychological outcomes. Various factors limit the ability to subject the evidence to systematic/meta-analytic review. We sought to examine the current state of the literature in the context of H/Ls and neuropsychology and describe the various limitations of measuring acculturation across the lifespan. METHOD: Applying a scoping review approach, we identified unique stand-alone (e.g., questionnaires) measures of acculturation. We focused on psychometric (e.g., internal consistency) and other characteristics (e.g., language, structure/format) and description of the validation samples (e.g., cultural background/country of origin). RESULTS: A total of 40 unique acculturation measures were identified. Measures spanned various domains (e.g., language proficiency, food preference, music choice), and relied heavily on linguistic behavioral characteristics. Internal consistency varied from unacceptable to clinically acceptable ranges. Variable approaches to development and validation were reported. Validation samples varied from 22 to 2,048 respondents (median = 380), most of which represented a general adult population. Only eight measures were validated for use in pediatric populations; none were developed specifically for use with older adults. CONCLUSIONS: Published measures are outdated, evidence highly variable psychometric and methodological weaknesses, and lack a lifespan perspective. Several themes in the types of items considered elemental to the acculturative process are revealed and findings are summarized via an "ABC" framework, categorizing items as antecedents, behaviors, and consequent acculturative changes, that lends itself to clinical and research settings.

Culturally Informed Neuropsychological Evaluations in Pediatric Epilepsy: Evidence-Based Practice Considerations.

OBJECTIVE: Epilepsy is one of the most common reasons for referral for a pediatric neuropsychological evaluation due its high prevalence in childhood and our well-established clinical role in tertiary care settings. Emerging evidence indicates that racial and ethnic minority populations experience increased epilepsy burden compared with White peers. Although there has been heightened recognition in our specialty regarding the dire need for culturally and linguistically responsive evaluations, the scientific evidence to support effective neuropsychological service delivery for bi/multilingual and bi/multicultural youth with epilepsy is comparatively scant and of poor quality. As a result, significant patient and clinical challenges exist, particularly in high stakes presurgical pediatric epilepsy evaluations of bi/multilingual and bi/multicultural children. METHOD: Given that Spanish is the most common language spoken in the United States after English, this paper will focus on Spanish and English measures, but will provide evidence-based practice considerations that can inform practices with other non-English speaking communities. Cultural and linguistic factors that affect clinical decision-making regarding test selection, test interpretation, and feedback with families are highlighted. RESULTS: We offer a review of neuropsychological profiles associated with pediatric epilepsy as well as a flexible, multimodal approach for the assessment of linguistically and culturally diverse children with epilepsy based on empirical evidence and the clinical experiences of pediatric neuropsychologists from diverse backgrounds who work with children with epilepsy. CONCLUSION: Limitations to this approach are discussed, including the lack of available measures and resources for culturally and linguistically diverse pediatric populations. A case illustration highlights a culturally informed assessment approach.

Neurodevelopmental Implications on Urological Self-management Among People Living With Spina Bifida: A Practical Guide for Urology Providers.

Although folic acid fortification and advances in prenatal repair have reduced Spina Bifida (SB) prevalence and the severity of comorbidities, individuals with SB remain at elevated risk for neurocognitive impairments that studies have shown can negatively impact, among other things, urological self-care. Identifying and addressing these impairments with practical interventions can meaningfully improve long-term outcomes for individuals with SB. We review neurocognitive impairments associated with SB and provide practical solutions to support improvement of long-term urological outcomes.

Do parents implement pediatric neuropsychological report recommendations?

OBJECTIVE: We explored parent-reported implementation rates of medical, home/community, and school recommendations following a pediatric neuropsychological evaluation, as well as demographic group differences in, and potential barriers to, recommendation implementation. METHOD: Participants were 55 parents of children and adolescents who completed an outpatient neuropsychological evaluation in a university-based hospital neuropsychology clinic within 4 to 6 months prior to study participation. Participants were contacted by phone to complete a short interview regarding implementation of report recommendations. RESULTS: Slightly over half (52%) of all recommendations were implemented, with higher implementation rates of school (62%) and home/community recommendations (53%) than medical recommendations (40%). Results indicated significantly lower recommendation implementation for households with low income (particularly for medical recommendations). Reported reasons for not implementing recommendations included lack of time, lack of resources (geographical and financial), ambivalence about the need to implement the recommendation, not remembering the recommendation, confusion about how to implement the recommendation, and resistance from schools and teachers. CONCLUSIONS: The results for this study provide information for pediatric neuropsychologists regarding rates of recommendation implementation, with differences identified based on type of recommendation and demographic factors. Further empirical investigation is indicated in order to determine practical, concrete steps to improve recommendation implementation.

A Teleneuropsychology Consultation Service Model for Children with Neurodevelopmental and Acquired Disorders Residing in Rural State Regions.

OBJECTIVE: Accessing neuropsychological services, which are often centralized in urban regions, poses unique challenges to children and families in rural regions. In 2017, urban neuropsychologists and a pediatrician practicing in a rural region of New Mexico started to develop a teleneuropsychology (TeleNP) consultation service model to efficiently triage and determine a clinical course of action. This pilot project, aimed at expanding clinical access to specialized pediatric services in rural areas, evolved over the course of 2 years prior to the coronavirus disease 2019 pandemic. METHOD: Providers earned the trust of the local community, gained understanding of pertinent sociocultural factors, and acquired knowledge of the clinical and educational concerns for the children residing in the rural community. The application of a culturally informed approach that highlights the importance of community participation and collaboration steered the decision to implement a TeleNP consultation model. By widening access to neuropsychology, this service helped to determine whether neuropsychological testing procedures were medically indicated. RESULTS: We summarize the distinct processes that needed to occur at each location to support the implementation of telemedicine. We propose a clinical service decision tree with specific criteria to help guide providers on how to triage cases in order to increase access to specialized healthcare. CONCLUSION: The success of implementing a TeleNP consultation service hinges upon ongoing care coordination between providers, clerical staff, patients, and families with clear goals and expectations, maintenance of legal and ethical standards, and development of specific administrative and clinical processes supporting the use of TeleNP.

Cross-Country Differences in Parental Reporting of Symptoms of ADHD.

Previous studies within the United States suggest there are cultural and contextual influences on how Attention-Deficit/Hyperactivity Disorder (ADHD) symptoms are perceived. If such influences operate within a single country, they are likely to also occur between countries. In the current study, we tested whether country differences in mean ADHD scores also reflect cultural and contextual differences, as opposed to actual etiological differences. The sample for the present study included 974 participants from four countries tested at two-time points, the end of preschool and the end of 2nd grade. Consistent with previous research, we found lower mean ADHD scores in Norway and Sweden in comparison to Australia and the United States, and we tested four explanations for these country differences: 1) Genuine etiological differences, 2) Slower introduction to formal academic skills in Norway and Sweden than in the United States and Australia that indicated a context difference, 3) Under-reporting tendency in Norway and Sweden, or 4) Over-reporting tendency in the United States and Australia. Either under-or over-reporting would be examples of cultural differences in the perception of ADHD symptoms. Of these explanations, results of ADHD measurement equivalence tests across countries rejected the first three explanations and supported the fourth explanation: an over-reporting tendency in the United States and Australia. These findings indicate that parental reporting of ADHD symptoms is more accurate in Norway and Sweden than in Australia and the United States, and thus have important clinical and educational implications for how parental reporting informs an ADHD diagnosis in these countries.

Cognitive and behavioral indicators of ADHD symptoms prior to school age.

BACKGROUND: Previous research on the etiology of ADHD symptoms suggests that neuropsychological differences may be present as early as birth; however, the diagnosis is typically not given until school age. This study aimed to (a) identify early behavioral and cognitive markers of later significant parent and/or teacher ratings of ADHD symptomology, (b) examine sex differences in these predictors, and (c) describe the developmental trajectories of comorbid symptoms in school-aged children. METHODS: 1,106 children and at least one parent enrolled in the NICHD Study of Early Child Care and Youth Development were followed from 1 month of age through 6th grade. Effect size calculations, discriminant function analysis, and growth curve analyses were conducted to address the three aims. RESULTS: Children with high- versus low-ADHD symptomology at 3rd grade could be distinguished using cognitive and behavioral measures as early as 15 months (females) and 24 months (males). Sensitivity and specificity were modest at 15, 24, and 26 months. Growth curves revealed significant differences between high- and low-ADHD groups in comorbid symptoms at kindergarten and significantly different slopes for externalizing, social skills, and academic skills ratings across elementary school. There were few gender differences on cognitive and behavioral variables within the high-ADHD group. CONCLUSIONS: Cognitive and behavioral markers of ADHD symptoms are present in children prior to entry into formal schooling, but current behavioral screeners are not developmentally sensitive to these differences in infancy and toddlerhood.

Individual prediction of dyslexia by single versus multiple deficit models.

The overall goals of this study were to test single versus multiple cognitive deficit models of dyslexia (reading disability) at the level of individual cases and to determine the clinical utility of these models for prediction and diagnosis of dyslexia. To accomplish these goals, we tested five cognitive models of dyslexia--two single-deficit models, two multiple-deficit models, and one hybrid model--in two large population-based samples, one cross-sectional (Colorado Learning Disability Research Center) and one longitudinal (International longitudinal Twin Study). The cognitive deficits included in these cognitive models were in phonological awareness, language skill, and processing speed and/or naming speed. To determine whether an individual case fit one of these models, we used two methods: 1) the presence or absence of the predicted cognitive deficits, and 2) whether the individual's level of reading skill best fit the regression equation with the relevant cognitive predictors (i.e., whether their reading skill was proportional to those cognitive predictors.) We found that roughly equal proportions of cases met both tests of model fit for the multiple deficit models (30-36%) and single deficit models (24-28%); hence, the hybrid model provided the best overall fit to the data. The remaining roughly 40% of cases in each sample lacked the deficit or deficits that corresponded with their best-fitting regression model. We discuss the clinical implications of these results for both diagnosis of school-age children and preschool prediction of children at risk for dyslexia.