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22 Adaptive Functioning in 22q11.2 Deletion Syndrome Across the Lifespan: Where are the Social Determinants of Health?
- Karen A Dorsman, Joy Neumann, Mary Hershberger, Kelli N Triplett, Sarah E Messiah, Veronica Bordes Edgar
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- Journal:
- Journal of the International Neuropsychological Society / Volume 29 / Issue s1 / November 2023
- Published online by Cambridge University Press:
- 21 December 2023, pp. 630-631
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Objective:
22q11.2 Deletion Syndrome (22q11DS) is a multi-systemic disorder with great clinical heterogeneity. It is the most common microdeletion syndrome and one of the most common genetic causes of developmental delays (e.g., motor/speech). 22q11DS is estimated to occur between 1/2,000-4,000 live births. However, the diverse clinical presentation of 22q11DS and health inequities that impact ethnically, racially, linguistically, and economically marginalized groups, make early identification, diagnosis, and access to beneficial early interventions (e.g., speech/behavioral therapy) even more challenging. Therefore, 22q11DS’ true prevalence may be larger than documented. Challenges associated with diagnosis, as well as neurocognitive, psychiatric, and medical co-morbidities associated with 22q11DS have been reported to affect the quality of life and well-being of people living with 22q11DS and their families. Yet, there is limited longitudinal data on lifelong functional outcomes of this population and the social factors that may shape them. This study aimed to 1) review the extant literature on adaptive functioning across the lifespan in 22q11DS and 2) report on relevant social and structural variables considered in the literature to contextualize adaptive functioning.
Participants and Methods:A scoping review was conducted between January-June 2022 across six electronic databases: PubMed, Scopus, PsycINFO, Ovid MEDLINE, EBSCO, and Embase. The 'building block’ method was used to identify and design a comprehensive search strategy used to scan publications’ titles, keywords, and abstracts. Citation mining strategy was utilized to identify additional relevant studies. The following inclusion criteria was met: 1) empirical studies conducted in humans, 2) participants with confirmed diagnosis of 22q11DS, 3) evaluation of adaptive functioning, 4) use of at least one standardized measure of adaptive functioning and 5) written or translated into English or Spanish.
Results:Eighty-four records were initially identified. After deduplication, abstract screening, and full record reviews, a total of twenty-two studies met inclusion criteria for this review. Only eight publications explored adaptive skills as one of their primary outcomes. Clinically significant symptoms of anxiety, withdrawal, anhedonia, and flat affect were associated with worse functional outcomes. Fifteen studies reported between one and three demographic variables (e.g., race/ethnicity, years of education), and only two studies documented mental health treatment status/history. Most studies reported lower adaptive abilities in participants with 22q11DS independent from their cognitive abilities, but the majority of participants scored between the below average range and exceptionally low range on measures of intellectual functioning. Nonetheless, information on contextual variables (e.g., educational/occupational opportunities) that may help to interpret these findings was lacking.
Conclusions:Methodological differences (e.g., definition and measurement of adaptive functioning), recruitment bias (small, clinic-based identified samples) and lack of information regarding contextual level factors, may be limiting our understanding of the neurocognitive and neuropsychiatric trajectories of people with 22q11DS. It is vital to increase representative samples in epidemiological/clinical studies, as well as research examining the social and structural factors (e.g., access to healthcare, socioeconomic position) that impact functional outcomes in this population to promote public health policies that can improve brain health across the lifespan.
67 Are these familiar words? Analyzing the utility of a new Spanish verbal memory test for children in North Texas
- Jessica Orobio, Monica Garza Saenz, Ana Hernandez, Angela Canas, Veronica Bordes Edgar, Morgan McCreary, Lana Harder, Joy Neumann
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- Journal:
- Journal of the International Neuropsychological Society / Volume 29 / Issue s1 / November 2023
- Published online by Cambridge University Press:
- 21 December 2023, pp. 742-743
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Objective:
The American Academy of Clinical Neuropsychology’s (AACN) Relevance 2050 Initiative goals highlight the need for new assessment methods that are inclusive of the rising heterogeneous population in the US. In 2022, the Texas Education Agency reported that approximately 20% of the student population in Texas public schools are English learners (ELs), and approximately 90% of them are Spanish-speaking. In an effort to address the need for more Spanish cognitive measures normed in the US, a pediatric neuropsychology research team in North Dallas developed the Spanish Verbal Memory Test for Children (SVMT-C). To assist with establishing its validity, this study aims to corroborate that the words chosen for the list are familiar to children of different cultural backgrounds in North Texas.
Participants and Methods:Enrollment of healthy, Spanish-speaking children between 6.0 and 17.11 years old within the Dallas Fort-Worth (DFW) metroplex began in January 2022 and continues to date. Study participation entails completing an in-person testing session with the child, while the parent/legal guardian completes a word-related survey along with other forms. The parent survey asks parents to indicate their child’s knowledge of 45 words (15 are target words). The testing session with the child includes completion of several cognitive tests (e.g., SVMT-C, EOWPVT-4:SBE) and a posttest survey that measures the child’s knowledge of the target words on the SVMT-C. The EOWPVT-4:SBE was used to estimate vocabulary level in Spanish to support proficiency determinations.
Results:To date, 23 parent-child dyads have participated in the study, and 7 different countries of origin are represented in the overall sample. Data of children who earned SS<85 in Spanish on the vocabulary test were omitted, leaving the pediatric sample at n=20. Ages ranged between 6.2 and 15.2 years old. Eighteen children were bilingual, one was monolingual, and one was multilingual. Only Spanish-speaking parents completed the Spanish Verbal Memory Test Survey, leaving the parent sample at n=21. The child survey revealed that 95% of the children (19 of 20) knew all 15 target words; only one 6-year-old child did not know a word, which contradicted their parent’s report. The parent survey revealed that 90% of parents reported their child knew all 15 target words and 100% of parents reported their child knew 14 of 15 words; only two parents (19 of 21) were unsure if their child knew one of the words but the child then earned a score of 100% on their survey.
Conclusions:Creating a verbal memory measure in Spanish for use in the US presents a set of unique challenges because of the variability in terminology that exists in the language. Lack of familiarity with terminology may influence performance and invalidate results. In this endeavor, the goal was to recognize these nuances and create a relevant measure that uses common words for Spanish-speaking children regardless of cultural background. Thus far, the data supports the appropriateness of the words listed in the SVMT-C with a 100% familiarity rate among children ages 7 to 15 years old.
38 ¿Gustaría participar? - Recruitment of Spanish-speaking families for a pediatric neuropsychology study in North Texas
- Monica Garza Saenz, Jessica Orobio, Joy Neumann, Ana Hernandez
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- Journal:
- Journal of the International Neuropsychological Society / Volume 29 / Issue s1 / November 2023
- Published online by Cambridge University Press:
- 21 December 2023, p. 450
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Objective:
Hispanics account for approximately 19% of the US population and are the second largest ethnic group in the United States, yet they remain underrepresented in neuropsychology research. Common recruitment barriers include language, fear/mistrust, and unfamiliarity with neuropsychology. These recruitment challenges then interfere with the development of measures normed on Spanish-speaking Hispanics. The research team for a Spanish-based neuropsychological study at a pediatric medical setting in North Texas utilized several methods to maximize recruitment of Hispanics and identify the most successful strategies. It was hypothesized that internal recruitment efforts would have the best outcome.
Participants and Methods:Recruitment of healthy Spanish-speaking children between 6.0 and 17.11 years old began in October 2021 and continues to date. Participants have been recruited within the Dallas Fort-Worth (DFW) metroplex using internal efforts within the pediatric medical center and external efforts in the community-at-large. Internal recruitment efforts have included: 1) setting up flyers at 19 different ambulatory clinics, 2) emailing study flyer to several internal groups, and 3) sharing information during a Hispanic workgroup meeting. Community-based efforts have included collaborating with: 1) a Spanishimmersion private elementary school (i.e., shared information with parents via email and sent flyers home with students), 2) three mental health colleagues (i.e., displayed study flyers within their clinic space and promoted study through word-of-mouth), 3) a local city council (i.e., featured flyer in electronic newsletter), and 4) a non-profit community organization (i.e., shared information and flyer through mass-text messages, social media post, and mass email to subscribers).
Results:To date, 74 parent-child pairs have made one-time contact with the research team to inquire about the study and 55 have completed a second contact with initial screener by phone (19 lost to follow up). Of the screened families, 58% heard of the study through the non-profit organization, 31% through the Spanish-immersion private school, and 11% from internal recruitment efforts.
Conclusions:Although we hypothesized that internal -based recruitment within the medical institution would be most fruitful, our findings did not support this hypothesis. A possible explanation could be that children recruited from medical clinics may not meet criteria for participation in our study (i.e., healthy children). Another possible reason may be that flyer-based recruitment in a medical clinic is too passive or impersonal. Recruitment through community organizations with sources known and trusted by participants was found to be the most successful method to recruit potential participants. Considering these findings, our approach to recruitment will move away from passive and indirect methods of recruitment (i.e., flyers in clinics) and emphasize alliance with community-based organizations to promote trust building and collaborative relationships between researchers, community organizations, and Hispanic research participants.
Dead Sea Levels during the Bronze and Iron Ages
- Elisa Joy Kagan, Dafna Langgut, Elisabetta Boaretto, Frank Herald Neumann, Mordechai Stein
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- Journal:
- Radiocarbon / Volume 57 / Issue 2 / 2015
- Published online by Cambridge University Press:
- 09 February 2016, pp. 237-252
- Print publication:
- 2015
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The history of lake-level changes at the Dead Sea during the Holocene was determined mainly by radiocarbon dating of terrestrial organic debris. This article reviews the various studies that have been devoted over the past 2 decades to defining the Dead Sea levels during the Bronze and Iron Ages (≃5.5 to 2.5 ka cal BP) and adds new data and interpretation. In particular, we focus on research efforts devoted to refining the chronology of the sedimentary sequence in the Ze'elim Gully, a key site of paleoclimate investigation in the European Research Council project titled Reconstructing Ancient Israel. The Bronze and Iron Ages are characterized by significant changes in human culture, reflected in archaeological records in which sharp settlement oscillations over relatively short periods of time are evident. During the Early Bronze, Intermediate Bronze, Middle Bronze, and Late Bronze Ages, the Dead Sea saw significant level fluctuations, reaching in the Middle Bronze an elevation of ≃370 m below mean sea level (bmsl), and declining in the Late Bronze to below 414 m bmsl. At the end of the Late Bronze Age and upon the transition to the Iron Age, the lake recovered slightly and rose to ≃408 m bmsl. This recovery reflected the resumption of freshwater activity in the Judean Hills, which was likely accompanied by more favorable hydrological-environmental conditions that seem to have facilitated the wave of Iron Age settlement in the region.