Executive Functioning and School Performance among Pediatric Survivors of Complex Congenital Heart Disease.

OBJECTIVE: To investigate the presence and severity of real-world impairments in executive functioning-responsible for children's regulatory skills (metacognition, behavioral regulation)-and its potential impact on school performance among pediatric survivors of complex congenital heart disease (CHD). STUDY DESIGN: Survivors of complex CHD aged 8-16 years (n = 143) and their parents/guardians from a regional CHD survivor registry participated (81% participation rate). Parents completed proxy measures of executive functioning, school competency, and school-related quality of life (QOL). Patients also completed a measure of school QOL and underwent IQ testing. Patients were categorized into 2 groups based on heart lesion complexity: 2-ventricle or single-ventricle. RESULTS: Survivors of complex CHD performed significantly worse than norms for executive functioning, IQ, school competency, and school QOL. Metacognition was more severely affected than behavioral regulation, and metacognitive deficits were more often present in older children. Even after taking into account demographic factors, disease severity, and IQ, metacognition uniquely and strongly predicted poorer school performance. In exploratory analyses, patients with single-ventricle lesions were rated as having lower school competency and school QOL, and patients with 2-ventricle lesions were rated as having poorer behavioral regulation. CONCLUSIONS: Survivors of complex CHD experience greater executive functioning difficulties than healthy peers, with metacognition particularly impacted and particularly relevant for day-to-day school performance. Especially in older children, clinicians should watch for metacognitive deficits, such as problems with organization, planning, self-monitoring, and follow-through on tasks.

Impact of text difficulty and visual emphasis on pediatric neuropsychological evaluation reports: The parent's perspective.

Objective: Despite varying opinions, little research has examined how to best write pediatric neuropsychology reports. Method: This study gathered input from 230 parents on how text difficulty (reading level) and visual emphasis (bullets, underline, italics) affect report readability and utility. We focused on the most-read report section: summary/impressions. Each parent rated the readability and usefulness of a generic summary/impressions section written in four different styles. The four styles crossed text difficulty (high school-vs-collegiate) with use of visual emphasis (absent-vs-present). Results: Parents found versions with easier text to be more clearly written, easier to follow, and easier to find information (p<.001). Parents rated those with harder text to be overly detailed, complex, hard to understand, and hard to read (p<.001). Visual emphasis made it easier to find key information and the text easier to follow and understand - but primarily for versions that were written in difficult text (interaction p≤.026). After rating all four styles, parents picked their preference. They most often picked versions written in easier text with visual emphasis (p<.001). Conclusions: Findings support writing styles that use easier text difficulty and visual emphasis.

Improving Anxiety Screening in Patients with Turner Syndrome.

INTRODUCTION: Turner syndrome (TS) results from a complete or partial loss of the X chromosome and affects 25-50 per 100,000 females. These individuals have characteristic neurocognitive and psychological profiles with an increased lifetime prevalence of mood disorders, such as depression and anxiety. Consensus guidelines recommend the use of psychometrically robust tools to screen for these conditions [Eur J Endocrinol. 2017;177(3):G1-G70 and Gynecol Endocrinol. 2004;19(6):313-9]. We propose a sustainable and informative approach to routine anxiety screening in individuals with TS and describe the prevalence of anxiety, genotype-phenotype associations, and impact of comorbidities on anxiety. METHODS: We pilot the use of a self-administered version of the validated Pediatric, Parent Proxy, and Adult Patient-Reported Outcomes Measurement Information System (PROMIS®) Anxiety tool during routine visits to the Cincinnati Children's Hospital Medical Center (CCHMC) TS clinic from October 2019 to March 2020. RESULTS: Ninety-two eligible TS females, ages 8-62 years, received the PROMIS® Anxiety measure. Elevated anxiety scores, ≥1 standard deviation above the T-score mean, were present in 65% of patients (38% mild, 19% moderate, and 8% severe). Results were discussed during the clinic visit, and referral for further evaluation and treatment was offered. There was no apparent genotype-phenotype association among females with anxiety; however, there appeared to be elevated anxiety symptoms (T-score >60) in those with hearing deficits and also in individuals with three or more medical comorbidities. Of the 55% of patients who filled out the acceptability survey, 88% found the process helpful and ∼50% felt that screening should be performed at least every 6 months. CONCLUSION: Our study demonstrated a high prevalence of anxiety symptoms within a cohort of 92 females with TS. In alignment with current guidelines, these findings indicate the importance of routine neuropsychological assessments for timely recognition and subsequent management of anxiety, especially as milder presentations may otherwise go unnoticed. We have shown that screening tools, such as the PROMIS® Anxiety measure, can be easily utilized by nonmental health care providers (i.e., endocrinologists) who may see TS patients more frequently and be able to initiate impactful discussions surrounding mental health and further referral to subspecialists for expert management.

Changes in child functioning pre-to post-neuropsychological evaluation.

Although a key goal of neuropsychological evaluation is to improve patient outcomes, research regarding changes in child functioning following neuropsychological evaluation is very limited. This project examined changes from before neuropsychological evaluation to several months afterward in parent report of their child's functioning and ability to participate across home, school, and community settings. Fifty-one parents of children and adolescents receiving their first outpatient neuropsychological evaluation completed questionnaires prior to initial parent interview and following the final report (of n = 162 who were mailed the follow-up questionnaire). Parents rated their perception of the severity of their child's problems, their child's ability to participate, and satisfaction with the child's ability to participate across school, home, and community domains. Analysis utilized MANOVA with bootstrapping to obtain standard errors and false discovery rate to control Type-1 errors. Parents reported a significant decrease in the severity of problems related to academic progress (p = .034) and overall severity of problems (p = .028) at follow-up. There was no significant change in the rated severity of the child's problems with peers or family. Parents reported significant increases in their child's ability to participate, and parent satisfaction with child participation, in school (ps<.001), at home (ps<.01), and in the community (ps<.001). Although this observational study cannot definitively show cause-and-effect, findings support the utility of pediatric neuropsychological evaluations in facilitating child functioning. These findings dovetail with prior work suggesting that such evaluations can increase parents' understanding of their child, awareness of care options, and efficacy in pursuing those options.

Evolution of parental knowledge and efficacy across the pediatric neuropsychological evaluation process.

OBJECTIVE: The handful of studies examining parent satisfaction after pediatric neuropsychological evaluations have focused on post-evaluation appraisals. By examining parent experiences across the course of their child's evaluation, this study aimed to provide important insights into how and when parents experience changes in knowledge, understanding of care options, and efficacy during evaluation process. METHOD: Parents of youth receiving neuropsychological evaluation completed questionnaires at four time points (prior to evaluation [n = 363], day of testing [n = 300], prior to feedback [n = 250], and post-report [n = 99]). Parents rated aspects of their knowledge and efficacy regarding their child's functioning. Parents also rated their perception of the neuropsychologist, medical provider, and school along the same domains. The resulting longitudinal data were analyzed using structural equation modeling and ANCOVA. Although primary analyses focused on the entire sample, differences between first-time evaluations and re-evaluations were also examined. RESULTS: Families receiving an initial evaluation showed lower ratings in knowledge, awareness of options, and efficacy at the beginning of the evaluation and a significant increase in ratings by the end of the evaluation. Families returning for re-evaluation showed higher initial ratings that changed comparatively little during the evaluation. Parents receiving initial evaluations also perceived increased knowledge of their child by medical providers and school. CONCLUSION: The study supports the clinical assumption that parents gain knowledge about their child and treatment options during a neuropsychological evaluation. The difference between initial and re-evaluation warrants further study. Studying the process and experience of neuropsychological evaluation may provide more nuanced findings than post hoc satisfaction measures.

Repressive adaptive style and self-reported psychological functioning in adolescent cancer survivors.

Low levels of posttraumatic stress disorder (PTSD), posttraumatic stress symptoms (PTSS), and psychosocial distress have been reported in pediatric cancer survivors. One explanation is the relatively high prevalence of the repressive adaptive style (low distress, high restraint) in this population. We investigated the relationship between this adaptive style and PTSD, PTSS, and psychosocial functioning in 29 adolescent cancer survivors (12 through 18 years). Adolescents categorized as repressors (n = 14) reported moderate/large effect size differences in PTSD, PTSS, and psychosocial distress (lower) as well as QOL (better) compared to non-repressors. Furthermore, repressors reported less PTSD and QOL variability. Thus, the repressive adaptive style, pronounced in this population, may obscure systematic and clinically meaningful adaptive style group differences across psychological measures.

Communication is key: the utility of a revised neuropsychological report format.

OBJECTIVE: The neuropsychological report is a critical tool for communicating evaluation results to multiple audiences who have varying knowledge about neuropsychology and often have limited ability to review long, complex reports. Considerable time is spent writing these reports and challenges persist related to readability, length/complexity, and billable clinical time (which may be capped by third-party payors or families' ability to pay). METHODS: This quality improvement effort systematically evaluated the redesign of pediatric neuropsychological reports in an outpatient clinic serving primarily medical populations. RESULTS: Revised reports were shorter, with improved readability, structure, and effectiveness in communicating results and recommendations. Improved clinical efficiency was also observed. CONCLUSIONS: We suggest that adaptation to efficient, readable, and effective reports is possible within the practice of neuropsychology. Findings encourage replication in other settings. Through collaboration with key stakeholders, providers can identify their populations' and audience's unique needs and set report targets accordingly. To encourage that practice, we summarize our general process, provide a set of guidelines that can be adapted across multiple settings, and include an appended sample report.

Developmental considerations in measuring children's disordered eating attitudes and behaviors.

This study examined the discriminant ability of the Children's version of the Eating Attitudes Test (ChEAT) clinical cut-off in a low/low-middle socioeconomic status, non-clinical sample of primarily Hispanic and non-Hispanic white (Caucasian) girls aged 8 to 12. We investigated how age, age-standardized body mass index (z-BMI), body dissatisfaction, body esteem, self-esteem, and depressive symptoms contributed to disordered eating status in 152 girls. Girls scoring at/above the ChEAT clinical cut-off reported significantly greater body dissatisfaction and depressive symptoms and lower body esteem than did girls who scored below the cut-off. We then investigated whether age moderated the discriminant ability of the ChEAT threshold and found that the ChEAT was significantly more sensitive when our sample was limited to 10- to 12-year-olds. An abbreviated 6-item ChEAT scale, based on marker items distinguishing at-risk and non-clinical status, was subsequently developed. Findings indicate that this abbreviated ChEAT scale has improved sensitivity with older girls (10- to 12-year-olds). However, sensitivity was unacceptable for younger girls (8- and 9-year-olds) for both the ChEAT and abbreviated ChEAT scale, regardless of cut-off.

Adolescent cancer survivors' posttraumatic stress symptoms: Concordance between self-report and maternal-proxy report.

Subsyndromal posttraumatic stress among pediatric cancer survivors has been associated with negative physical and mental health outcomes. However, adolescent self-report and mother-proxy report of adolescents' posttraumatic stress symptoms evidenced varying concordance depending on methodology. There was moderate concordance, particularly among younger respondents, when total posttraumatic stress symptoms were viewed continuously and low-moderate concordance when viewed categorically; moderate-strong concordance for only one posttraumatic stress disorder symptom cluster; low-moderate agreement for high-frequency items; and no concordance for identifying caseness. Although a significant subset of pediatric cancer survivors experience posttraumatic stress, mothers and adolescents demonstrate limited symptom, categorical, and caseness agreement, potentially impacting adolescents' healthcare service utilization.

Preliminary examination of a mutual intimate partner violence intervention among treatment-mandated couples.

Intimate partner violence (IPV) is a widespread global health problem. Despite growing evidence indicating that men and women commit IPV, most traditional interventions focus on male-to-female violence and do not address mutual violence. This circumscribed focus represents one potential reason traditional treatments have had only a modest effect on recidivism. The current study investigated a pilot intervention for mutually violent couples with ethnically diverse, treatment-mandated men and women. Using a longitudinal design, 121 couples were assessed (semistructured clinical interview, Conflict Tactics Scale-Revised [CTS-2]) and mandated to either the pilot intervention or another community agency. Of the 92 couples referred for the 12-week, pilot group intervention (plus 1-2 preparatory, individual sessions), 89% of couples had one or both partners complete. Posttreatment assessments were conducted (CTS-2, satisfaction ratings), anticipating reductions in perpetrated and received IPV among treatment completers. Using 1-year conviction data to assess recidivism (IPV and general violence convictions), it was hypothesized that the lowest recidivism rates would be found when both partners completed, intermediate rates when one partner completed, and the highest rates when neither completed. Consistent with hypotheses, men who completed treatment reported reduced perpetration of physical assault and received less injury, and women who completed reported receiving less physical assault and injury. At 1-year follow-up, couples who completed had lower recidivism rates, with couples in which both partners completed evidencing the best outcomes. Results provide preliminary support for the proposed mutual violence intervention. Clinical implications, including the effect of a thorough assessment and tailored treatment recommendations, are discussed.

Health-related quality of life in children with moderate-to-severe traumatic brain injury.

OBJECTIVE: To investigate health-related quality of life (HRQOL) in a sample of ethnically diverse children with traumatic brain injury (TBI). METHODS: Twenty children with moderate-severe TBI and their parents were recruited from a TBI clinic at a paediatric rehabilitation hospital. Children's self-reported HRQOL was assessed with the Pediatric Quality of Life Inventory. Parents completed a parallel proxy measure. RESULTS: Children reported significantly lower Psychosocial HRQOL compared to their Total HRQOL, driven largely by low School HRQOL scores. Compared to other paediatric populations, children with TBI reported lower or equivalent HRQOL. Compared with children's self-reports, parents reported even lower HRQOL for their children across primary domains, with fair-to-moderate convergence between informants. CONCLUSIONS: Results provide preliminary evidence that children who have suffered moderate-severe TBI experience relatively poor HRQOL, particularly in the School domain. Limited convergence between informants suggests that children and parents perceive HRQOL differently, with parents reporting lower HRQOL.

Investigation of ethnic differences in body image between Hispanic/biethnic-Hispanic and non-Hispanic White preadolescent girls.

The extent to which the construct of body image is measurement invariant across ethnic groups is an important consideration for studies examining ethnic differences and characteristics that influence body image disturbances. However, the literature examining the body image construct as a function of ethnic group membership is limited. The primary aim of this study was to investigate whether Hispanic/biethnic-Hispanic and non-Hispanic White preadolescent girls (aged 8 through 12 years old; N=141) had fundamentally different conceptualizations of body image in a low to low/middle socioeconomic status school-based sample. Our findings suggest that the measurement construct of body image was similar and relatively stable for Hispanic/biethnic-Hispanic and non-Hispanic White preadolescent girls. In addition, the body image construct was predictably related to disordered eating symptoms in both groups, with different dimensions of body image differentially predictive by ethnic group. Overall, body image appears to be a meaningful construct with similar measurement meanings across Hispanic/biethnic-Hispanic and non-Hispanic White ethnic groups.

Depressive deficits in forgetting.

The aim of this study was to investigate whether difficulties in forgetting (like difficulties in remembering) are associated with depressive states. First, dysphoric and nondysphoric students learned 40 word pairs, each consisting of a positive or negative adjective and a neutral noun (target). Next, the students practiced responding with some targets and suppressing others, when given the adjective as cue, for a varied number of repetitions. On the final test, they were told to disregard the prior instruction to suppress and to recall the target associated with every cue. Compared with nondysphoric students, dysphoric students recalled similar percentages of targets from sets assigned for response practice but higher percentages from sets assigned for suppression practice. The degree of forgetting showed some mood-congruent tendencies and was significantly correlated with self-report measures of rumination and unwanted thoughts.