Grayson N. Holmbeck’s research while affiliated with Loyola University Chicago and other places

Purpose Hydrocephalus management in myelomeningocele (MMC) patients remains controversial. While most institutions recommend surgical intervention for enlarged ventricles, recent studies suggest asymptomatic ventriculomegaly may not require treatment. This study compared cognitive outcomes in MMC patients from different institutions with different hydrocephalus intervention rates. Methods Participants with MMC were recruited from two sites: Site 1 (Chicago area; N = 41; selective shunting protocol) and Site 2 (Houston and Toronto; N = 342; historical approach to hydrocephalus management). The 41 Site 1 patients were matched to 41 participants from Site 2 based on age, gender, lesion level, and race. Neuropsychological testing assessed various cognitive domains. Independent samples t-tests compared outcomes between sites. Results Site 1 had significantly lower shunt rates (55% shunt rate at Site 1; 83% shunt rate at Site 2). There were no significant differences in demographics or lesion levels between sites. Site 1 participants demonstrated significantly higher scores on several cognitive measures compared to Site 2, including the Purdue Pegboard (fine motor dexterity; p = 0.042), Stanford-Binet Quantitative Reasoning (quantitative reasoning to solve mathematical problems; p = 0.030), VMI (visuomotor integration; p = 0.034), WJ Letter-Word Identification (single-word reading; p = 0.026), and WJ Calculation subtests (math calculation problem-solving; p = 0.012). Conclusion Neuropsychological outcomes were either similar across cohorts from institutions with different shunt rates or favored the clinic with the lower shunting rate. These findings suggest asymptomatic ventriculomegaly may not be associated with worse functional outcomes, potentially informing guidelines for hydrocephalus intervention in the MMC population.

Objective To evaluate associations between peer relationship factors (i.e., quality and quantity) and mental and physical health outcomes in youth with spina bifida (SB). Methods One hundred and forty youth with SB (Mage = 11.43; 53.6% female) were recruited as part of a larger longitudinal study. Families of youth with SB were invited to ask the child’s closest friend to participate. The study included questionnaire (youth- and parent-report) and observational peer interaction data. Results Observational peer interaction data were associated with mental and physical health in youth with SB. The number of friends was negatively associated with withdrawn/depressed behavior. Self-reported friendship quality and peer emotional support were not associated with physical health outcomes in youth with SB. However, peer emotional support was positively associated with emotional quality of life. Conclusions Friendship quality, particularly observed peer interaction characteristics, was associated with better mental and physical health adjustment. The quantity of friendships was not associated with physical health outcomes but was associated with mental health outcomes. Findings have implications for clinical interventions geared toward improving social functioning in youth with SB.

Youth with spina bifida (SB) are at increased risk for inattention and executive dysfunction challenges. This study aimed to characterize the development of inattention and executive dysfunction in SB and examine the relationship between condition severity (i.e. lesion level, shunt status, and shunt revisions) and inattention and executive dysfunction at age 11.5 and longitudinally. Participants included 140 youth with SB. Condition severity was collected via parent reports and chart review. Parents and teachers reported on youth's inattention and executive dysfunction using informant-based measures across five time points. Parents and teachers both reported linear decreases in inhibition and working memory problems. Development of inattention and shifting problems varied by reporter. At 11.5 years, shunt status predicted worse parent- and teacher-reported inattention and executive dysfunction, while shunt revisions predicted worse parent-reported working memory alone. Higher lesion level predicted fewer parent-reported inhibition problems at 11.5 years. Over time, more shunt revisions and higher lesion level predicted worse parent-reported inattention and inhibition, respectively. Findings suggest that inattention and executive dysfunction may significantly change over time in youth with SB, related to condition severity and reporter. Early deficit identification and intervention implementation, particularly for youth with greater SB severity, may result in better longitudinal outcomes.

Objective Benefit-finding and growth is an important process across a range of medical populations. However, it has been understudied in the context of lifelong chronic conditions, such as spina bifida (SB). This study aimed to develop a new measure of benefit-finding and growth for youth with SB, confirm its factor structure, and examine its psychometric properties. Method To generate items for the new measure, 20 adolescents and young adults with SB completed qualitative interviews regarding their experience of living with SB. Interviews were coded for benefits. Questionnaire items were generated from these benefits, and an expert panel refined the wording of these items. The resultant 31-item measure was shared with six of the 20 participants for feedback and then piloted among 251 youth with SB. The factor structure of the measure was confirmed and reliability and convergent validity were assessed. Results Both a one- and four-factor structure were supported. The four factors include: Life Perspectives and Priorities, Personal Characteristics and Traits, Connections and Opportunities, and Problem Solving. Higher total and factor scores represent greater benefit-finding and growth. The measure demonstrated excellent internal consistency (α = 0.95). The new measure also showed significant positive correlations with optimism, positive affect, and life satisfaction. Conclusions This study produced a measure of benefit-finding and growth for youth with SB. Clinically, information about what youth with SB perceive to be their areas of strength and growth from their condition provides crucial insight into which factors to enhance in this population.

The purpose of this study was to assess family‐related predictors of self‐management trajectories in youth with spina bifida (SB). Participants with SB completed the Adolescent/Young Adult Self‐Management and Independence Scale (AMIS II) interview across four time points. Family functioning, family‐related stress, and perceived family support were assessed by multiple reporters and multiple methods. Growth in AMIS II total self‐management and the AMIS II subscales (Condition and Independent Living) were estimated using linear mixed effect models as a function of family factors, after controlling for socio‐demographic, condition‐related, and neuropsychological variables that had been found to be significant predictors of self‐management in prior studies. Model fit and parsimony were assessed using Akaike's information criterion (AIC). This diverse community sample included 99 respondents aged 18–27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and 32.3% were Hispanic/Latino. Observed family cohesion at baseline was associated with all self‐management scales at age 18 (all p < 0.05). Growth in self‐management was associated with parent‐reported number of family stress events. For growth in total self‐management, the best model included age, race/ethnicity, family income, shunt status, lesion level, neuropsychological function, observed family cohesion, and an age‐by‐number of family stress events interaction effect. The study findings suggested that family factors were important predictors of self‐management trajectories, even after controlling for socio‐demographic, condition‐related, and neuropsychological covariates. Risk and protective factors identified in families of youth with SB can inform family‐focused interventions for self‐management.

Background This study examined perceived barriers to transitioning to adult healthcare among a sample of young adults with spina bifida (SB) and the degree to which these perceived barriers have impeded the transition process, and assessed relationships between these self-reported barriers and demographic and medical variables. Methods In a large national survey conducted in 2019, young adults with SB between the ages of 18 and 30 years old (N = 326) completed a questionnaire on perceived barriers to transition, which yielded scores representing the proportion of barriers experienced and the degree of interference of these barriers. Participants included both individuals who reported that they already transitioned to adult healthcare and those who did not. Results Participants endorsed a high number of barriers, with an average of 13 (SD = 7.39) of the 21 assessed barriers occurring for participants. Barriers were reported to be significantly interfering (M = 2.38, SD = 0.54, range: 1- 4). Higher proportions of barriers were experienced by individuals who returned to a pediatric provider after transitioning, males, employed or students, and with sacral lesion levels. Higher interference scores were reported by individuals who returned to a pediatric provider after transitioning, as well as by individuals who identified as White, and who had a shunt. Conclusion Implications for transition programs and support are discussed.

Aim To examine socioeconomic, condition‐related, and neuropsychological predictors of self‐management trajectories in adolescents and young adults with spina bifida. Method In this longitudinal study, participants completed the Adolescent/Young Adult Self‐Management and Independence Scale interview. Socioeconomic status (SES), shunt status, lesion level, and executive functioning were assessed. Growth in self‐management was estimated using linear mixed‐effects models. Results Participants (n = 99) were aged 18 to 27 years. Approximately half (52.5%) were female and White; 15.2% were Black; and 32.3% Hispanic or Latino. Although none of the predictors were associated with growth in self‐management from ages 18 to 27 years (p > 0.05), several factors were associated with the intercept at age 18 years for total self‐management. Higher SES at baseline predicted a higher total self‐management score at age 18 years (b = 0.03, standard error [SE] = 0.01; p < 0.001). On average, participants at age 18 years with a shunt scored lower than those without a shunt (b = −0.90, SE = 0.32; p = 0.01); those with a thoracic lesion scored lower than those with lower lesion levels (lumbar: b = −1.22, SE = 0.34; sacral: b = −1.20, SE = 0.36; p = 0.001 for both). Better parent‐reported and teacher‐reported executive functions predicted higher total self‐management (metacognitive: b = −0.03, SE = 0.01; behavioral regulation: b = −0.04, SE = 0.01; p < 0.05 for both). Interpretation On average, all participants improved in self‐management over time. Additionally, baseline superiority in self‐management for adolescents and young adults without a shunt, less severe lesions, better executive functions, and higher SES persisted over time. What this paper adds Higher socioeconomic status at baseline predicted higher self‐management scores at age 18 years. Participants with a shunt scored lower than those without a shunt. Participants with a thoracic lesion scored lower than those with other, less severe lesions. Better parent‐reported and teacher‐reported executive functions predicted higher self‐management scores at age 18 years. Growth in self‐management was not moderated by socioeconomic, condition‐related, or neuropsychological variables.

Purpose This study examined preliminary psychometrics of the Adolescent/Young Adult Self‐Management and Independence Self‐Report Scale (AMIS II SR). Methods Adolescents and adults (N = 159; 13–38 years old) with spina bifida from two clinics and one community sample completed the AMIS II SR. The majority (83%) had myelomeningocele, and about half were female (51.6%). The sample included 44.7% White, 11.3% Black and over one‐third Hispanic/Latino (38.4%) participants. Descriptive analyses and reliability were assessed; a confirmatory factor analysis (CFA) was conducted. Results Item‐to‐total correlations support the AMIS II SR total scale (r = .38–.79) and its two subscales: condition (r = .49–.67) and independent living (r = .49–.85). Internal consistency reliability was high (α = .91–.96) for the AMIS II SR total scale and subscales. A higher order CFA model that included independent living and condition self‐management as first‐order factors and a second‐order overall self‐management factor had excellent fit (RMSEA = 0.06; CFI = 0.97; TLI = 0.96). Descriptive analyses findings were reported. Conclusions This study provides psychometric evidence for the use of the AMIS II SR total (overall) scale and subscales (condition and independent living) to assess self‐management and independence.

Objective This study aims to characterize the growth in condition-related knowledge in youth with spina bifida (SB), identify neurocognitive predictors of growth, and examine associations between growth in knowledge and subsequent levels of medical self-management skills. Methods Participants were recruited from a larger longitudinal study involving 140 youth with SB and caregivers, who completed questionnaires and interviews every 2 years over 8 years. The current study included the youth report of condition-related knowledge and medical self-management skills. Youth attention and executive functioning were assessed via parent and teacher reports and performance-based assessment. Latent growth curves were conducted in Mplus Version 8 (Múthen, L. K., & Múthen, B. O. [1998]. Mplus User’s Guide. [Eighth]. Muthén & Muthén) to examine change over time in youth-reported condition-related knowledge. Neurocognitive variables were included as predictors of growth in knowledge and regression analyses were used to predict medical self-management skills from growth in condition-related knowledge. Results Youth condition-related knowledge increased linearly. Better youth performance on working memory and attention performance-based tasks predicted a higher intercept for condition-related knowledge at T1, but not slope. Teacher and parent reports of inattention and executive dysfunction were not consistent predictors of intercept and growth. Slope of condition-related knowledge was not predictive of subsequent youth self-management skills. Conclusions Youth with SB gain condition-related knowledge over time. However, executive dysfunction and inattention may impede gains in condition-related knowledge. Thus, executive functioning supports, attention-related interventions, and psychoeducation may support condition-related knowledge gains and later medical self-management skills, but further research assessing family and cultural factors is needed.