Predictors of medical adherence following a bowel management program for youth and young adults with Spina Bifida.

PURPOSE: To evaluate individual and community sociodemographic factors that predict bowel regimen adherence in youth and young adults with Spina Bifida (SB) following participation in a bowel management program (BMP). METHODS: Participants were drawn from clinical cases seen through an International Center for Colorectal and Urogenital Care. Area deprivation index (ADI) scores were extracted from participant addresses and bowel regimen adherence data were collected from the electronic medical record (EMR). RESULTS: Participants' mean age was 8.06 years old, 51.7% were male, 72.4% white, 37.9% Hispanic, 56.9% government insurance, 89.7% myelomeningocele, 15.5% non-adherent. Average neighborhood disadvantage was 5.19 (SD:2.83, range:1-10). After controlling for variables correlated with adherence (p < .20), every one decile higher neighborhood disadvantage score was associated with a 48% decrease in the odds of being adherent (OR = 0.52, p = .005, 95% CI: - 101.90, - 0.21). CONCLUSION: Our results suggest that neighborhood disadvantage is a strong predictor of medical adherence following a BMP, more so than other sociodemographic and health-related variables. These results may assist with identifying which individuals may be at higher risk for poor health outcomes due to neighborhood socioeconomic disadvantage and help health care systems intervene proactively.

Cognitive disengagement syndrome in pediatric spina bifida.

The primary aim of this study was to characterize Cognitive Disengagement Syndrome (CDS) symptomatology in youth with spina bifida (SB). One hundred and sixty-nine patients aged 5-19 years old were drawn from clinical cases seen through a multidisciplinary outpatient SB clinic at a children's hospital between 2017 and 2019. Parent-reported CDS and inattention were measured using Penny's Sluggish Cognitive Tempo Scale and the Vanderbilt ADHD Rating Scale. Self-reported internalizing symptoms were measured with the 25-item Revised Children's Anxiety and Depression Scale (RCADS-25). We replicated Penny's proposed 3-factor structure of CDS with slow, sleepy, and daydreamer components. The slow component of CDS overlapped heavily with inattention, while the sleepy and daydreamer components were distinct from inattention and internalizing symptoms. Eighteen percent (22 of 122) of the full sample met criteria for elevated CDS, and 39% (9 of 22) of those patients did not meet criteria for elevated inattention. Diagnosis of myelomeningocele and presence of a shunt were associated with greater CDS symptoms. CDS can be measured reliably in youth with SB and can be discriminated from inattention and internalizing symptoms in this population. ADHD rating scale measures fail to identify a substantial portion of the SB population with attention-related challenges. Standard screening for CDS symptoms in SB clinics may be important to help identify clinically impairing symptoms and design targeted treatment plans.

Quality of Life in Youth Soccer Players After Mild Traumatic Brain Injury.

CONTEXT: Pediatric mild traumatic brain injuries (mTBIs) represent an evolving field of interest in youth athletics. Although most players recover within 4 weeks, some have symptoms that last longer. Little is known about youth health-related quality of life (HRQoL) after mTBI. OBJECTIVES: To characterize youth HRQoL after soccer-related mTBI and to identify predictors of individual differences in HRQoL recovery. DESIGN: Prospective cohort study. SETTING: Youth soccer. PARTICIPANTS: Soccer players, aged 8 to 17 years, who sustained an mTBI (n = 23) or orthopaedic injury (OI, n = 24) or remained uninjured (n = 23) during a single season. MAIN OUTCOME MEASURE(S): We assessed HRQoL via the Pediatric Quality of Life Inventory, version 4.0, and postconcussive symptoms via the Health and Behavior Index. Serial assessments occurred at 24 to 48 hours, 7 days, 30 days, and 90 days postinjury via telephone interview. RESULTS: At 7 days postinjury, the mTBI and OI groups had poorer total HRQoL (F2,67 = 11.35, P < .001) than the uninjured control group. At 7 days, the mTBI group had the poorest psychosocial HRQoL, whereas the OI group had the poorest physical HRQoL. Differences between the mTBI and uninjured control groups resolved by 30 days. Within the mTBI group, players with significant postconcussive symptoms at 7 days had poorer total (F1,21 = 23.071, P ≤ .001; F1,21 = 5.798, P = .028), psychosocial (F1,21 = 16.488, P = < .001; F1,21 = 5.050, P = .039), and physical (F1,21 = 21.671, P = < .001; F1,21 = 5.119, P = .038) HRQoL at 7 and 30 days, respectively, than players with minimal symptoms; these differences resolved by 90 days. CONCLUSIONS: As a group, youth soccer players who sustained mTBI had transient impairments in HRQoL that resolved by 30 days. A subset of players with significant postconcussive symptoms at 7 days postinjury had poorer HRQoL for at least 30 days postinjury than those whose postconcussive symptoms had resolved within a week of injury. This suggests ongoing recovery in this subset at 30 days and the potential utility of HRQoL as a measure of recovery.

Child, Parent, and Family Adjustment for Patients Followed in a Multidisciplinary Spina Bifida Clinic.

Objectives: To characterize child, parent, and family adjustment for patients followed in a multidisciplinary spina bifida (SB) clinic. Methods: Participants were drawn from clinical cases seen through a multidisciplinary outpatient SB clinic at a children's hospital between 2017 and 2019. Participants included 209 youth under 19 years old who were diagnosed with SB and their parents. Self-reported internalizing symptoms were measured in youth in grade 3 through 12 using the 25-item Revised Children's Anxiety and Depression Scale-25 (RCADS-25). Self- and parent-reported quality of life and family functioning were obtained using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and Family Impact Modules. Results: A total of 45.7% of children and adolescents reported at-risk psychosocial functioning on the PedsQL. In contrast, only 5% of patients reported clinically elevated internalizing symptoms on the RCADS. Parents' quality of life and family functioning in the study were higher than in most studies of parents of children with other chronic health conditions, children with attention deficit-hyperactivity disorder, and healthy control samples. Conclusion: Our findings indicate that children and adolescents with SB are at risk for poor health-related quality of life (HRQOL); however, poorer HRQOL may not necessarily be associated with more severe psychiatric symptoms in this population. Examining resilience factors that may help to buffer against challenges to HRQOL will be important in informing future interventions.

Concussion Symptom Treatment and Education Program: A Feasibility Study.

OBJECTIVE: To evaluate the feasibility and potential benefits of a manualized, brief cognitive-behavioral therapy-based intervention program for children and adolescents with persistent postconcussive symptoms. SETTING: Two outpatient pediatric concussion programs in the United States. PARTICIPANTS: Patients aged 8 to 17 years who sustained concussions between 2 and 12 months prior to enrollment. DESIGN: Pre-/postretrospective study. MAIN MEASURES: SCAT-3; HBI; PedsQL 4.0 Generic Core Scales; and RCADS. RESULTS: Thirty children and adolescents completed the treatment program. Self- and parent-reported postconcussive symptoms, quality of life, and internalizing symptoms significantly improved with treatment. Mixed-effects models revealed a significant decline in self-reported postconcussive symptoms across treatment sessions, a = -2.07, SE = 0.25, P < .001. The largest change occurred between sessions 2 and 3, following the session focusing on concussion psychoeducation and sleep hygiene (estimated mean change between sessions 2 and 3 = -4.72, P < .0001). CONCLUSIONS: Our findings indicate that a 6-session manualized cognitive behavioral intervention is feasible to initiate in an outpatient clinic 1 to 12 months following a pediatric mild traumatic brain injury. With a manualized format, clinicians at most levels of training should be able to implement this treatment manual and flexibly adapt as needed when working with children and adolescents who are experiencing delayed symptom recovery following concussion.

Effectiveness of an intensive outpatient program for disruptive children: initial findings.

There are currently no manualized, intensive outpatient programs (IOP), for diagnostically heterogeneous pediatric samples that simultaneously intervene with youth and parents. Such a program was developed and has been operating at Children's Hospital Colorado since January 2006. The current study was conducted to characterize the patient sample and evaluate clinical outcomes for this novel program. The study used a method of retrospective chart review to examine demographic and diagnostic information of youth and their families, who participated in IOP. Clinical outcomes were similarly assessed, using paired-samples t test comparisons of the baseline and endpoint parent-report versions of the Ohio Youth Outcome Scales. Results indicated that there were statistically significant differences in each of the Subscale scores on the Ohio Youth Scales from baseline to endpoint of IOP. Preliminary findings suggest that participation in the IOP program was associated with improved clinical outcomes, at the end of treatment.