Parents' school-related concerns and perceived strengths in youth with spina bifida.

BACKGROUND: Although the academic difficulties of children with spina bifida (SB) are well-documented, there is limited literature on parents' views of their children's school experiences and school-related supportive services. Thus, the current study examined parents' school-related concerns, as well as perceived areas of strength, among children with SB. METHODS: Using a mixed-methods approach, 30 families (29 mothers and 19 fathers) of children with SB (ages 8-15 years) completed questionnaires and interviews. Content analysis was used to generate themes from interview data about parents' school-related concerns and perceptions of their child's strengths. RESULTS: Overall, six themes emerged when assessing both parents' concerns and perceived strengths. Some parents did not endorse school concerns or strengths for their child. However, other parents described concerns related to academic performance, cognitive abilities, lack of school support, missed school and/or class time and disengagement, as well as strengths such as academic skills, cognitive abilities, persistence, self-advocacy and agreeableness. Despite parents' concerns about their children's academic performance, quantitative data revealed that less than 50% of children had received a neuropsychological evaluation and/or academic accommodations; additional quantitative data supported the qualitative findings. CONCLUSIONS: The mixed-methods approach used in this study provides a richer understanding of parents' experiences in the school setting when they have a child with SB. Results can inform clinical practice, identifying a need to improve academic support for children with SB and help parents manage education-related stressors.

Social Skills and Medical Responsibility Across Development in Youth With Spina Bifida.

OBJECTIVE: To examine the predictive role of social skills in youth with spina bifida (SB) on growth in medical responsibility across development. METHODS: As part of a larger, longitudinal study, 140 youth with SB were assessed across four time points (ages 8-22 across time points). Mixed-effects models were investigated for change with: (a) no predictors (i.e., change in medical responsibility across age; time was examined using the participant's age, centered at 11.5 years); (b) social variables (i.e., observed social behaviors, parent- and teacher-reported social skills) as predictors; and (c) social variables as predictors with intelligence quotient, lesion level, and sex as covariates. RESULTS: Significant growth with age was identified for medical responsibility (p < .0001). Observed, parent-reported, and teacher-reported social skills did not significantly predict this growth; however, all three predicted the intercept for medical responsibility at 11.5 years of age (ps ≤ .047). Parent-reported social skills remained a significant predictor of the intercept at 11.5 years of age when including the covariates (p = .008). CONCLUSIONS: Children with SB who exhibited more positive social skills were more likely to a have higher level of medical responsibility in late childhood, but higher levels of social skills were not associated with a more rapid increase in responsibility over time. Identifying existing social strengths and promoting the practice of prosocial skills may have additional benefits to children with SB, including their acquisition of medical responsibility.

Longitudinal Associations Between Pain and Psychosocial Adjustment in Youth With Spina Bifida.

OBJECTIVE: This study examined: (a) the nature and prevalence of pain in youth with spina bifida (SB) (b) common coping responses to pain, and (c) longitudinal, bi-directional associations between internalizing symptoms and pain characteristics. METHODS: Data were collected from youth (N = 140, 53.6% female, ages 8-15 at Time 1) and their parents and teachers at two time points spaced 2 years apart. Youth reported on several pain characteristics and coping responses. Multiple informants reported on child internalizing symptoms. Evaluation of Aims 1-3 was based on descriptive analyses, bivariate correlations, and linear and logistic regressions. RESULTS: About 25% of the sample reported chronic pain (e.g., experiencing pain one or more times per week over the past 3 months) at Time 1 or 2, with roughly one-third of this chronic pain subsample reporting chronic pain both time points. Pain was usually rated as mild in intensity for the full sample and most commonly experienced in the head, abdomen, and back, and described as "aching." Youth with chronic pain reported significantly higher pain intensity and tended to use condition-specific methods to cope with pain (e.g., taking off braces). In 2 of 10 analyses, internalizing symptoms at Time 1 were associated with chronic pain and pain intensity at Time 2. CONCLUSIONS: Roughly one-fourth of youth with SB are at risk for experiencing chronic pain, highlighting the need for increased assessment and treatment of pain in this population. Youth psychological functioning appears to more often precede, rather than being a consequence of pain symptoms.

Pathways by which Maternal Factors are Associated With Youth Spina Bifida-Related Responsibility.

OBJECTIVE: Achieving condition-related autonomy is an important developmental milestone for youth with spina bifida (SB). However, the transfer of condition-related responsibility to these youth can be delayed due to parent factors. This study aimed to investigate two potential pathways by which maternal factors may be associated with condition-related responsibility among youth with SB: (a) Maternal adjustment → perception of child vulnerability (PPCV) → youth condition-related responsibility; and (b) Maternal PPCV → overprotection → youth condition-related responsibility. METHODS: Participating youth with SB (N = 140; Mage=11.4 years, range = 8-15 years) were recruited as part of a longitudinal study; data from three time points (each spaced 2 years apart) from the larger study were used. Mothers reported on personal adjustment factors, PPCV, and overprotection. An observational measure of overprotection was also included. Mothers, fathers, and youth with SB reported on youths' degree of responsibility for condition-related tasks. Analyses included age, lesion level, IQ, and the dependent variables at the prior wave as covariates. RESULTS: Bootstrapped mediation analyses revealed that PPCV significantly mediated the relationship between maternal distress and youth responsibility for medical tasks such that higher levels of distress at Time 1 predicted higher levels of PPCV at Time 2 and lower youth medical responsibility at Time 3. Furthermore, self-reported maternal overprotection significantly mediated the relationship between maternal PPCV and youth responsibility for medical tasks. CONCLUSIONS: Maternal personal distress, PPCV, and self-reported overprotection are interrelated and affect youth's condition-related responsibility. Interventions for mothers of youth with SB that target these factors may improve both maternal and youth outcomes.

Exploring an Existing Weight Management App for Use With Adolescents and Young Adults With Spina Bifida: Usability Study.

BACKGROUND: Adolescents and young adults with spina bifida (AYA-SBs) have unique user needs, given their variable and complex symptom profile. Owing to multiple barriers to prevention and intervention treatments for secondary conditions (eg, obesity), AYA-SBs may benefit from the use of behavioral intervention technologies (BITs). However, as BITs are often designed and tested with typically developing individuals, it is unclear if existing BITs may be usable for AYA-SBs. OBJECTIVE: This study aimed to evaluate the usability of a high-quality, publicly available, weight management-focused mobile BIT (smartphone app) for AYA-SBs. METHODS: Overall, 28 AYA-SBs attending a Young Men's Christian Association-based summer camp completed 4 structured usability tasks using a weight management app designed for the general public called My Diet Coach (Bending Spoons). Learnability was measured by (1) time to complete task, (2) number of user errors, and (3) correct entry of data when requested by the app. Satisfaction and general usability were measured via self-reported questionnaires and qualitative feedback following interactions with the app. RESULTS: The majority of the sample were able to complete the tasks, with increased completion rates and improved times on second attempts of the tasks (Ps<.05). Errors were common, and discrepancies emerged between quantitative and qualitative feedback such that self-reported measures indicated dissatisfaction but qualitative feedback was generally positive. Suggested improvements to the app included (1) tutorials, (2) simplifying the design, (3) more activity options for those who ambulate by wheelchair, and (4) notifications to prompt use. CONCLUSIONS: AYA-SBs were able to learn how to complete specific tasks independently on a weight management app, but design changes consistent with previously proposed user needs were recommended. Rather than designing entirely new BITs, it may be possible to adapt existing technologies to personalize BITs for specific populations such as AYA-SBs.

Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents.

PURPOSE: This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions. METHODS: Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes. RESULTS: Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools. CONCLUSIONS: These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models. IMPLICATIONS FOR CANCER SURVIVORS: Elucidating AYA and parent recommendations for survivorship care delivery can help to promote continuous engagement in care, target unmet needs, and promote health through survivorship models that are deemed acceptable to both patients and families.

The Migration of Caudally Threaded Thoracic Epidural Catheters in Neonates and Infants.

BACKGROUND: The migration of pediatric thoracic epidural catheters via a thoracic insertion site has been described. We assessed the migration of caudally threaded thoracic epidural catheters in neonates and infants at our institution. METHODS: The anesthesia records and diagnostic imaging studies of neonates and infants who had caudal epidural catheters placed during a 26-month period at our hospital were analyzed. Imaging studies were reviewed for changes in epidural catheter tip position. RESULTS: Eighty-five patients 1-325 days of age (median, 51 days; interquartile range, 39-78 days) and weights of 2.5-9.5 kg (median, 5 kg; interquartile range, 4.3-5.8 kg) met the study criteria. Fifty-four (64%) of the patients (95% CI, 52%-73%) experienced catheter migration of 1 or more vertebral levels (range, 3 levels caudad [outward] to 3 levels cephalad [inward]), and 23 (27%) of the patients (95% CI, 18%-38%) experienced catheter migration to the T4 level or higher. Migration of 2 or more vertebral levels occurred only in children who weighed <6 kg and were under 73 days of age. CONCLUSIONS: Epidural catheter migration occurs commonly in neonates and infants. Postoperative imaging is crucial to confirm catheter tip location after epidural catheter placement, as failure to assess catheter migration might result in suboptimal analgesia or other undesirable outcomes.

An Interactive Virtual Reality Tour for Adolescents Receiving Proton Radiation Therapy: Proof-of-Concept Study.

BACKGROUND: Child life therapists provide patient education for children undergoing radiation therapy to assist in coping with and understanding their treatment. OBJECTIVE: This proof-of-concept study aimed to determine the feasibility of incorporating a 360-degree video tour via a virtual reality system for children scheduled to receive radiation therapy. The secondary objective was to qualitatively describe each subject's virtual reality experience. METHODS: Children aged ≥13 years scheduled to receive proton radiation therapy were included in the study. Subjects watched the 360-degree video of the radiation therapy facility in an immersive virtual reality environment with a child life therapist experienced in coaching children receiving radiation therapy and completed a survey after the tour. RESULTS: Eight subjects consented to participate in the study, and six subjects completed the 360-degree video tour and survey. All the enrolled patients completed the tour successfully. Two subjects did not complete the survey. Two subjects requested to pause the tour to ask questions about the facility. Five subjects said the tour was helpful preparation before undergoing proton radiation therapy. Subjects stated that the tour was helpful because "it showed [them] what's to come" and was helpful to see "what it's like to lay in the machine." One subject said, "it made me feel less nervous." Six subjects stated that they would like to see this type of tour available for other areas of the hospital, such as diagnostic imaging rooms. None of the subjects experienced nausea or vomiting. CONCLUSIONS: The 360-degree video tour allowed patients to explore the treatment facility in a comfortable environment. Participants felt that the tour was beneficial and would appreciate seeing other parts of the hospital in this manner.

A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida.

OBJECTIVE: Behavioral intervention technologies (BITs) stand as a promising delivery mechanism that overcomes multiple condition-specific and access barriers for self-management interventions for adolescents and young adults with spina bifida (AYA-SB). The purpose of the current review was to synthesize the behavioral and self-management intervention literature in conditions that have overlapping symptoms with youth with SB and to develop a model of likely user needs for AYA-SB that promotes self-management. METHOD: The search strategy was conducted by a medical research librarian in the following databases: MEDLINE (Ovid), EMBASE (Elsevier), PsycINFO (EbscoHost), the Cochrane Library (Wiley), and Web of Science (Thomson Reuters) databases. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (registration number CRD42018092342). RESULTS: In total, 18 articles were included in the current BIT review. The majority of included studies (1) targeted the management of chronic health conditions, (2) were informed by evidence-based approaches, (3) relied on content delivery, (4) were Web-based, (5) used linear or user-driven workflows, (6) included professional human support, and (7) included a control condition. CONCLUSIONS: Many of the evaluated BITs resulted in acceptable usage and maintained or improved targeted symptoms. A user needs model for AYA-SB is proposed with the intention that future research will promote further refinement and ultimate deployment of a BIT for AYA-SB to promote self-management.

The timing and prevalence of intraoperative hypotension in infants undergoing laparoscopic pyloromyotomy at a tertiary pediatric hospital.

BACKGROUND: Intraoperative hypotension may be associated with adverse outcomes in children undergoing surgery. Infants and neonates under 6 months of age have less autoregulatory cerebral reserve than older infants, yet little information exists regarding when and how often intraoperative hypotension occurs in infants. AIMS: To better understand the epidemiology of intraoperative hypotension in infants, we aimed to determine the prevalence of intraoperative hypotension in a generally uniform population of infants undergoing laparoscopic pyloromyotomy. METHODS: Vital sign data from electronic records of infants who underwent laparoscopic pyloromyotomy with general anesthesia at a children's hospital between January 1, 1998 and October 4, 2013 were analyzed. Baseline blood pressure (BP) values and intraoperative BPs were identified during eight perioperative stages based on anesthesia event timestamps. We determined the occurrence of relative (systolic BP <20% below baseline) and absolute (mean arterial BP <35 mmHg) intraoperative hypotension within each stage. RESULTS: A total of 735 full-term infants and 82 preterm infants met the study criteria. Relative intraoperative hypotension occurred in 77%, 72%, and 58% of infants in the 1-30, 31-60, and 61-90 days age groups, respectively. Absolute intraoperative hypotension was seen in 21%, 12%, and 4% of infants in the 1-30, 31-60, and 61-90 days age groups, respectively. Intraoperative hypotension occurred primarily during surgical prep and throughout the surgical procedure. Preterm infants had higher rates of absolute intraoperative hypotension than full-term infants. CONCLUSIONS: Relative intraoperative hypotension was routine and absolute intraoperative hypotension was common in neonates and infants under 91 days of age. Preterm infants and infants under 61 days of age experienced the highest rates of absolute and relative intraoperative hypotension, particularly during surgical prep and throughout surgery.

A Technical Evaluation of Wireless Connectivity from Patient Monitors to an Anesthesia Information Management System During Intensive Care Unit Surgery.

Surgical procedures performed at the bedside in the neonatal intensive care unit (NICU) at The Children's Hospital of Philadelphia were documented using paper anesthesia records in contrast to the operating rooms, where an anesthesia information management system (AIMS) was used for all cases. This was largely because of logistical problems related to connecting cables between the bedside monitors and our portable AIMS workstations. We implemented an AIMS for documentation in the NICU using wireless adapters to transmit data from bedside monitoring equipment to a portable AIMS workstation. Testing of the wireless AIMS during simulation in the presence of an electrosurgical generator showed no evidence of interference with data transmission. Thirty NICU surgical procedures were documented via the wireless AIMS. Two wireless cases exhibited brief periods of data loss; one case had an extended data gap because of adapter power failure. In comparison, in a control group of 30 surgical cases in which wired connections were used, there were no data gaps. The wireless AIMS provided a simple, unobtrusive, portable alternative to paper records for documenting anesthesia records during NICU bedside procedures.