Purpose: To describe the development and implementation of the Children’s of Alabama (COA) Spina Bifida (SB) Lifetime-Care-Model, including standardized care protocols and transition plan. Methods: In 2010, members of the pediatric team at COA began to evaluate limitations in access to care for patients with SB at various stages of life. Through clinic surveys, observations, and caregiver report, a Lifetime-Care-Model was developed and implemented. Partnerships were made with adult medicine colleagues to create an interdisciplinary model at each stage. Since developing this program, it has evolved to include standardized care protocols. Results: Since 2011, there have been 42 prenatal clinics; 114 families received counseling and prenatal care. Of these, 106 have delivered at our center and established care in our pediatric clinic. There are currently 474 patients in the pediatric and 218 in the adult clinics. Conclusions: Our institutional experience suggests that patients with SB benefit from continuity of care throughout their lifetime. This article describes early failures which led to an evolution in approach and implementation of a Lifetime-Care-Model which results in a smooth transition between all phases of life. We hope that other institutions may adapt and build upon it to create programs unique to their specific patient needs.

Objectives: To study the patterns of weight change after spinal cord injury (SCI) and identify associated risk factors. Study design: Cohort study. Setting: Sixteen Spinal Cord Injury Model Systems (SCIMS), USA. Participants: One thousand and ninety-four individuals with an SCI who were entered into the SCIMS and had a 1-year follow-up between October 2006 and November 2012. Intervention: Not applicable. Outcome measure: Change in body mass index (BMI) during the first year of injury. Height and weight were assessed during inpatient rehabilitation and 1 year after injury. Results: Mean BMI decreased from 26.3 to 25.8 kg/m² during the first year after SCI (mean change: −0.5 kg/m² (standard deviation: 3.58)). Weight loss was mainly observed among individuals classified as overweight or obese during rehabilitation (n = 576) with a BMI decrease of 1.4 kg/m², which varied significantly by sex, education, neurological level, and the presence of vertebral injury. Weight gain was noted among individuals classified as underweight or normal weight during rehabilitation (n = 518) with a BMI increase of 0.5 kg/m², with the greatest increase among individuals of Hispanic origin (1.2 kg/m²), other marital status (1.2 kg/m²), age group 31-45 years (1.1 kg/m²), with less than high school education (1.1 kg/m²), without spinal surgery (0.9 kg/m²), and with motor functionally incomplete injury (0.8 kg/m²). Conclusion: Our findings suggest that strategies for weight management should be addressed after a SCI to ameliorate the potential for unhealthful weight change, particularly among at-risk groups.

Background Access to physical activity among youth with spina bifida (SB) is much lower than it is for children without disability. Enjoyable home-based exercise programs are greatly needed. Objective Our objective is to examine the feasibility of a virtual reality (VR) active video gaming system (ie, bundle of consumer-available equipment) to meet US physical activity guidelines in two youth with SB. Methods Two youth with SB—a 12-year-old female and a 13-year-old male; both full-time wheelchair users—participated in a brief, 4-week exercise program using a popular VR head-mounted display: Oculus Quest (Facebook Technologies). The system included a Polar H10 (Polar Canada) Bluetooth heart rate monitor, a no-cost mobile phone app (VR Health Exercise Tracker [Virtual Reality Institute of Health and Exercise]), and 13 games. The intervention protocol was conducted entirely in the homes of the participants due to the coronavirus disease 2019 (COVID-19) pandemic. The VR system was shipped to participants and they were instructed to do their best to complete 60 minutes of moderate-intensity VR exercise per day. Exercise duration, intensity, and calories expended were objectively monitored and recorded during exercise using the heart rate monitor and a mobile app. Fatigue and depression were measured via self-report questionnaires at pre- and postintervention. Participants underwent a semistructured interview with research staff at postintervention. Results Across the intervention period, the total average minutes of all exercise performed each week for participants 1 and 2 were 281 (SD 93) and 262 (SD 55) minutes, respectively. The total average minutes of moderate-intensity exercise performed per week for participants 1 and 2 were 184 (SD 103) (184/281, 65.4%) and 215 (SD 90) (215/262, 82.1%) minutes, respectively. One participant had a reduction in their depression score, using the Quality of Life in Neurological Disorders (Neuro-QoL) test, from baseline to postintervention, but no other changes were observed for fatigue and depression scores. Participants reported that the amount of exercise they completed was far higher than what was objectively recorded, due to usability issues with the chest-worn heart rate monitor. Participants noted that they were motivated to exercise due to the enjoyment of the games and VR headset as well as support from a caregiver. Conclusions This study demonstrated that two youth with SB who used wheelchairs could use a VR system to independently and safely achieve exercise guidelines at home. Study findings identified a promising protocol for promoting exercise in this population and this warrants further examination in future studies with larger samples.

OBJECTIVEPredictors of permanent disability among individuals with spinal dysraphism are not well established. In this study, the authors examined potential risk factors for self-reported permanent disability among adults with spinal dysraphism.METHODSA total of 188 consecutive individuals undergoing follow-up in an adult spinal dysraphism clinic completed a standardized National Spina Bifida Patient Registry survey. Chi-square tests and logistic regression were used to assess bivariate relationships, while multivariate logistic regression was used to identify factors independently associated with self-identification as “permanently disabled.”RESULTSA total of 106 (56.4%) adults with spina bifida identified themselves as permanently disabled. On multivariate analysis, relative to completion of primary and/or secondary school, completion of technical school (OR 0.01, 95% CI 0–0.40; p = 0.021), some college (OR 0.22, 95% CI 0.08–0.53; p < 0.001), college degree (OR 0.06, 95% CI 0.003–0.66; p = 0.019), and holding an advanced degree (OR 0.12, 95% CI 0.03–0.45; p = 0.002) were negatively associated with permanent disability. Relative to open myelomeningocele, diagnosis of closed spinal dysraphism was also negatively associated with permanent disability (OR 0.20, 95% CI 0.04–0.90; p = 0.036). Additionally, relative to no stool incontinence, stool incontinence occurring at least daily (OR 6.41, 95% CI 1.56–32.90; p = 0.009) or more than weekly (OR 3.43, 95% CI 1.10–11.89; p = 0.033) were both positively associated with permanent disability. There was a suggestion of a dose-response relationship with respect to the influence of educational achievement and frequency of stool incontinence on the likelihood of permanent disability.CONCLUSIONSThe authors’ findings suggest that level of education and degree of stool incontinence are the strongest predictors of permanent disability among adults with spinal dysraphism. These findings will be the basis of efforts to improve community engagement and to improve readiness for transition to adult care in a multidisciplinary pediatric spina bifida clinic.

Background The impact of COVID-19 on adolescents with cerebral palsy (CP) and their families is under investigated, particularly in the Southeastern United States. Objective/Hypothesis Examine the impact of COVID-19 on lifestyle activities, general and mental health, and basic needs among a cohort of adolescents with CP in the Southeast U.S. A second purpose was to identify key factors that impacted their lifestyles. Methods Cross-sectional survey of adolescents with CP (ages 10-19 years) who completed a child-modified version of the Coronavirus Disability Survey (COV-DIS). Health and behavior items were associated with the perceived lifestyle impact of COVID-19. Results A total of 101 respondents completed the survey (mean age 14 ± 2 years). Respondents reported minimal-to-no change in general health since the COVID-19 outbreak. Basic needs were met for most families. Nearly all participants (94.1%) reported a mental health concern that resulted from COVID-19: 32.7% felt down or depressed; 47.5% felt little pleasure in doing things; and 64.4% felt isolated. Moreover, 74.3% reported decreased socialization; 51.5% reported reduced exercise participation; 43.6% reported difficulties in obtaining medical care. Most participants (90.1%) were negatively affected by COVID-19 and key associated factors were: reduced interactions with friends and family ( p =0.001), exercise participation ( p =0.016), interest in doing things ( p =0.005), worsened depression ( p =0.015), increased isolation from others and ( p =0.02) at home ( p =0.006), technological communication ( p =0.00), and virus exposure ( p =0.008). Conclusions Study findings highlight problem areas that warrant urgent intervention among adolescents with CP located within the Southeast U.S.