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PURPOSE: This study aimed to evaluate the feasibility and acceptability of a nurse-led eHealth transition care program for adolescents with spina bifida. DESIGN AND METHODS: This study used a single-arm, pretest-posttest intervention study. Adolescents with spina bifida, aged 12-15â¯years, and their parents participated in the program. A 6-week program was delivered through an online platform in real-time by nurses. We evaluated feasibility and acceptability using criteria such as the completion rate, program satisfaction, changes in transition readiness, social support, career preparation behavior, sexual knowledge, and sexual worries at three time points from July to September 2021. RESULTS: Thirteen adolescents completed all sessions and surveys (13/14, 92.9%). All adolescents expressed high satisfaction with both the content and delivery methods of the program. Significant benefits in transition readiness, career preparation behavior, and sexual knowledge were identified over the study period. However, the evaluation of social support and sexual worries did not demonstrate any significant improvements. Additionally, through family counseling, adolescents benefited from experiences such as reflecting on their current transition readiness, setting and achieving individualized goals and plans using a self-checklist with their parents and nursing professionals. CONCLUSION: This nurse-led eHealth intervention was feasible and acceptable for adolescents with spina bifida. Furthermore, our results highlight the practicability and the potential for strategic dissemination of using this eHealth program in transitional care during the COVID-19 pandemic. PRACTICE IMPLICATIONS: The eHealth transition care program contributes to broadening existing nursing interventions not only in medical areas but also in daily life areas.
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COVID-19 , Spinal Dysraphism , Telemedicine , Transitional Care , Adolescent , Humans , Nurse's Role , Feasibility Studies , Pandemics , Spinal Dysraphism/psychologyABSTRACT
Introduction: Sleep disordered breathing is very common in Arnold Chiari malformation but Biots's breathing has not been reported in these cases. Report of Cases: 3-year-old with history of Arnold Chiari II malformation with hydrocephalus (s/p VP shunt and surgical decompression), spina bifida myelomeningocele (s/p in utero repair), subglottic stenosis with prior tracheostomy and eventual decannulation presented for evaluation of sleep disordered breathing. Presenting symptoms included witnessed apneas, cyanosis, daytime sleepiness and frequent awakenings. Physical examination was largely unremarkable. Initial PSG demonstrated complex sleep apnea, with an AHI 20.6, REM AHI 57.8 per hour of sleep, ETCO2 peak of 69 cm H20 and an O2 saturation nadir of 34%, with sleep related hypoventilation/hypoxemia and Biot's breathing in the absence of opioid use and CNS infection. During titration study, Biot's breathing, complex apnea and sleep related hypoventilation/ hypoxemia responded well to BiPAP ST of IPAP 18 cm H20 and EPAP 14 cm H20 BUR of 12 and oxygen of 1 L/min. She later developed intolerance to BiPAP due to high pressures and was decreased to BIPAP 13/11 cm H2O. Later the patient discontinued the use of BIPAP due to intolerance and was switched to night time O2 at 3-4 L/min. Per the parents, the patient has been maintaining her oxygen saturation in the absence of BIPAP therapy with oxygen use. Due to COVID, patient was unable to follow up but will be scheduled for a repeat PSG in the near future. She followed with Neurosurgery for Arnold Chiari II and they recommended no surgical intervention at this time due to functional VP shunt. Conclusion: This is an atypical presentation of Biot's breathing in the absence of CNS infections and opioid use in a patient with Arnold Chiari malformation II. Patient has complex sleep apnea, initially well controlled with BiPAP ST, but developed BiPAP intolerance. She is on oxygen with good control of hypoxemia in the absence of BiPAP therapy.
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Introduction: Obstructive sleep apnea (OSA) is the most common sleep-related breathing disorder. It is a multi-factorial disease with a variety of identified causes including age, male gender, obesity, craniofacial and upper airway abnormalities. We would like to describe a patient who had severe OSA following application of Halo traction, which significantly improved following the removal of the device. Report of Cases: 14-year-old male with medical history of spina bifida, chiari malformation s/p decompression, shunted hydrocephalus and severe scoliosis, was admitted to the hospital for anterior spinal discectomy L2-S1 and Halo application with traction for scoliosis. He previously had nocturnal polysomnogram (NPSG) in 2017 that demonstrated very mild mixed apnea with an apnea hypopnea index (AHI) of 5.5. Because central apneas were very brief and clustered in REM, family elected to repeat a study rather than treat. In 2019, he had a follow up study with complaints of snoring and thirst, and this demonstrated an AHI of 21 with 29 brief central apneas and 72 hypopneas, 1 obstructive apnea. He had a T&A and turbinate ablation and due to the global pandemic did not undergo repeat sleep study. During admission for his anterior spinal discectomy and Halo, he demonstrated persistent night time hypoxia. A split night sleep study showed evidence of severe OSA with pretreatment AHI of 94.4, oxygen nadir 86%. Continuous positive airway pressure (CPAP) was initiated at 5 cm of water and titrated to 11 cm of water. On CPAP of +11 severe obstructive events continued with an AHI of 40.6, oxygen nadir 92%. A bilevel positive airway pressure (BIPAP) titration study the subsequent night started at pressures of 12/6 and titrated to 21/9 with respiratory rate of 12 yet demonstrated AHI of 51, oxygen nadir 89%. Study transitioned to average volume assisted pressure support (AVAPS) with IPAP max of 26, IPAP minimum of 12 EPAP of 9, tidal volume of 175ml, rate of 12 with inadequate control of his obstructive events with an AHI of 24.8, minimum oxygen saturations of 91. While hospitalized, he remained on AVAPS with normal capillary blood gases. Halo traction was removed 2 weeks following his surgery with plan was to send him home on AVAPS and repeat NPSG in 6 weeks. However, as a result of COVID pandemic/Philips recall, CPAP was the only device available for home use, so CPAP therapy at +8 cm was trialed overnight, demonstrating oxygen nadir of 92% and a normal capillary blood gas in the morning. Patient was then discharged home on CPAP of +8 cm of water. He returned back to sleep center for a BIPAP titration study to re-establish BIPAP/AVAPS settings, as his inpatient sleep study had shown severe OSA. During the sleep study, he was started on BIPAP 12/6 and he remained on it throughout the night with 0 central and 0 obstructive events. As he did well, he was advised to continue CPAP +8 with plans to repeat the sleep study off CPAP. In clinic follow up, he reported mild skin breakdown and occasionally waking unrefreshed. Conclusion: As our patient did significantly better following the removal of Halo traction device, it is likely that Halo traction device caused fixed over flexion of the cervical spine that resulted in decrease in his airway diameter, which further worsened during his sleep, and caused severe OSA.
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INTRODUCTION AND OBJECTIVE: Spina Bifida (SB) is a congenital spinal defect with multiple urologic manifestations requiring life-long urologic care. Transition to adult health care can be particularly difficult for patients with complex medical issues, especially during COVID-19. Our team created an online educational series for patients with SB to help provide education and community building. Herein, we describe our experience with a virtual SB Education Series and the results of survey-based patient experience through a virtual platform. METHODS: Patients with SB ages 16-24 and their caregivers were identified at a single tertiary academic medical center and were invited to the zoom education day series. Pre and post session surveys were collected, and data analyzed. RESULTS: There were a total of 68 registrations for 4 conferences held between 5/3/20-12/9/20. 24, 24, 21, 36 invitations were sent out before each session and 18,18, 11, 21 patients attended each education session, respectively. A total of 46% (31/68) participants completed the pre-survey and 19% (13/68) completed the post-survey. The survey results can be found in Table 1. Participants were comfortable using telehealth for medical visits (4.87), found them easy (4.69) and would use telehealth for future appointments (4.7). This did not increase significantly after the educational sessions. However, there was a significant increase in patients' comfort of navigating non-emergent medical problems during the COVID-19 pandemic between pre and post-survey results (4.07 vs 5.17, p <0.01). Importantly, participants did not feel that they lost the ability to connect with other individuals during the pandemic (4.45) and were strongly in favor of attending future conferences. CONCLUSIONS: This program aimed to reach patients with SB who were transitioning from pediatric to adult urology. Attendance increased with higher volume of direct outreach of patients in the adult and pediatric SB clinics. Importantly, by engaging in online educational series, participants became more comfortable managing non-emergent urologic issues. Transitional urology patients with SB can benefit from online educational sessions and this platform was well received. Future directions will be to increase participants and determine the effectiveness of video educational session on participants' access to care.
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The COVID-19 pandemic has dramatically impacted delivery of outpatient care. Many people with spina bifida (SB) in the U.S. receive outpatient healthcare in a multidisciplinary setting. In accordance with state healthcare mandates, outpatient multidisciplinary clinic visits were deferred, postponed, or canceled, while telemedicine systems were implemented. A survey was created and distributed to all known SB clinics in the U.S. We explored the impact of the COVID-19 pandemic on the delivery of outpatient care for the SB population and the use of telemedicine in response. Novel uses of telehealth, benefits of use, suggestions for overcoming barriers, and future opportunities are identified and discussed.
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Background: Though much research has been done on the cognitive profiles of children, the abilities of patients with SBM as they age into adulthood are not well understood.Objective: Determine if adults with SBM have impairments in overall cognition, attention, executive function, and memory compared to typically developing adults or a standardized population mean.Methods: A medical librarian composed a search of spina bifida, adults, and cognitive function. 549 results were screened using title and abstract. Data were extracted using Covidence review software, including risk of bias assessments. 24 studies were included.Results: Memory impairments, notably working and prospective, have been reported. Results in other domains varied. Average VIQ or PIQ did not imply lack of impairment in other specific domains.Conclusion: Memory impairments should be accounted for and neuropsychological testing should be considered when providing care to adults with SBM. Future longitudinal cognitive aging and interventional studies are needed.