Objective: To determine feasibility of using the interactive Mobile Health and Rehabilitation (iMHere) system in spina bifida and its effects on psychosocial and medical outcomes.
Design: In a randomized controlled trial, 13 intervention participants using the iMHere system and receiving usual care and 10 control participants receiving usual care were followed for 1 year.
Results: Feasibility of use of the system was demonstrated by participants using a customized smartphone system for reminders to conduct various self-care tasks, upload photos of wounds, manage medications, complete mood surveys, and for secure messaging. High usage of the system was associated with positive changes in the subscales of the Adolescent Self-Management and Independence Scale II.
Conclusion: Use of the iMHere system in spina bifida is feasible and was associated with short-term self-reported improvements in self-management skill. This system holds promise for use in many diverse chronic care models to support and increase self-management skills.
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http://dx.doi.org/10.1097/PHM.0000000000000400 | DOI Listing |
Int J Obstet Anesth
December 2024
Department of Anesthesiology, Perioperative and Pain Medicine, Baylor College of Medicine and Texas Children's Hospital, Houston, TX, United States. Electronic address:
Prenatal repair of myelomeningocele (MMC) is associated with lower rates of hydrocephalus requiring ventriculoperitoneal shunt and improved motor function when compared with postnatal repair. Efforts aiming to develop less invasive surgical techniques to decrease the risk for the pregnant patient while achieving similar benefits for the fetus have led to the implementation of fetoscopic surgical techniques. While no ideal anesthetic technique for fetoscopic MMC repair has been demonstrated, we present our anesthetic approach for these repairs, including considerations for both the pregnant patient and the fetus.
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February 2024
Department of Pediatrics, University of Southern California Keck School of Medicine, Los Angeles, CA, USA.
Limited evidence exists that serves to guide the field of practice and research pertaining to the long-term issues and needs of adults with spina bifida. Understanding the lived experience of adults with spina bifida has lagged behind considerably resulting in limited evidence-based guidance for individuals with spina bifida and their families and the health care professionals who provide services to this population. Given the paucity of knowledge of the lived experience as it pertains to adulthood, this scoping review was undertaken.
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December 2023
Spina Bifida Hydrocephalus Scotland, The Dan Young Building, 6 Craighalbert Way, Dullatur, Glasgow G68 0LS, Scotland, United Kingdom.
Background: The transition of young people with a disability or a chronic health condition, from paediatric to adult-focused health and social care services, in Scotland, is known to be difficult. There is a significant body of evidence to suggest that a transition should start early, be holistic and inclusive, as well as structured to build essential capabilities and promote resilience. The nurse-led project, reported here, created a playful mechanism for meaningful interaction between young people, families and healthcare professionals.
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November 2024
School of Nursing, University of Wisconsin-Milwaukee, 1921 E. Hartford Avenue, Milwaukee, WI 53211, USA.
Background: Emerging adults with spina bifida have complex developmental and health care needs. Improvement in healthcare means there is greater interest in understanding and supporting the transition needs of children with spina bifida to adulthood. However, the experiences during transition for emerging adults with spina bifida in Japan remain unknown.
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August 2024
Department of Pediatrics, Northwestern, Ann & Robert H. Lurie Children's Hospital of Chicago Box 152, 225 E Chicago Avenue, Chicago, IL 60611, USA.
Purpose: Structured HCT models addressing planning, transfer, and integration into adult care for adolescents and young adults with childhood-acquired chronic conditions are becoming more prevalent. However, consensus on outcome measures to assess health care transition (HCT) interventions particularly for intellectual and developmental disabilities (IDD) population is lacking. This scoping review identified potential HCT outcome measures for young adults (aged 18-26) with IDD using the Quadruple Aim Framework.
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