Parent/caregiver's role in nutrition, physical activity, and food access among children diagnosed with spina bifida
CONCLUSION: These findings suggest there is a need for parental/caregiver nutrition education to assist children with SB with meal and activity planning to achieve optimal health.PMID:38160371 | PMC:PMC10789329 | DOI:10.3233/PRM-230016 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: JoAnne L Whelan Cheryl L H Armstrong Rebecca Schroyer Joseph O'Neil Source Type: research

Addressing social determinants of health through customization: Quality improvement, telemedicine, and care coordination to serve immigrant families
CONCLUSION: Given the occurrence of adverse SDOH among individuals with SB, many of whom are new Latin-American immigrants, meaningful clinical efforts are needed to both identify and address the causes of the observed disparities. EMR customization is feasible and can identify and, through social prescriptions, address SDOH to support the provision of safe, high quality, and equitable care for vulnerable and medically complex populations at home and potentially abroad.PMID:38160372 | PMC:PMC10789335 | DOI:10.3233/PRM-230036 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Heidi Castillo Mary M Locastro Ellen Fremion Anjali Malhotra Rosanna Morales Kelly Timmons Susan Jarosz Nienke P Dosa Jonathan Castillo Source Type: research

2023 updates to the spina bifida transition to adult care guidelines
CONCLUSION: Structured transition initiatives increase the likelihood of establishing with adult care, decrease acute care use for young adults with spina bifida, and have the potential to improve quality of life and optimize chronic condition management. However, there is still a need to implement structure transition practices more broadly for this population using these recommended guidelines.PMID:38160373 | PMC:PMC10789338 | DOI:10.3233/PRM-230052 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Ellen Fremion Melissa Kaufman Shubhra Mukherjee Pamela Murphy Katherine Smith Source Type: research

Release and highlights of the Lifespan Bowel Management Protocol produced for clinicians who manage neurogenic bowel dysfunction in individuals with spina bifida
J Pediatr Rehabil Med. 2023;16(4):675-677. doi: 10.3233/PRM-230060.NO ABSTRACTPMID:38160374 | PMC:PMC10789357 | DOI:10.3233/PRM-230060 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Maryellen S Kelly Eileen Sherburne Joy Kerr Colleen Payne Heather Dorries Patricia Beierwaltes Adam Guerro Judy Thibadeau Source Type: research

From prenatal care to spina bifida related mortality: The lifespan is marked by transitions experienced by increasing immigrant and international populations
J Pediatr Rehabil Med. 2023;16(4):581-582. doi: 10.3233/PRM-239020.ABSTRACTWhether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube defects related issues is needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida Association (SBA) was a catalyst for transnational dialog in the field of spina bifida (SB) research. Concurrently, the Journal of Pediatric Rehabilitation Medicine (JPRM) provides a platform for both international research as well as numerous clinical and educational p...
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Jonathan Castillo Judy K Thibadeau Tim Brei Heidi Castillo Source Type: research

Motor function outcomes in children with open prenatal repair of Spina Bifida Aperta at 36-month follow-up: The Zurich cohort
CONCLUSION: At 36 months, most children with open prenatal repair for SB showed favourable ambulation status. However, most still used assistive devices or orthotics. Anatomic lesion level on neonatal MRI, motor function level during the neonatal period, and motor function level at 36 months were associated with ambulation status at 36 months.PMID:38160370 | DOI:10.3233/PRM-220096 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Brittany Brun David A Wille Sonja M Schauer Ueli Moehrlen Martin Meuli Beatrice Latal Beth Padden Spina Bifida Study Group Zurich Source Type: research

Parent/caregiver's role in nutrition, physical activity, and food access among children diagnosed with spina bifida
CONCLUSION: These findings suggest there is a need for parental/caregiver nutrition education to assist children with SB with meal and activity planning to achieve optimal health.PMID:38160371 | DOI:10.3233/PRM-230016 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: JoAnne L Whelan Cheryl L H Armstrong Rebecca Schroyer Joseph O'Neil Source Type: research

Addressing social determinants of health through customization: Quality improvement, telemedicine, and care coordination to serve immigrant families
CONCLUSION: Given the occurrence of adverse SDOH among individuals with SB, many of whom are new Latin-American immigrants, meaningful clinical efforts are needed to both identify and address the causes of the observed disparities. EMR customization is feasible and can identify and, through social prescriptions, address SDOH to support the provision of safe, high quality, and equitable care for vulnerable and medically complex populations at home and potentially abroad.PMID:38160372 | DOI:10.3233/PRM-230036 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Heidi Castillo Mary M Locastro Ellen Fremion Anjali Malhotra Rosanna Morales Kelly Timmons Susan Jarosz Nienke P Dosa Jonathan Castillo Source Type: research

2023 updates to the spina bifida transition to adult care guidelines
CONCLUSION: Structured transition initiatives increase the likelihood of establishing with adult care, decrease acute care use for young adults with spina bifida, and have the potential to improve quality of life and optimize chronic condition management. However, there is still a need to implement structure transition practices more broadly for this population using these recommended guidelines.PMID:38160373 | DOI:10.3233/PRM-230052 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Ellen Fremion Melissa Kaufman Shubhra Mukherjee Pamela Murphy Katherine Smith Source Type: research

Release and highlights of the Lifespan Bowel Management Protocol produced for clinicians who manage neurogenic bowel dysfunction in individuals with spina bifida
J Pediatr Rehabil Med. 2023;16(4):675-677. doi: 10.3233/PRM-230060.NO ABSTRACTPMID:38160374 | DOI:10.3233/PRM-230060 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Maryellen S Kelly Eileen Sherburne Joy Kerr Colleen Payne Heather Dorries Patricia Beierwaltes Adam Guerro Judy Thibadeau Source Type: research

From prenatal care to spina bifida related mortality: The lifespan is marked by transitions experienced by increasing immigrant and international populations
J Pediatr Rehabil Med. 2023;16(4):581-582. doi: 10.3233/PRM-239020.ABSTRACTWhether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube defects related issues is needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida Association (SBA) was a catalyst for transnational dialog in the field of spina bifida (SB) research. Concurrently, the Journal of Pediatric Rehabilitation Medicine (JPRM) provides a platform for both international research as well as numerous clinical and educational p...
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Jonathan Castillo Judy K Thibadeau Tim Brei Heidi Castillo Source Type: research

Motor function outcomes in children with open prenatal repair of Spina Bifida Aperta at 36-month follow-up: The Zurich cohort
CONCLUSION: At 36 months, most children with open prenatal repair for SB showed favourable ambulation status. However, most still used assistive devices or orthotics. Anatomic lesion level on neonatal MRI, motor function level during the neonatal period, and motor function level at 36 months were associated with ambulation status at 36 months.PMID:38160370 | DOI:10.3233/PRM-220096 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Brittany Brun David A Wille Sonja M Schauer Ueli Moehrlen Martin Meuli Beatrice Latal Beth Padden Spina Bifida Study Group Zurich Source Type: research

Parent/caregiver's role in nutrition, physical activity, and food access among children diagnosed with spina bifida
CONCLUSION: These findings suggest there is a need for parental/caregiver nutrition education to assist children with SB with meal and activity planning to achieve optimal health.PMID:38160371 | DOI:10.3233/PRM-230016 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: JoAnne L Whelan Cheryl L H Armstrong Rebecca Schroyer Joseph O'Neil Source Type: research

Addressing social determinants of health through customization: Quality improvement, telemedicine, and care coordination to serve immigrant families
CONCLUSION: Given the occurrence of adverse SDOH among individuals with SB, many of whom are new Latin-American immigrants, meaningful clinical efforts are needed to both identify and address the causes of the observed disparities. EMR customization is feasible and can identify and, through social prescriptions, address SDOH to support the provision of safe, high quality, and equitable care for vulnerable and medically complex populations at home and potentially abroad.PMID:38160372 | DOI:10.3233/PRM-230036 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Heidi Castillo Mary M Locastro Ellen Fremion Anjali Malhotra Rosanna Morales Kelly Timmons Susan Jarosz Nienke P Dosa Jonathan Castillo Source Type: research

2023 updates to the spina bifida transition to adult care guidelines
CONCLUSION: Structured transition initiatives increase the likelihood of establishing with adult care, decrease acute care use for young adults with spina bifida, and have the potential to improve quality of life and optimize chronic condition management. However, there is still a need to implement structure transition practices more broadly for this population using these recommended guidelines.PMID:38160373 | DOI:10.3233/PRM-230052 (Source: Journal of Pediatric Rehabilitation Medicine)
Source: Journal of Pediatric Rehabilitation Medicine - December 31, 2023 Category: Rehabilitation Authors: Ellen Fremion Melissa Kaufman Shubhra Mukherjee Pamela Murphy Katherine Smith Source Type: research