Optimizing health care for children with spina bifida

Liptak, Gregory S.; Samra, Ahmad

doi:10.1002/ddrr.91

Cited by 60 publications

(65 citation statements)

References 109 publications

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“…5 While utilizing a medical home, our respondents reported access to primary and specialized care that was both consistent and timely, without any delay. In contrast, a study of 122 individuals with SB between the ages of 16 and 59 found that 71% of them reported difficulty accessing health care, which was associated with worse overall health.…”

Section: J Neurosurg Pediatr Volume 17 • February 2016 206mentioning

confidence: 86%

“…In contrast, a study of 122 individuals with SB between the ages of 16 and 59 found that 71% of them reported difficulty accessing health care, which was associated with worse overall health. 5 Prompt access to medical care is a relevant concern, particularly in SB, where the number of adult primary care and specialty physicians with extensive knowledge of this disease has been shown to be insufficient. 8 Such inexperience has been identified as a clear barrier to a successful transition for patients with SB.…”

Section: J Neurosurg Pediatr Volume 17 • February 2016 206mentioning

confidence: 99%

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Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida

Aguilera

Wood

Keeley³

et al. 2016

PED

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OBJECT The transition of the young adult with spina bifida (YASB) from pediatric to adult health care is considered a priority by organized pediatrics. There is a paucity of transition programs and related studies. Jacksonville Health and Transition Services (JaxHATS) is one such transition program in Jacksonville, Florida. This study’s purpose was to evaluate the health care access, utilization, and quality of life (QOL) of a group of YASBs who have transitioned from pediatric care. METHODS A survey tool addressing access to health care and quality of health and life was developed based on an established survey. Records of the Spinal Defects Clinic held at Wolfson Children’s Hospital and JaxHATS Clinic were reviewed and YASBs (> 18 and < 30 years old) were identified. RESULTS Ten of the 12 invited YASBs in the Jacksonville area completed the surveys. The mean age of respondents was 25.1 years. All reported regular medical home visits, 8 with JaxHATS and 2 with other family care groups. All reported easy access to medical care and routine visits to spina bifida (SB) specialists; none reported difficulty or delays in obtaining health care. Only 2 patients required emergent care in the last year for an SB-related medical problem. Seven respondents reported very good to excellent QOL. Family, lifestyle, and environmental factors were also examined. CONCLUSIONS In this small group of YASBs with a medical home, easy access to care for medical conditions was the norm, with few individuals having recent emergency visits and almost all reporting at least a good overall QOL. Larger studies of YASBs are needed to evaluate the positive effects of medical homes on health and QOL in this population.

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Section: J Neurosurg Pediatr Volume 17 • February 2016 206mentioning

confidence: 86%

Section: J Neurosurg Pediatr Volume 17 • February 2016 206mentioning

confidence: 99%

Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida

Aguilera

Wood

Keeley³

et al. 2016

PED

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“…The most common of these include hydrocephaly and shunt complications, tethred cord, neurogenic bladder and bowel, compression wounds, hip dislocation, joint contractures, osteoporosis, learning disabilities, obesity, precocious puberty, latex allergy, and sexual problems. To prevent and treat these disorders, a rehabilitation program must be conducted by a team comprising various health workers, such as specialist physicians from related branches, physiotherapists, occupational therapists, speech therapists, nurses, and psychologists (31). Patients must be regularly followed up by a physical medicine and rehabilitation specialist from infancy.…”

Section: Rehabilitation and Follow-upmentioning

confidence: 99%

Spina Bifida and Rehabilitation

Ozaras¹

2015

Turk J Phys Med Rehab

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Spina bifida (SB) is the incomplete closure of the posterior elements of the vertebrae due to a developmental disorder. Among the causes of childhood disability, SB is the second most common cause after cerebral palsy. Generally, secondary motor neuron findings are seen below the lesion.The ambulation grade and the orthoses used by patients vary according to the level of the lesion. SB patients experience various complications throughout their lives. The purpose of SB rehabilitation is to prevent these complications and to keep the patient's functional status at the best possible level. Therefore, a rehabilitation program, starting at infancy and continuing during the lifetime, should be family centered and should be conducted with a multidisciplinary team.

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“…36 The spina bifida team typically includes a clinical nurse specialist or nurse practitioner; pediatric specialists in neurosurgery, orthopedics, urology, developmental pediatrics, and physical medicine; physical therapists; orthotists; psychologists; social workers; and health education professionals. All these specialists might not be available to all teams and for all clinic settings.…”

Section: The Role Of the Primary Care Provider In Ongoing Care In Thementioning

confidence: 99%

Providing a Primary Care Medical Home for Children and Youth With Spina Bifida

Burke¹,

Liptak²

2011

Pediatrics

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The pediatric primary care provider in the medical home has a central and unique role in the care of children with spina bifida. The primary care provider addresses not only the typical issues of preventive and acute health care but also the needs specific to these children. Optimal care requires communication and comanagement with pediatric medical and developmental subspecialists, surgical specialists, therapists, and community providers. The medical home provider is essential in supporting the family and advocating for the child from the time of entry into the practice through adolescence, which includes transition and transfer to adult health care. This report reviews aspects of care specific to the infant with spina bifida (particularly myelomeningocele) that will facilitate optimal medical, functional, and developmental outcomes.

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Optimizing health care for children with spina bifida

Cited by 60 publications

References 109 publications

Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida

Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida

Spina Bifida and Rehabilitation

Providing a Primary Care Medical Home for Children and Youth With Spina Bifida

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