Non-Selective Intervention in Newborn Babies with Open Spina Bifida: The Outcome 30 Years on for the Complete Cohort

Hunt, Gillian

doi:10.1055/s-2008-1072302

Cited by 37 publications

(21 citation statements)

References 4 publications

(5 reference statements)

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“…For a majority of patients, the decline in neurologic function is secondary to a CSF shunt malfunction. However, this population of patients has a high incidence of multiple medical problems, including, but not exclusive to, the following: pressure sores, obesity, severe renal disease, hypertension, depression and visual impairment [9]. Physicians must be prepared to care for this unique group of young adults with chronic medical conditions.…”

Section: Resultsmentioning

confidence: 99%

“…In her 30-year follow-up report, Hunt [9]found a very interesting correlation between those young adults who were socially achieving (i.e. living independently, driving a car, employed or attending college) and had no prior history of raised intracranial pressure.…”

Section: Discussionmentioning

confidence: 99%

“…The commonest cause of death in this group of patients is renal failure. At a recent 30-year review of this cohort, Hunt [9]calculated a 1% risk of death per year from age 5 to 30 for all patients with open spina bifida.…”

Section: Discussionmentioning

confidence: 99%

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Spina Bifida Outcome: A 25-Year Prospective

Bowman

McLone

Grant³

et al. 2001

Pediatr Neurosurg

627

493

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Background: Open spina bifida is the most complex congenital abnormality compatible with long-term survival. This report outlines the 20- to 25-year outcome for our original cohort of patients with a myelomeningocele treated in a nonselective, prospective manner. Methods: Of the initial 118 children, 71 patients were available for our most recent review. Nineteen patients have been lost to follow-up and 28 patients have died. Data were collected on: motor level, shunt status, education/employment, seizure history, mobility, bladder/bowel continence, tethered cord, scoliosis, latex allergy, posterior cervical decompression, tracheostomy and/or gastrostomy tube. Results: Mortality (24%) continues to climb into young adulthood. Eighty-six percent of the cohort have cerebrospinal fluid diversion, with 95% having undergone at least one shunt revision. Thirty-two percent have undergone a tethered cord release, with 97% having an improvement or stabilization in their preoperative symptoms. Forty-nine percent have scoliosis, with 43% eventually requiring a spinal fusion. Sixteen patients (23%) have had at least one seizure. Eighty-five percent are attending or have graduated from high school and/or college. More than 80% of young adults have social bladder continence. Approximately 1/3 of patients are allergic to latex, with 6 patients having experienced a life-threatening reaction. Conclusion: At least 75% of children born with a myelomeningocele can be expected to reach their early adult years. Late deterioration is common. One of the greatest challenges in medicine today is establishing a network of care for these adults with spina bifida.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Spina Bifida Outcome: A 25-Year Prospective

Bowman

McLone

Grant³

et al. 2001

Pediatr Neurosurg

627

493

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“…Because of medical improvements in recent times, more patients born with spina bifida survive childhood and grow up into adulthood (Hunt 1999, Bowman et al 2001. For this group, being independent in activities of daily living is an important prerequisite for independent living and social participation.…”

mentioning

confidence: 99%

Functional independence among young adults with spina bifida, in relation to hydrocephalus and level of lesion

Verhoef

Barf

Post

et al. 2006

Develop Med Child Neuro

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Knowledge about the level of functional independence that can be expected in adulthood might support decisions on the treatment of newborn infants with spina bifida. This study determined functional independence among young adults with spina bifida and its relationships with pathological characteristics known from birth (hydrocephalus and level of lesion). Data were collected from medical records and by physical examination. Functional independence was assessed on six domains (self-care, sphincter control, transfers, locomotion, communication, and social cognition) using the Functional Independence Measure (FIM). Participants were 165 patients with spina bifida (69 males, 96 females; age range 16 to 25y, mean 20y 9mo [SD 2.9]; 117 with hydrocephalus). Patients without hydrocephalus were independent for all FIM domains except sphincter control, as were patients with hydrocephalus with a lesion level below L2. Most patients with hydrocephalus and a lesion at L2 or above were dependent as regards sphincter control (98%), locomotion (79%), and self-care (54%), and quite a few needed support in transfers (38%), social cognition (29%), and communication (15%).

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“…Followup studies were published at intervals by research general practitioners who were not involved directly in the care of the patients. [30][31][32][33][34][35][36][37][38][39][62][63][64] There was no neurosurgeon among the investigators. No patient was lost to follow-up.…”

Section: Prospective Studiesmentioning

confidence: 99%

Treatment of myelomeningocele: a review of outcomes and continuing neurosurgical considerations among adults

Piatt¹

2010

PED

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Object Myelomeningocele is the most severe congenital malformation of the CNS that is compatible with survival. From the time of the development of practical treatment for hydrocephalus in the late 1950s, affected individuals began to survive into adulthood in substantial numbers. Data on the neurological status of these individuals are sparse, as are descriptions of their continuing requirements for neurosurgical care. Methods A review of the literature was undertaken using the PubMed database maintained by the National Library of Medicine. Formal grading of the quality of evidence was not attempted, but methodological issues affecting validity or generalizability were noted. Results Observations from 2 major longitudinal studies of cohorts of patients treated without selection using contemporary neurosurgical techniques have been published at intervals beginning in the mid-1970s. Numerous cross-sectional, institutional reviews have focused on neurosurgical issues in adulthood: hydrocephalus, Chiari malformation Type II and syringomyelia, and secondary spinal cord tethering. The organization of medical services for adults with myelomeningocele has received limited study. Conclusions Surviving adults with myelomeningocele achieve a wide range of neurological and functional outcomes, the most critical and adverse determinant of which is symptomatic CSF shunt failure. From a neurosurgical standpoint, adults with myelomeningocele remain clinically active indefinitely, and they deserve periodic neurosurgical surveillance.

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Non-Selective Intervention in Newborn Babies with Open Spina Bifida: The Outcome 30 Years on for the Complete Cohort

Cited by 37 publications

References 4 publications

Spina Bifida Outcome: A 25-Year Prospective

Spina Bifida Outcome: A 25-Year Prospective

Functional independence among young adults with spina bifida, in relation to hydrocephalus and level of lesion

Treatment of myelomeningocele: a review of outcomes and continuing neurosurgical considerations among adults

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