Functional outcome in young adults with spina bifida and hydrocephalus

Hetherington, Ross; Dennis, Maureen; Barnes, Marcia A.; Drake, James M.; Gentili, Fred

doi:10.1007/s00381-005-1231-4

Cited by 103 publications

(85 citation statements)

References 28 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Many other studies reported a similar association [2,3,11,12,16,28]. Davis et al [9] looked at 158 adolescents and reported 84% of the individuals were shunted.…”

Section: Discussionmentioning

confidence: 72%

“…Parents of the 50 subjects were interviewed in person during the MM clinic using two HRQOL outcome tools: the PedsQL TM Version 4.0 [7,[24][25][26][27] parent version for young children (ages 5-7), children (ages [8][9][10][11][12], and the teen report (ages [13][14][15][16][17][18]; and the PODCI Version 2.0 [10] parent form for children (ages 2-18). Because of concerns about time and length of the instrument, 22% of the parents declined to complete the PODCI questionnaire.…”

Section: Methodsmentioning

confidence: 99%

“…Children with more than four shunt revisions also have a lower functional level [2,11,12,28]. Transition from childhood to young adulthood can be an especially difficult developmental period for those with MM [14].…”

Section: Introductionmentioning

confidence: 99%

“…Johnson et al [14] found 72% of teens and young adults with MM had very limited participation in structured activities and most required assistive technology to aid in their mobility. Those with higher neurologic lesions often had associated decreased motor independence [11,16]. Obesity is a pervasive problem for youth with MM [1,12,23] and research has not adequately evaluated whether there is a relationship with HRQOL measures.…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

Flanagan¹,

Gorzkowski²,

Altıok³

et al. 2011

Clinical Orthopaedics &Amp; Related Research

View full text Add to dashboard Cite

Background To provide the best health care for individuals with myelomeningocele (MM), clinicians and researchers need to understand their health and functional status as well as quality of life. The literature is mixed regarding the relationship between motor level and health-related quality of life (HRQOL) for these individuals. Questions/purposes We compared the HRQOL of children with MM at the L2 and above and L3-5 motor level and to demonstrate how having a shunt, age, and body mass index affect HRQOL instruments for these two motor level groups. Methods We recruited 50 patients with MM (24 male, 26 female) with a mean age of 11.5 years (range, 5-18 years) and motor levels of L2 and above (n = 15) and L3-5 (n = 35). Guardians were interviewed using standardized functional and HRQOL tools (the Pediatric Quality of Life and the Pediatric Outcomes Data Collection Instrument); height, weight, presence of a shunt, ambulatory level, and body mass index were also collected. Results We found a decreased HRQOL score for children with MM in the L2 and above motor level compared with those in the L3-5 motor level group. HRQOL had no correlation with body mass index and limited correlation with age.

show abstract

“…Many other studies reported a similar association [2,3,11,12,16,28]. Davis et al [9] looked at 158 adolescents and reported 84% of the individuals were shunted.…”

Section: Discussionmentioning

confidence: 72%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

Flanagan¹,

Gorzkowski²,

Altıok³

et al. 2011

Clinical Orthopaedics &Amp; Related Research

View full text Add to dashboard Cite

show abstract

“…18 The presence of a CSF shunt and complications of shunt treatment are associated with compromised cognitive function as well as poorer prospects for survival. Hetherington et al 27 studied 31 adults with myelomeningocele and shunt-treated hydrocephalus who had verbal and performance IQs greater than 70. Patients were categorized according to myelomeningocele level: L-1 and above or L-2 and below.…”

Section: Hydrocephalusmentioning

confidence: 99%

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

Piatt¹

2010

PED

View full text Add to dashboard Cite

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.

show abstract

A description of spina bifida cases and co‐occurring malformations, 1976–2011

Parker

Yazdy

Mitchell

et al. 2013

American J of Med Genetics Pt A

View full text Add to dashboard Cite

Mandatory folic acid fortification in the United States corresponded with a decline in the prevalence of spina bifida (SB). The aim of this study was to describe the epidemiologic characteristics of isolated versus non-isolated SB cases in both pre- and post-fortification periods. SB cases in the Slone Epidemiology Center Birth Defects Study from 1976 to 2011 without chromosomal anomalies and syndromes were included. A maternal interview, conducted within 6 months of delivery, collected information on demographics, reproductive history, diet, and supplement use. Daily folic acid intake in the periconceptional period was calculated using both dietary and supplement information and categorized as low intake (<400 μg/day) or high intake (≥400 μg/day). SB cases (n=1170) were classified as isolated (80.4%) or non-isolated (19.1%). Non-isolated cases were further divided into subgroups based on accompanying major malformations (midline, renal, genital, heart, laterality). Compared to non-isolated cases, isolated cases were more likely to be white, non-Hispanic and have more than 12 years of education. Cases in the renal, genital, and heart subgroups had the lowest proportions of mothers with a high folic acid intake. The change from pre- to post-fortification was associated with a decrease in the proportion of isolated cases from 83% to 72%, though in both periods isolated cases were more likely to be female and their mothers were more likely to have high folic acid intake. These findings highlight the importance of separating isolated and non-isolated cases in etiologic research of SB.

show abstract

Functional outcome in young adults with spina bifida and hydrocephalus

Abstract: There was a relation between everyday mathematics, reading skills, and quality of life. The consequences of the physical, medical, and cognitive effects of spina bifida extend into young adulthood and have an impact on quality of life.

Cited by 103 publications

References 28 publications

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

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

A description of spina bifida cases and co‐occurring malformations, 1976–2011

Contact Info

Product

Resources

About