Health care expenditures of children and adults with spina bifida in a privately insured U.S. population

Ouyang, Lijing; Grosse, Scott D.; Armour, Brian S.; Waitzman, Norman J.

doi:10.1002/bdra.20360

Cited by 146 publications

(122 citation statements)

References 12 publications

(12 reference statements)

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“…The disease is associated not only with early mortality [14], but also with greater need for health care services, in particular during the first years of life. In general, children aged from 1 to 17 years had 13 times higher medical expenditures than non-spina bifida children [15].…”

Section: Timely Supplementation Of Folate Prevents Birth Defectsmentioning

confidence: 93%

Folate status and health: challenges and opportunities

Obeid¹,

Oexle

Rißmann

et al. 2016

Journal of Perinatal Medicine

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Abstract:Each year approximately 2400 pregnancies develop folic acid-preventable spina bifida and anencephaly in Europe. Currently, 70% of all affected pregnancies are terminated after prenatal diagnosis. The prevalence of neural tube defects (NTDs) has been significantly lowered in more than 70 countries worldwide by applying fortification with folic acid. Periconceptional supplementation of folic acid also reduces the risk of congenital heart diseases, preterm birth, low birth weight, and health problems associated with child mortality and morbidity. All European governments failed to issue folic acid fortification of centrally processed and widely eaten foods in order to prevent NTDs and other unwanted birth outcomes. The estimated average dietary intake of folate in Germany is 200 μg dietary folate equivalents (DFE)/day. More than half of German women of reproductive age do not consume sufficient dietary folate to achieve optimal serum or red blood cell folate concentrations ( > 18 or 1000 nmol/L, respectively) necessary to prevent spina bifida and anencephaly. To date, targeted supplementation is recommended in Europe, but this approach failed to reduce the rate of NTDs during the last 10 years. Public health centers for prenatal care and fortification with folic acid in Europe are urgently needed. Only such an action will sufficiently improve folate status, prevent at least 50% of the NTD cases, reduce child mortality and morbidity, and alleviate other health problems associated with low folate such as anemia.

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Section: Timely Supplementation Of Folate Prevents Birth Defectsmentioning

confidence: 93%

Folate status and health: challenges and opportunities

Obeid¹,

Oexle

Rißmann

et al. 2016

Journal of Perinatal Medicine

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“…Total lifetime cost of a person with SB was estimated at $635,763 (in 2001-2003 $), with total direct costs of $279,210, and indirect costs of $356,553 (work productivity loss due to heightened morbidity and premature mortality). 4 Caregivers of children with SB worked an annual average of 7.5 to 11.3 hours less per week depending on the disability severity, which translated to lifetime costs of $133,755 in 2002 $. 7 Other studies have reported costs of US$294,000 per infant.…”

Section: -7mentioning

confidence: 99%

“…2 US incidence rates for SB range from 3 to 6 cases per 10,000 live births. 3,4 Infants with a NTD tend to have severe and life-long disabilities, and face the risk of psychosocial maladjustment. 5 Most are unable to function independently as adults, with common disabilities and medical problems including sight problems, dysfunction in the arms, epilepsy, bowel and bladder dysfunction.…”

mentioning

confidence: 99%

Burden of Illness for Neural Tube Defects: Canadian Perspective

Koren¹,

Nooten²,

Winnette³

et al. 2015

Pediatr Neonatal Nurs Open J

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Background: Neural Tube Defects (NTDs) are serious birth defects of which Spina Bifida (SB) is the most common. This paper aims to provide an estimate of the burden of illness for patients with SB and their caregivers in Canada, to assess the benefit of primary prevention. Methods: Individuals with NTDs were recruited through a hospital in Toronto. Using the clinic's database, individuals with SB and caregivers were screened to confirm eligibility. Data were collected using three types of questionnaires: sociodemographic, resource use and Quality of Life (QoL). Results: Of 310 questionnaires sent, 66 individuals with SB and 66 caregivers responded. Most individuals with SB had a lesion in the lumbar area. More than half had presence of hydrocephalus. In the past 10 years, hospitalisation was the most used health care resource and most visited a urologist in the previous year. Caregivers reported various health conditions resulting from their role as carer. QoL scores were standardised using a United States general population. Results demonstrated that individuals with SB are lower on the physical component score but better on the mental component score. Conclusions:The burden associated with individuals with SB in Canada is considerable. Our study highlights the need for primary prevention.

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“…10 Adults with myelomeningocele now account for greater health care expenditures and more hospital admissions than children with this condition. 66 Another factor impinging on the survival of newborns during this epoch was variation in criteria for treatment. A complete discussion of the historic controversy over selection of patients for active treatment is beyond the scope of this review, but understanding of contemporary survival statistics requires a minimum of context.…”

Section: Survivalmentioning

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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Health care expenditures of children and adults with spina bifida in a privately insured U.S. population

Abstract: Although per capita medical care utilization and expenditures are highest among children, adults constitute an important and growing share of the population living with spina bifida.

Cited by 146 publications

References 12 publications

Folate status and health: challenges and opportunities

Folate status and health: challenges and opportunities

Burden of Illness for Neural Tube Defects: Canadian Perspective

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

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