Spina bifida – a follow-up study of neonates born from 1991 to 2001

Preis, Krzysztof; Swiatkowska‐Freund, M.; Jańczewska, Iwona

doi:10.1515/jpm.2005.062

Cited by 10 publications

(11 citation statements)

References 10 publications

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“…There are four main lesion levels: (1) cervical, which affects the nerves in the neck; (2) thoracic, which affects the nerves in the upper torso downward; (3) lumbar, which affects the nerves in the lower torso downward; and (4) sacral, which affects the nerves at the very bottom of the spine (Walker and Peterson 2008). Lesion level has been associated with survival and impairments, most frequently in sphincter control (Preis et al 2005;Verhoef et al 2006). In particular, most individuals with low lesion levels are ambulatory whereas most of those with higher level lesions do not walk unaided (Verhoef et al 2006).…”

Section: Introductionmentioning

confidence: 99%

Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families

Grosse¹,

Flores²,

Ouyang³

et al. 2009

J Child Fam Stud

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The well-being of caregivers of children with spina bifida and other conditions is an important topic. We interviewed the primary caregivers of 98 children aged 0-17 years with spina bifida sampled from a populationbased birth defects registry in Arkansas and the caregivers of 49 unaffected children. Measures of caregiver wellbeing were compared between the groups and by level of lesion (sacral, lower lumbar, and upper lumbar/thoracic). We performed linear and logistic regression analysis to test the associations controlling for other characteristics. Among caregivers of children with spina bifida, the average number of hours of sleep was significantly less than reported by other caregivers and was associated with lesion level among children less than 7 years of age. Significant associations, often varying by child age, were also found for the caregiver's reports of lower Quality of Well-Being (QWB) score, often feeling blue, rarely feeling happy, fair or poor health, lack of leisure days, and not hosting friends, but no significant association was found with not visiting friends. The intensive long-term care required by children with spina bifida, particularly by those with higher lesions, can negatively impact caregiver health and well-being. Support for these caregivers is needed.

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Section: Introductionmentioning

confidence: 99%

Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families

Grosse¹,

Flores²,

Ouyang³

et al. 2009

J Child Fam Stud

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“…Los niños presentaban similares antecedentes mórbidos y/o secuelas que en otras series 2,7,8,9,22,23 , sin embargo, existía un mayor porcentaje de escoliosis (100%) y de invalidez (85%) 2,7,8,9,22,23 , lo que podría explicar en cierta forma el porcentaje marginalmente mayor de Pimax demostrada en el estudio de Sherman y colaboradores 10 . Los estudios sobre función pulmonar en pacientes con MMC son muy limitados, en especial cuando se hace mención a la capacidad inspiratoria 10,11 .…”

Section: Discussionunclassified

“…Los casos analizados son de 12 a 14, nosotros enrolamos un número similar de sujetos. Este reducido núme-ro de casos no nos permite realizar otros análi-sis estadísticos confiables; por otro lado, la colaboración no siempre es posible por sus alteraciones neuromusculares y mentales 22 . Debemos considerar que no es una patología que con frecuencia se le de importancia a las consecuencias sobre el sistema respiratorio 2 hasta el momento en que se toman decisiones como corrección quirúrgica de escoliosis, lo que explica que todos nuestros niños presentaran algún grado de escoliosis cuando al momento de evaluar la Pimax.…”

Section: Discussionunclassified

Evaluación de la musculatura inspiratoria en niños con antecedentes de Mielomeningocele

Zenteno

González

et al. 2008

Rev. chil. pediatr.

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Evaluation of inspiratory musculature in children with myelomeningoceleBackground: Respiratory musculature function in patients with myelomeningocele (MMC) has not been evaluated sufficiently. Impairment in inspiratory muscles capacity could make patients prone to complications in clinical situations in which the respiratory work is increased. Objective: Evaluate inspiratory muscle function, measured with Maximal Inspiratory Pressure (MIP) in children with MMC. Method: In 13 children with MMC, MIP was obtained according to Black and Hyatt technique, using an aneroid gauge pressure. The results were compared to Szeinberg reference values by t Student, where p < 0.05 was considered significant. Results: The average age was 11.9 ± 2.8 years and 10 female. Expected MIP average was 112 ± 20 cmH 2 O, with lower limit of 92 cmH 2 O. The observed Pimax was 62 ± 23 cmH 2 O, 33% less than the inferior limit expected (p < 0.05). Conclusions: These children present a decrease of inspiratory musculature force, making them suceptible to muscle fatigue in pathological conditions, requiring a greater respiratory effort and difficulties in mechanical ventilation weaning. We suggest that a regular study of inspiratory muscles is neccessary in MMC patients, in order to define a respiratory musculature training necessity.

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“…If surveillance of NTD occurrence is challenging, incomplete, and geographically restricted, surveillance of health outcomes is even more limited, even in high‐resource countries . The most commonly reported health outcome is survival, though rarely longer than through infancy or childhood.…”

Section: Triple Surveillance: Tracking the Causal Chainmentioning

confidence: 99%

“…If surveillance of NTD occurrence is challenging, incomplete, and geographically restricted, surveillance of health outcomes is even more limited, even in high-resource countries. 1,[15][16][17][18][19][20][21][22][23][24][25] The most commonly reported health outcome is survival, though rarely longer than through infancy or childhood. Broader measures of health, such as morbidity, disability, and quality of life, are seldom assessed systematically, and when they are evaluated it is typically within a specific clinical cohort rather than on a population basis.…”

Section: Surveillance Of Outcomesmentioning

confidence: 99%

Triple surveillance: a proposal for an integrated strategy to support and accelerate birth defect prevention

Botto

Mastroiacovo²

2018

Annals of the New York Academy of Sciences

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Preventing neural tube defects (NTDs) easily qualifies as a high‐value opportunity to improve childhood survival and health: the unmet need is significant (major preventable burden), the intervention is transformative (providing sufficient folic acid), and delivery strategies (e.g., fortification) are effective in low‐resource countries. Yet, NTD prevention is lagging. Can public health surveillance help fix this problem? Critics contend that surveillance is largely unnecessary, that limited resources are best spent on interventions, and that surveillance is unrealistic in developing countries. The counterargument is twofold: (1) in the absence of surveillance, interventions will provide fewer benefits and cost more and (2) effective surveillance is likely possible nearly everywhere, with appropriate strategies. As a base strategy, we propose “triple surveillance:” integrating surveillance of cause (folate insufficiency), of disease occurrence (NTD prevalence), and of health outcomes (morbidity, mortality, and disability). For better sustainability and usefulness, it is crucial to refocus and streamline surveillance activities (no recreational data collection), weave surveillance into clinical care (integrate in clinical workflow), and, later, work on including additional risk factors and pediatric outcomes (increase benefits at low marginal cost). By doing so, surveillance becomes not a roadblock but a preferential path to prevention and better care.

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Spina bifida – a follow-up study of neonates born from 1991 to 2001

Cited by 10 publications

References 10 publications

Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families

Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families

Evaluación de la musculatura inspiratoria en niños con antecedentes de Mielomeningocele

Triple surveillance: a proposal for an integrated strategy to support and accelerate birth defect prevention

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