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Williams, Phoebe D.; Williams, Arthur R.; Graff, J. Carolyn; Hanson, Sandra; Stanton, Anne; Hafeman, Carol; Liebergen, Adrienne; Leuenberg, Karla; Setter, Robyn Karlin; Ridder, Lavonne; Curry, Heather; Barnard, Martha Underwood; Sanders, Susan

doi:10.1023/a:1020401122858

Cited by 76 publications

(3 citation statements)

References 6 publications

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“…Approximately 4,500 pregnancies every year in Europe result in a baby or foetus affected by an NTD, and in the USA, 2,500 live births are affected by NTDs each year [51]. In China, 100,000 infants are born annually with NTDs [7].…”

Section: Introductionmentioning

confidence: 99%

Economic burden of neural tube defects and impact of prevention with folic acid: a literature review

Yi¹,

et al. 2011

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Neural tube defects (NTDs) are the second most common group of serious birth defects. Although folic acid has been shown to reduce effectively the risk of NTDs and measures have been taken to increase the awareness, knowledge, and consumption of folic acid, the full potential of folic acid to reduce the risk of NTDs has not been realized in most countries. To understand the economic burden of NTDs and the economic impact of preventing NTDs with folic acid, a systematic review was performed on relevant studies. A total of 14 cost of illness studies and 10 economic evaluations on prevention of NTDs with folic acid were identified. Consistent findings were reported across all of the cost of illness studies. The lifetime direct medical cost for patients with NTDs is significant, with the majority of cost being for inpatient care, for treatment at initial diagnosis in childhood, and for comorbidities in adult life. The lifetime indirect cost for patients with spina bifida is even greater due to increased morbidity and premature mortality. Caregiver time costs are also significant. The results from the economic evaluations demonstrate that folic acid fortification in food and preconception folic acid consumption are cost-effective ways to reduce the incidence and prevalence of NTDs. This review highlights the significant cost burden that NTDs pose to healthcare systems, various healthcare payers, and society and concludes that the benefits of prevention of NTDs with folic acid far outweigh the cost. Further intervention with folic acid is justified in countries where the full potential of folic acid to reduce the risk of NTDs has not been realized.

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Section: Introductionmentioning

confidence: 99%

Economic burden of neural tube defects and impact of prevention with folic acid: a literature review

Yi¹,

et al. 2011

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“…However, the rate of decline has not been as dramatic as expected [ 25 – 29 ] and despite measures to reduce NTDs, approximately 4,500 pregnancies every year in Europe result in a live birth, stillbirth, or termination where a baby or fetus has been affected by an NTD [ 29 ], and in the US there are 2,500 live births of children with NTDs each year [ 30 ].…”

Section: Introductionmentioning

confidence: 99%

A Review of the Social, Psychological, and Economic Burdens Experienced by People with Spina Bifida and Their Caregivers

et al. 2013

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IntroductionDespite measures to reduce the incidence of neural tube defects (NTDs), the rate of decline has not been as dramatic as expected. At least 300,000 newborns worldwide are known to be affected by NTDs each year. This comprehensive literature review summarizes the human and economic burden of NTDs to patients and caregivers, with particular focus on spina bifida (SB).MethodsPubMed, PsycINFO, and Embase were searched for studies from January 1976 to November 2010 that included clinical terms, such as NTD, and at least one patient-reported outcome or cost term. A conceptual model was also developed.ResultsAreas of peoples’ lives affected by SB included physical and role functioning, activities of daily living, bodily pain, vitality, emotional functioning, mental health, self-esteem, self-image, social functioning, relationships, and sexual functioning. Areas of caregivers’ lives affected included activities of daily living, work impact, time consumption, parental responsibilities (including responsibilities to other children), confidence, feelings and emotions, mental health, stress, social impact, psychological adjustment, relationships (with SB child, siblings, other family members), social support, coping strategies, and termination decisions. Cost burdens on patients and caregivers also include out-of-pocket costs, lost wages, or household production due to increased morbidity and mortality, transportation and other nonmedical costs.ConclusionsThis review highlights the need to provide care and support to individuals with SB and their caregivers. Results also emphasize the importance of effective long-term public health campaigns and/or newer strategies to prevent NTDs, such as SB.

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“…An integrative review that synthesized studies about sibling adjustment to childhood chronic illness identified how siblings learned knowledge about the illness from their parents (Lummer-Aikey & Goldstein, 2021). While siblings expressed wanting to learn more information about the illness of their sibling, parents may decide how much information to share based on the age of the siblings and the type of diagnosis (Lummer-Aikey & Goldstein, 2021;Plumridge et al, 2011;Williams et al, 2002). Sibling participants further described how their mothers often provided information and resolved conflicts in the sibling relationship.…”

Section: Discussionmentioning

confidence: 99%

“Filling in the gap”: A qualitative case study about identity construction of siblings of youth with a neurodisability

Nguyen,

Jack,

Davis

et al. 2024

Journal of Adolescence

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IntroductionIn families of children with a neurodisability, siblings have unique experiences that can shape their identity. There is limited information about the developmental process of how siblings form their identity. This study aims to understand the identity construction of young siblings who have a sibling with a neurodisability.MethodsAs part of a patient‐oriented research program, we engaged with our Sibling Youth Advisory Council in Canada. In this qualitative case study, data from semi‐structured interviews augmented by photo elicitation and graphic elicitation of relational maps were analyzed using reflexive thematic analysis.ResultsNineteen sibling participants (median age = 19 years, range = 14–33 years) reflected on the uniqueness of their role during childhood. During adolescence and emerging adulthood, they became closer with their sibling with a neurodisability and increased communication with their parents about how to care for their sibling with a neurodisability. These experiences influenced how they explored and began to reconcile their sibling identity with their professional and social identities.ConclusionSiblings of youth with a neurodisability discover their unique identity and require support in this developmental process. Future interventions could evaluate how supports for siblings can have an impact on the positive development of their identity.

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Cited by 76 publications

References 6 publications

Economic burden of neural tube defects and impact of prevention with folic acid: a literature review

Economic burden of neural tube defects and impact of prevention with folic acid: a literature review

A Review of the Social, Psychological, and Economic Burdens Experienced by People with Spina Bifida and Their Caregivers

“Filling in the gap”: A qualitative case study about identity construction of siblings of youth with a neurodisability

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