Perception of secondary conditions in adults with spina bifida and impact on daily life

Wagner, Róbert; Linroth, Ronna; Gangl, Candice; Mitchell, Nancy; Hall, Michelle; Cady, Rhonda; Christenson, Matthew

doi:10.1016/j.dhjo.2015.03.012

Cited by 33 publications

(33 citation statements)

References 23 publications

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“…The economic, social, and psychological costs of caring for the needs of an affected child are large . For the affected individual, the consequences are lifelong and frequently under‐recognized . Most LMICs do not have adequate healthcare professionals or services to address the surgical and multidisciplinary needs of those born with NTDs.…”

Section: Discussionmentioning

confidence: 99%

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Estimates of global and regional prevalence of neural tube defects for 2015: a systematic analysis

Blencowe

Kancherla

Moorthie

et al. 2018

Annals of the New York Academy of Sciences

227

233

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Neural tube defects (NTDs) are associated with substantial mortality, morbidity, disability, and psychological and economic costs. Many are preventable with folic acid, and access to appropriate services for those affected can improve survival and quality of life. We used a compartmental model to estimate global and regional birth prevalence of NTDs (live births, stillbirths, and elective terminations of pregnancy) and subsequent under-5 mortality. Data were identified through web-based reviews of birth defect registry databases and systematic literature reviews. Meta-analyses were undertaken where appropriate. For 2015, our model estimated 260,100 (uncertainty interval (UI): 213,800-322,000) NTD-affected birth outcomes worldwide (prevalence 18.6 (15.3-23.0)/10,000 live births). Approximately 50% of cases were elective terminations of pregnancy for fetal anomalies (UI: 59,300 (47,900-74,500)) or stillbirths (57,800 (UI: 35,000-88,600)). Of NTD-affected live births, 117,900 (ß75%) (UI: 105,500-186,600) resulted in under-5 deaths. Our systematic review showed a paucity of high-quality data in the regions of the world with the highest burden. Despite knowledge about prevention, NTDs remain highly prevalent worldwide. Lack of surveillance and incomplete ascertainment of affected pregnancies make NTDs invisible to policy makers. Improved surveillance of all adverse outcomes is needed to improve the robustness of total NTD prevalence estimation, evaluate effectiveness of prevention through folic acid fortification, and improve outcomes through care and rehabilitation.

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Section: Discussionmentioning

confidence: 99%

“…[39][40][41] For the affected individual, the consequences are lifelong and frequently under-recognized. [42][43][44] Most LMICs do not have adequate healthcare professionals or services to address the surgical and multidisciplinary needs of those born with NTDs.…”

Section: Discussionmentioning

confidence: 99%

Estimates of global and regional prevalence of neural tube defects for 2015: a systematic analysis

Blencowe

Kancherla

Moorthie

et al. 2018

Annals of the New York Academy of Sciences

227

233

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“…This increased survival rate is due to medical innovations such as improved methods in shunting of hydrocephalus and the preservation of renal function through clean intermittent catheterization (CIC) . With the growing number of adults with spina bifida, research into the long‐term health needs of this population is warranted . Therefore, programs that help patients to achieve the required development when transitioning into adulthood not only leads to improved health outcomes but also increases self‐worth and independence in young patients with this condition .…”

Section: Introductionmentioning

confidence: 99%

“…3 With the growing number of adults with spina bifida, research into the long-term health needs of this population is warranted. 4 Therefore, programs that help patients to achieve the required development when transitioning into adulthood not only leads to improved health outcomes but also increases self-worth and independence in young patients with this condition. 5 However, among these transition goals, bladder and bowel management is heavily emphasized and often time consuming, whereas issues pertaining to sexual function and fertility are a challenging aspect because it is only in recent decades that most persons with spina bifida are surviving into adulthood.…”

Section: Introductionmentioning

confidence: 99%

Sexual function and qualify of life in women with spina bifida: Are the women with spina bifida satisfied with their sexual activity?

Choi

Kim

et al. 2018

Neurourology and Urodynamics

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“…The incidence of SB has decreased over the last decades and in Sweden the annual incidence of SB is estimated to 10 to 20 per 100 000 newborns/year 4 . Previously, the literature focused mainly on children and young adults with SB (≤25 years) and their transition to adulthood 5‐7 . Today, most persons with SB reach adulthood, thanks to the development of better medical treatments and there is a need to broaden the focus to include all adults with SB in a life‐long perspective 2 .…”

Section: Introductionmentioning

confidence: 99%

Voiding conditions, renal and bowel function in a cohort of adults with spina bifida

Ehrén

Lindbo

Gabrielsson

et al. 2020

Neurourology and Urodynamics

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Aim To map voiding patterns, degree of continence, use of drugs for voiding disorders, kidney function and surgical interventions but also the bowel function in a near‐total regional cohort of adults with spina bifida aged more than or equal to 18 years. Methods All individuals more than or equal to 18 years of age with spina bifida registered at a regional outpatient clinic (n = 219) were invited to participate, of which 196 persons were included. Bladder and bowel function were assessed according to questions used by the Nordic Spinal Cord Injury Registry by structured interviews and questionnaires in combination with review of patient charts including kidney function. Results Twenty percent of the patients voided spontaneously. Fifty‐four percent used clean intermittent catherization (CIC) and of these, 14% had also undergone augmentation of the bladder and/or implantation of an artificial sphincter or sling, 23% had undergone major urological surgery, and 3% had an indwelling catheter. Seventeen percent of patients voiding spontaneously or using CIC reported total continence but as many as 36% reported daily leakage. Anticholinergics was the most common drug, used by 21% in the total cohort. About 13% of the patients had a reduced kidney function but only 1.5% had end stage renal failure. Seventy‐three percent had problems emptying the bowel and 18% experienced fecal leakage weekly or even daily. Conclusion We found a large variation in problems with bladder and bowel function in this adult group of persons with spina bifida. A structured customized program for follow‐up seems necessary to optimize their health status in these areas.

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Perception of secondary conditions in adults with spina bifida and impact on daily life

Cited by 33 publications

References 23 publications

Estimates of global and regional prevalence of neural tube defects for 2015: a systematic analysis

Estimates of global and regional prevalence of neural tube defects for 2015: a systematic analysis

Sexual function and qualify of life in women with spina bifida: Are the women with spina bifida satisfied with their sexual activity?

Voiding conditions, renal and bowel function in a cohort of adults with spina bifida

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