Skin Ulcers and Mortality Among Adolescents and Young Adults With Spina Bifida in South Carolina During 2000-2010

Abstract

The authors investigated 48 deaths (7% death rate) among 690 adolescents and young adults with spina bifida in South Carolina during 2000–2010. The authors used Medicaid and other administrative data and a retrospective cohort design that included people with spina bifida identified using ICD-9 codes. Cox regression models with time-dependent and time-invariant covariates, and Kaplan–Meier survival curves were constructed. The authors found that 21.4% of the study group had a skin ulcer during the study period and individuals with skin ulcers had significantly higher mortality than those without ulcers (P < .0001). People who had their first skin ulcer during adolescence had higher mortality than those who had the first skin ulcer during young adulthood (P = .0002; hazard ratio = 10.70, 95% confidence interval for hazard ratio: 3.01, 38.00) and those without skin ulcers, controlling for other covariates. This study showed that age at which individuals first had a skin ulcer was associated with mortality.

Bowel management and continence in adults with spina bifida: Results from the National Spina Bifida Patient Registry 2009–15

“…Digital stimulation and disimpaction were used more frequently by adults and could be a reflection that these are older forms of management or that adults are less bothered by these techniques. Colostomy is typically a last resort in bowel management and is often done to manage severe sacral skin ulcers; its greater prevalence in adults was not unexpected as adults are known to have significant morbidity and mortality from skin ulcers [13,14]. The use of antegrade enema was significantly greater in adolescents, and the higher rates of procedures to allow this was accordingly higher in this cohort.…”

Spina bifida.

“…Individuals with SB have difficulty with sensation, ambulation, and bowel and bladder control (Lindsay et al, 2016;Patel et al, 2019). Individuals with SB have a wide variety of health challenges, such as hydrocephalus, surgeries for shunt and shunt revision, bladder control with urine and fecal incontinence, potential for urinary tract infections that could lead to kidney disease and failure, skin ulcers, neurological difficulties (e.g., seizures in children with shunts), and lower body paralysis (Cai et al, 2016). Some individuals with SB have abnormal breathing patterns and sleep apnea (Patel et al, 2019).…”

Survival and causes of death in adults with spina bifida in Sweden: a population-based case-control study

“…A higher incidence of genitourinary cancers has also been reported; however, it is still an object of study. Individuals with SB also have an increased risk of secondary conditions, such as pressure injuries, hypertension, metabolic syndrome, and urological complications ( 5 , 10 – 14 ). In the UK, the mortality rate of people with SB between 5 and 40 years was found to be 10 times higher than in the general population, and approximately half of the deaths were reported to be sudden and unexpected ( 5 ).…”

“…In the UK, the mortality rate of people with SB between 5 and 40 years was found to be 10 times higher than in the general population, and approximately half of the deaths were reported to be sudden and unexpected ( 5 ). Mortality has also been found to be associated with factors such as degree of disability, type of SB, level of lesion, presence of a shunt and Arnold Chiari malformation II, socio-economic status, and parental education ( 5 , 14 – 16 ). It is important to determine the causes of mortality and survival rates among adults with SB because if there is premature death caused by preventable causes, proactive and systematic work across the lifespan could potentially increase survival rates.…”