Comparing binary & ordinal definitions of urinary & stool continence outcomes: Data from the National Spina Bifida Patient Registry.

INTRODUCTION: The National Spina Bifida Patient Registry (NSBPR) assesses bladder and bowel incontinence using ordinal categories, but prior NSBPR analyses employed binary classification. Our aims were to 1) perform the first NSBPR analysis of bladder and bowel incontinence as ordinal outcomes to compare to the binary definition and subject variables; 2) explore the correlation of incontinence with undergarment usage, and 3) assess incontinence status following continence surgeries. METHODS: Data from NSBPR participants' most recent clinic visit from 2013 to 2020 were analyzed. Ordinal categories of incontinence were compared to previously used binary definitions. Incontinence surgical outcomes were analyzed for those with data at least three months post-operatively. Chi-square tests evaluated associations among categorical variables. Univariate and ordinal logistic regression models were used to test associations of ordinal incontinence status with patient and condition factors. Statistical tests were 2-sided; p values < 0.05 were considered significant. RESULTS: Analysis of 7217 individuals using ordinal incontinence outcomes showed little difference from previously used binary outcomes. The final multivariable logistic regression models with ordinal multinomial outcomes showed that associations of incontinence with age, sex, race/ethnicity, health insurance, level of lesion, and continence management technique were similar to prior studies. Among those reporting never being incontinent of both bladder and bowel, 14% reported using protective undergarments. Of the 500 individuals who had bladder outlet surgery, 38% reported never being incontinent of urine. Of 1416 individuals who had appendicostomy (ACE) bowel surgery, 48% reported never being incontinent of stool. DISCUSSION: Our current analysis showed that ordinal continence outcome classification had similar continence findings as previous studies using the binary definition of continence. Expanding the binary definition of continence to include monthly episodes of incontinence did not greatly increase the proportion of continent individuals and, therefore, would have not likely made meaningful differences in continence outcomes in prior NSBPR analyses. However, it is known that even mild incontinence can affect quality of life, therefore, capturing any level of incontiennce is of clinical importance. Confirmation of the association of continence outcomes with sociodemographic, condition-related, and interventional factors with both approaches further validates previous analyses using the binary definition of continence. CONCLUSION: The previously used binary definition of bladder and bowel continence appears robust. Undergarment choice was a poor surrogate for reported incontinence. After bladder and bowel continence surgeries, 38% and 48%, respectively, reported never being incontinent.

Adolescent/Young Adult Self-Management and Independence Self-Report Scale: Preliminary psychometric findings.

PURPOSE: This study examined preliminary psychometrics of the Adolescent/Young Adult Self-Management and Independence Self-Report Scale (AMIS II SR). METHODS: Adolescents and adults (N = 159; 13-38 years old) with spina bifida from two clinics and one community sample completed the AMIS II SR. The majority (83%) had myelomeningocele, and about half were female (51.6%). The sample included 44.7% White, 11.3% Black and over one-third Hispanic/Latino (38.4%) participants. Descriptive analyses and reliability were assessed; a confirmatory factor analysis (CFA) was conducted. RESULTS: Item-to-total correlations support the AMIS II SR total scale (r = .38-.79) and its two subscales: condition (r = .49-.67) and independent living (r = .49-.85). Internal consistency reliability was high (α = .91-.96) for the AMIS II SR total scale and subscales. A higher order CFA model that included independent living and condition self-management as first-order factors and a second-order overall self-management factor had excellent fit (RMSEA = 0.06; CFI = 0.97; TLI = 0.96). Descriptive analyses findings were reported. CONCLUSIONS: This study provides psychometric evidence for the use of the AMIS II SR total (overall) scale and subscales (condition and independent living) to assess self-management and independence.

Prophylactic Spinal Cord Untethering in Children with Spinal Dysraphism Undergoing Thoracolumbar Fusion for Scoliosis.

BACKGROUND: It remains unclear whether spinal cord untethering is necessary to reduce the chances of neurologic decline in children with myelomeningocele and complex closed spinal dysraphism who undergo thoracolumbar fusion for scoliosis. We sought to determine the neurologic and functional outcomes of children with spinal dysraphism undergoing spinal fusion for scoliosis with and without prophylactic spinal cord untethering. METHODS: Retrospective, single-center review of patients with spinal dysraphism treated with thoracolumbar fusion over the last 10 years (2009-2019) with or without prophylactic spinal cord untethering. RESULTS: Seventeen patients with myelomeningocele and complex closed spinal dysraphism underwent spinal fusion for scoliosis. Mean age at time of surgery was 13.9 years. Prophylactic spinal cord untethering was performed in 8 of 17 (47%) patients. The change in Cobb angle after surgery was similar between the 2 groups (19.4° untethered vs. 19.9° no untethering). The ambulatory status was similar between the groups, with 37% of the untethered cohort and 44% of the non-untethered cohort being community or household ambulators. There were no changes in intraoperative motor or sensory evoked potentials in any patient during fusion surgery. No patient had a change in motor level or ambulatory status after scoliosis surgery. CONCLUSIONS: Our data suggest that prophylactic spinal cord untethering in children with spinal dysraphism undergoing thoracolumbar fusion for scoliosis may not be necessary in patients with moderate curvatures. Our conclusions are limited by the small sample size. A larger review of registry data may yield more powerful conclusions on the necessity of prophylactic spinal cord untethering in this patient population.

Trends in the early care of infants with myelomeningocele in the United States 2012-2018.

PURPOSE: The early care of children with spina bifida has changed with the increasing availability of fetal surgery and evidence that fetal repair improves the long-term outcomes of children with myelomeningocele. We sought to determine current trends in the prevalence and early care of children with myelomeningocele using a national administrative database. METHODS: This is a retrospective, cross-sectional cohort study of infants with spina bifida admitted within the first 28 days of life using the 2012-2018 Healthcare Cost and Utilization Project National Inpatient Database. Patients with spina bifida were identified by ICD code and stratified into a cohort with a coded neonatal repair of the defect and those without a coded repair. This database had no identifier specific for fetal surgery, but it is likely that a substantial number of infants without a coded repair had fetal surgery. RESULTS: We identified 5,090 patients with a coded repair and 5,715 without a coded repair. The overall prevalence of spina bifida was 3.94 per 10,000 live births. The percentage of patients without neonatal repair increased during the study period compared to those with repair (p = 0.0002). The cohort without neonatal repair had a higher risk of death (p < 0.001), prematurity (p < 0.001), and low birth weight (p < 0.001). More shunts were placed in patients who underwent neonatal repair (p < 0.001). Patients without neonatal repair were less likely to have public insurance (p = 0.0052) and more likely to reside in zip codes within the highest income quartile (p = 0.0002). CONCLUSIONS: The prevalence of spina bifida from 2012 to 2018 was 3.94 per 10,000 live births, with an increasing number of patients without neonatal repair of the defect, suggesting increased utilization of fetal surgery. Patients without neonatal repair had a higher risk of death, prematurity, and low birth weight but were more likely to have commercial insurance and reside in high-income zip codes.

Intercountry adoption of children with complex health conditions and disabilities: A systematic review.

PURPOSE: The rate of children with complex health conditions or disabilities who are intercountry adopted (ICA) is increasing. These children have unique physical, developmental, and psychological needs that must be addressed as they integrate into adoptive families. The purpose of this systematic review is to identify considerations nurses must recognize when caring for children with complex health conditions or disabilities who are ICA and their families. DESIGN AND METHODS: A systematic literature review in accordance with the PRISMA guidelines was conducted. Four databases (PubMed, PsycINFO, Web of Science, and ERIC) located 365 articles about intercountry adoption and complex health conditions or disability. Articles that were non-English language, focused on attachment disorder or infectious disease, book chapters, dissertations, or case studies were excluded. Sixteen articles met inclusion criteria and informed this review. RESULTS: The systematic review identified eight themes: primary care resources, interdisciplinary care teams, cost, developmental difficulties, nutritional challenges, mental health issues, parental need for knowledge, and parental need for support. These themes correspond to nursing assessments that should be conducted during clinic visits for children with complex health conditions or disabilities who are ICA. PRACTICE IMPLICATIONS: This systematic review demonstrates that a multidisciplinary approach is necessary to address the needs of the child diagnosed with a complex health condition or disability and their family in the context of intercountry adoption. Children with a complex health condition or disability who are ICA have unique needs and require individualized care planning to maximize growth and developmental potential. Adoption is a life-long process and adjustment is complicated by the medical needs that children with complex health conditions or disabilities experience. Parents will benefit from additional support and education as they integrate a new family member while also learning about the medical care needs of a child with a complex health condition or disability.

Sociodemographic disparities in fetal surgery for myelomeningocele: a single-center retrospective review.

OBJECTIVE: Fetal surgery for myelomeningocele has become an established treatment that offers less risk of requiring a ventricular shunt and improved functional outcomes for patients. An increasing body of literature has suggested that social determinants of health have a profound influence on health outcomes. The authors sought to determine the socioeconomic and racial and ethnic backgrounds of patients who were treated with fetal surgery versus those who underwent postnatal repair. METHODS: Demographic data, the method of myelomeningocele repair, insurance status, and zip code data for patients entered into the National Spina Bifida Patient Registry (NSBPR) from Children's Wisconsin were collected. The zip code was used to determine the Distressed Communities Index (DCI) score, a composite socioeconomic ranking with scores ranging from 0 (no distress) to 100 (severe distress). The zip code was also used to determine the median household income for each patient based on the US Census Bureau 2013-2017 American Community Survey 5-year estimates. RESULTS: A total of 205 patients were identified with zip code and insurance data. There were 23 patients in the fetal surgery group and 182 patients in the postnatal surgery group. All patients were born between 2000 and 2019. Patients in the fetal surgery group were more likely to have commercial insurance (100% vs 52.2%, p < 0.001). Fetal surgery patients were also more likely to be non-Hispanic White (95.7% vs 68.7%, p = 0.058), just missing the level of statistical significance. Patients who underwent fetal surgery tended to reside in zip codes with a higher median household income (mean $66,507 vs $59,133, p = 0.122) and less-distressed communities (mean DCI score 31.3 vs 38.5, p = 0.289); however, these differences did not reach statistical significance. CONCLUSIONS: Patients treated with fetal surgery were more likely to have commercial insurance and have a non-Hispanic White racial and ethnic background. The preliminary data suggest that socioeconomic and racial and ethnic disparities may exist regarding access to fetal surgery, and investigation of a larger population of spina bifida patients is warranted.

Down There - Pediatric Nurses, Constipation, and Rectal Interventions.

BACKGROUND: Pediatric nurses care for hospitalized children with constipation on a daily basis. However, very little is reported in the literature about the experiences of pediatric nurses when providing care to hospitalized children who are constipated. A rarely discussed aspect of pediatric care is that of sensitive touch which is required during rectal interventions such as enema and suppository administration. The purpose of this qualitative study was to investigate the experiences of pediatric nurses regarding the identification & management of constipation in hospitalized children. A theme, "down there," emerged from the larger study and revealed pediatric nurses' experiences with sensitive touch in hospitalized children with constipation. METHODS: This phenomenological investigation utilized in depth interviews with 21 pediatric nurses to explore their experiences of caring for hospitalized children with constipation. RESULTS: The concept sensitive touch, a touch that is applied to an intimate area of the body, emerged as a theme from the interviews. There were several subthemes. Nurses discussed assessment as "I would not automatically do a rectal check;" and incorporated development as "an infant is totally different from a 5 or 6-year-old; developing a "trustful rapport" during interventions; ensuring "comfort and privacy" as strategies during rectal interventions; and performing a "dress rehearsal" when teaching orientees about rectal interventions. CONCLUSIONS: Pediatric nurses describe a variety of experiences when using sensitive touch in children. Although there is high awareness of the need for comfort and privacy, pediatric nurses' hesitation to intervene using rectal maneuvers could contribute to ongoing constipation in hospitalized children.

Neurogenic bowel treatments and continence outcomes in children and adults with myelomeningocele.

PURPOSE: Neurogenic bowel dysfunction (NBD) is a common comorbidity of myelomeningocele (MMC), the most common and severe form of spina bifida. The National Spina Bifida Patient Registry (NSBPR) is a research collaboration between the CDC and Spina Bifida Clinics. Fecal continence (continence) outcomes for common treatment modalities for NBD have not been described in a large sample of individuals with MMC. NSBPR patients with MMC and NBD were studied to determine variation in continence status and their ability to perform their treatment independently according to treatment modality and individual characteristics. METHODS: Continence was defined as < 1 episode of incontinence per month. Eleven common treatments were evaluated. Inclusion criteria were established diagnoses of both MMC and NBD, as well as age ⩾ 5 years (n= 3670). Chi-square or exact statistical tests were used for bivariate analyses. Logistic regression models were used to estimate the odds of continence outcomes by age, sex, race/ethnicity, level of motor function, and insurance status. RESULTS: At total of 3670 members of the NSBPR met inclusion criteria between November 2013 and December 2017. Overall prevalence of continence was 45%. Prevalence ranged from 40-69% across different treatments. Among continent individuals, 60% achieved continence without surgery. Antegrade enemas were the most commonly used treatment and had the highest associated continence rate. Ability to carry out a treatment independently increased with age. Multivariable logistic regression showed significantly higher odds of continence among individuals aged ⩾ 12 years, female, non-Hispanic white, and with private insurance.

Safety Profile of Children in an Enclosure Bed.

PURPOSE: Pediatric nurses care for many children in the hospital setting whose behavioral challenges can impact safety. One intervention utilized to prevent injury and improve safety when caring for this population of children has been the enclosure bed. Scant information was found in the literature that discusses the use of the enclosure bed in the pediatric setting. The purpose of this article is to examine the use of the enclosure bed in the pediatric setting. A secondary aim is to identify the population of children where an enclosure bed was implemented and the safety factors associated with use of the enclosure bed. METHODS: An exploratory retrospective chart review was conducted of 208 pediatric enclosure bed encounters in an acute care setting over a 2-year period. Variables included demographics, length of stay and bed use, behavioral medications, restraint and sitter usage, skin breakdown, fall risk, and falls. RESULTS: Three categories of children based on cognitive function, no cognitive impairment, new cognitive impairment, and congenital cognitive impairment, were extracted from the chart review. Significant differences were found between groups of children and between safety variables observed with enclosure bed use. Children with new-onset cognitive impairment were more likely to incur falls, skin breakdown, and injury during use of the enclosure bed. CONCLUSION: Use of the enclosure bed is a reasonable intervention in certain children to ensure their safety in the hospital setting. This information will enhance nursing knowledge related to providing safe and optimal care of this challenging population of children.

Pediatric skin care: what do nurses really know?

PURPOSE: The purpose of this study was to explore pediatric nurses' knowledge of pressure ulcer prevention, investigate their beliefs and practices, and identify the barriers and facilitators to providing evidence-based pressure ulcer preventive practices. DESIGN AND METHODS: An exploratory, descriptive, and cross-sectional survey was taken of registered nurses in a freestanding children's hospital. RESULTS: Nurses have adequate knowledge of general pressure ulcer prevention; however, they struggle with individualization. Further, analysis revealed that nursing knowledge did not always correlate with nursing practice. PRACTICE IMPLICATIONS: Nurses require education on individualized interventions and access to user-friendly, interactive, and comprehensive resources, including unit-based champions and order sets.

Nurse researchers in children's hospitals.

Little is known about the role of nurse researchers (NRs) and the structure of nursing research programs in children's hospitals in the United States. This descriptive study obtained survey data from 33 NRs. Data suggest that the NR role is emerging and has both commonalities and unique components when compared with the previous studies of NRs in adult hospitals. Most participants have been in their position for less than 4 years. Conducting research, having staff development related to research, and facilitating evidence-based practice or research were common responsibilities. The structure of nursing research programs impacts both the NRs and the program outcomes.

Readiness for discharge in parents of hospitalized children.

Parental preparation for a child's discharge from the hospital sets the stage for successful transitioning to care and recovery at home. In this study of 135 parents of hospitalized children, the quality of discharge teaching, particularly the nurses' skills in "delivery" of parent teaching, was associated with increased parental readiness for discharge, which was associated with less coping difficulty during the first 3 weeks postdischarge. Parental coping difficulty was predictive of greater utilization of posthospitalization health services. These results validate the role of the skilled nurse as a teacher in promoting positive outcomes at discharge and beyond the hospitalization.

Investigating time to void after lower-extremity orthopedic surgery in a pediatric population.

PURPOSE: This study aims to determine the time frame of postoperative bladder volume assessment in order to identify children at risk for urinary retention in a pediatric orthopedic population. DESIGN AND METHODS: This is a descriptive and nonexperimental study. Variables included age, sex, length of anesthesia, type of analgesia, analgesia delivery, bladder volume, and intravenous fluid rate. RESULTS: Twenty-nine percent of the children (n = 38) required straight catheterization. The average length of time to bladder emptying was 5 hr. There were significant correlations (p < .05) between several variables. PRACTICE IMPLICATIONS: The standard practice of waiting 8 hr before assessment of voiding was not supported in this study.