Kathryn Smith

Design and Methodological Considerations of the Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida

PURPOSE Care of children with spina bifida has significantly advanced in the last half century, resulting in gains in longevity and quality of life for affected children and caregivers. Bladder dysfunction is the norm in patients with spina bifida and may result in infection, renal scarring and chronic kidney disease. However, the optimal urological management for spina bifida related bladder dysfunction is unknown. MATERIALS AND METHODS In 2012 the Centers for Disease Control and Prevention convened a working group composed of pediatric urologists, nephrologists, epidemiologists, methodologists, community advocates and Centers for Disease Control and Prevention personnel to develop a protocol to optimize urological care of children with spina bifida from the newborn period through age 5 years. RESULTS An iterative quality improvement protocol was selected. In this model participating institutions agree to prospectively treat all newborns with spina bifida using a single consensus based protocol. During the 5-year study period outcomes will be routinely assessed and the protocol adjusted as needed to optimize patient and process outcomes. Primary study outcomes include urinary tract infections, renal scarring, renal function and bladder characteristics. The protocol specifies the timing and use of testing (eg ultrasonography, urodynamics) and interventions (eg intermittent catheterization, prophylactic antibiotics, antimuscarinic medications). Starting in 2014 the Centers for Disease Control and Prevention began funding 9 study sites to implement and evaluate the protocol. CONCLUSIONS The Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida began accruing patients in 2015. Assessment in the first 5 years will focus on urinary tract infections, renal function, renal scarring and clinical process improvements.

Health Care Access for Children With Special Health Care Needs in California

Objectives: This study examines health care access for children with special health care needs (CSHCN) in California, one of the nation’s most populous and diverse states. Methods: Data are from the National Survey of Children with Special Health Care Needs (NS-CSHCN), a nationally representative survey of access for U.S. children fielded by the National Center for Health Statistics (NCHS). California CSHCN and those in California’s Medicaid program are compared with CSHCN elsewhere on child health need, family enabling factors, health care enabling factors, system outcomes, and children’s experiences with care. Multivariable analysis identifies family and health care factors associated with system outcomes and children’s experiences with health care. Results: California parents generally report poorer experiences with care, lower performance on systems outcomes, and fewer health care and family enabling factors. The magnitude of disparity is greatest for CSHCN in Medi-Cal, although lower-income privately insured CSHCN in California also have poorer access than their counterparts in other states. Among CSHCN in Medicaid, greater condition impact and adolescent age are associated with poorer experiences in California for most measures. Disparities between California and other states persist even adjusting for family and health care factors in multivariable analysis. Conclusions: Performance gaps in California stem from population differences and apparent administrative barriers. Several statewide initiatives are addressing system barriers through supports to providers and information to parents.

A survey of California nursing programs: admission and accommodation policies for students with disabilities.

A survey study was conducted to investigate the admission and accommodation policies of nursing programs for students with disabilities. Surveys were sent to 130 Board of Registered Nursing–approved nursing programs throughout California. Sixty-five (50%) of the surveys were returned and completed. Of the major findings of the study, learning disabilities were the most common type of disability reported. Testing time accommodations and a quiet environment were the most frequently requested and received accommodations. Seventy-two percent of nursing programs reported they have encountered students with disabilities who do not self-disclose or ask for accommodations. Most accommodations requested and received by students were classroom related. Few students with physical disabilities were reported as enrolled in nursing programs, possibly suggesting that prospective students with physical disabilities may not meet the physical requirements for nursing programs. Other reasons for underenrollment of students with disabilities should be explored, as well as reasons for nondisclosure.

Is continence status associated with quality of life in young children with Spina Bifida

PURPOSE To evaluate the relationship between child- and parent-reported quality of life (QOL) and bowel and bladder continence among young children with spina bifida (SB). METHODS 104 children ages 5-12 years and one of their parents/guardians completed the Pediatric Quality of Life Inventory - Generic Form (PedsQL; parent and child) and the Quality of Life in Spina Bifida Questionnaire (QOLSBQ, parent only). Data on continence, child age, and condition-specific variables were obtained by chart review. RESULTS Parent and child QOL scores (on all measures of QOL) were positively correlated; parents rated child QOL lower than childrens self report. QOL scores did not differ based on continence status. Total PedsQL scores were associated with age and mobility based on child report and with mobility based on parent report. CONCLUSIONS QOL may not be affected by continence status among young children with SB, though demographic (i.e., age) and condition-specific (i.e., functional mobility status) variables appear relevant. Additional research is needed to further evaluate condition-specific variables, other protective variables, and possible measurement issues that influence QOL in young children with SB.

Anticipatory guidance for the employed breast-feeding mother

A significant number of women are combining childrearing and career. Mothers who opt to breast-feed while employed may demonstrate increased breast-feeding success when supported by knowledgeable counseling. This article discusses specific techniques for maintaining maternal fluid intake; pumping, storing and preparing breast milk; wardrobe planning; and personal hygiene. Knowledge of these measures will provide the basis for anticipatory guidance for mothers who wish to balance the demands of breast-feeding and employment.

Cultural Considerations in the Care of Children with Spina Bifida

Spina bifida occurs when the neural tube fails to close during early fetal development, resulting in a range of neural tube defects (NTDs). The cause of spina bifida is not fully understood, but scientists believe that NTDs are the result of genetic and environmental factors acting simultaneously. The Centers for Disease Control reports that spina bifida and other NTDs occur more frequently in some ethnic groups, such as Hispanic people, than in others. The United States is increasingly multicultural and diverse, and it is becoming more difficult to categorize individuals into a single racial/ethnic group. This article uses the term ethnicity as defined by the Institute of Medicine and avoids using race unless part of a particular study.

The effectiveness of bowel and bladder interventions in children with spina bifida

Using the World Health Organization International Classification of Functioning, Disability and Health (ICF), the aim of this study was to identify effective strategies for managing urinary and bowel complications resulting from spina bifida.

Brief Report: Adolescents' Reasons for Participating in a Health Care Transition Intervention Study.

PURPOSE This study investigated the reasons adolescents with spina bifida consented or assented to participate in a randomized controlled prospective health care transition intervention study. METHODS Sixty-five adolescents with spina bifida (SB), ages 14 to 18 years, who had previously participated in the Transition Preparation Training Program (TPT) study were recruited for the current study. A total of 26 consents/assents were obtained; a total of 25 questionnaires were returned (11 treatment; 14 control). Study findings were from a sample of 25 adolescents, aged 14 to 20 years who had participated in a randomized controlled prospective study entitled the Transition Preparation Training Program (TPT). Content analysis was used to code and analyze data. RESULTS Study findings revealed adolescents indicated several reasons for choosing to participate in the research study. Major reasons cited for their participation were related to the desire to learn more about their condition and for altruistic purposes. Numerous reasons were offered by respondents as to why adolescents declined to participate in the research study; feelings of discomfort and issues of privacy were cited. Sixty-four percent of the respondents indicated the offer of a research incentive did not affect their decision to participate in the TPT study. Other findings are reported as to the use of research incentives and future recruitment recommendations. CONCLUSIONS Youth shared a number of reasons and insights about recruitment strategies that may be helpful for future research efforts, especially those studies involving adolescents with special health care needs who participate in health care transition research.

Factors Associated with Mobility Outcomes in a National Spina Bifida Patient Registry

ObjectiveTo provide descriptive data on ambulatory ability and muscle strength in a large cohort of individuals with spina bifida enrolled in a National Spina Bifida Patient Registry and to investigate factors associated with ambulatory status. DesignCross-sectional analysis of data from a multisite patient registry. ResultsDescriptive analysis of mobility variables for 2604 individuals with spina bifida aged 5 and older are presented from 19 sites in the United States. Analysis of a subset of National Spina Bifida Patient Registry data from 380 individuals from 3 sites accompanied by data from a specialized spina bifida electronic medical record revealed that those with no history of a shunt, lower motor level, and no history of hip or knee contracture release surgery were more likely to be ambulatory at the community level than at the household or wheelchair level. ConclusionThis study is the first to examine factors associated with ambulatory status in a large sample of individuals with myelomeningocele and nonmyelomeningocele subtypes of spina bifida. Results of this study delineate the breadth of strength and functional abilities within the different age groups and subtypes of spina bifida. The results may inform physicians of the characteristics of those with varying ambulatory abilities. To Claim CME Credits:Complete the self-assessment activity and evaluation online at http://www.physiatry.org/JournalCME CME Objectives:Upon completion of this article, the reader should be able to: (1) Understand the scope of mobility limitations in individuals with spina bifida; (2) Appreciate the impact of certain factors on themobility status of individuals with spina bifida; and (3) Use knowledge of factors affecting mobility in individuals with spina bifida to direct treatment. Level:Advanced Accreditation:The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. The Association of Academic Physiatrists designates this activity for a maximum of 1.5 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Urinary continence across the life course.

Spina bifida is the most common defect of the central nervous system. It is a congenital malformation of the spine with abnormal neural tube closure occurring between the third and fourth weeks of gestation, and most frequently affecting the lumbar and sacral regions. Most children with spina bifida have a normal urinary tract at birth, although renal damage and renal failure are among the most severe complications of spina bifida. Before ventricular shunting, survival rates for children with spina bifida were low, but most patients can now be expected to live into adulthood, thus prevention of urologic complications and promotion of continence have become critical. This article reviews the literature regarding urinary continence, and discusses issues across the lifespan, and implications for clinical practice and the pediatricians role in the urologic care of children with spina bifida.