Journal of Pediatric Rehabilitation Medicine

Most children with spina bifida have neurogenic bladders. Prior to the use of clean intermittent catheterization (CIC) in 1972, approximately 30% of children with spina bifida died of renal failure. In developing countries where CIC is not done, even more children with spina bifida continue to die from renal failure. This article presents data from Kenya collected from a nurse run comprehensive spina bifida program which evaluates bladder function with leak point pressure (LPP) and begins CIC in those children with LPP >30 cm water. 371 children were seen for surgical closure. Urodynamic studies were done in 249 and of these 167 were started on CIC because of high LPP or need for social continence. 99/371 were lost to follow-up. 72 have died. To date, only 3 deaths were from renal complications. Of 59 children age 5 or older, 45 have achieved social continence. We conclude that a nurse run bladder management program including CIC for children with spina bifida can be done in a developing country with good results on renal function and continence.

The purpose of this article is to review research concerning adolescent development and family functioning among youth with spina bifida myelomeningocele (SBM). Adolescence is a developmental period characterized by substantial changes in biological, psychological, and social functioning, as well as transformation and reorganization within the family system. A biopsychosocial-contextual model of development was utilized to describe the interface between normative adolescent development and the experience of a chronic health condition among youth with SBM. Major empirical findings relevant to family functioning in adolescents with SBM are presented, including the family environment, parenting behaviors, and marital and parental functioning. There is variability with regards to the influence of SBM on the family system and research identifies both disruption and resilience in families. Current research suggests that families of youth with SBM may have higher levels of family stress, difficulties with family roles, lower levels of cohesion, less adaptive parental control and overprotection, and a greater risk for child and parental psychosocial adjustment difficulties. The review concludes with a discussion of the clinical implications of these findings for the care of youth with SBM and directions for future research.

This study identified the baseline participation rates for 101 teens and young adults ages 10–32 years old with a diagnosis of spina or lipomenigocele bifida in various domains: school, employment, community activities, physical activity and peer social relationships. The goal of the study was also to identify barriers to community participation. Our findings demonstrate that overall participation is low in several domains. Community participation is low with only 30% partaking in an organized community activity at least once a week. Multiple individual, family, and environmental barriers were identified by participants and their family. The most frequent barriers identified were low motivation (38%), lack of information (25%) and time constraints (21%). Barriers need to be addressed on an individualized basis as well as addressing the community as a whole. Future plans are to intervene based on the barriers and reassess participation at 6 months and a year with the goal of increased long term participation, employment, quality of life and social relationships.

We review neurobehavioral outcomes and interventions for children with spina bifida. Focusing on children with spina bifida myelomeningocele, we contrast historical views of outcomes based on comparisons across content domains (e.g., language versus visual perceptual skills) with a view based on overarching processes that underlie strengths and weakness within content domains. Thus, we suggest that children with SBM have strengths when the skill involves the capacity to retrieve information from semantic memory and generate material that has been associatively linked or learned (associative processing) and general difficulties on tasks that require the construction or integration of a response (assembled processing). We use a hypothetical case to illustrate the differences in content domains versus general processes and also identify interventions that may be effective in addressing some of the cognitive and behavioral difficulties experienced variably by people with SBM. We extend these general principles to a discussion of variability in outcomes and use data from a large sample of children with spina bifida to illustrate the basis for this variability.

The neurogenic bowel in the person with spina bifida has been difficult to manage. Current literature reveals very little research conducted on the outcome of continence programs in the person with spina bifida. It has different characteristics than the neurogenic bowel seen with spinal cord injury because it occurs during fetal development. Management of the neurogenic bowel to achieve continence is based upon thirteen assessment items that include stool form, individual physiologic parameters, family patterns, diet and medications. Programs are developmentally related to appropriately support the child's involvement. Continence strategies include the use of oral medication early in the day and timed sitting, suppositories or enemas later in the day at a time convenient to the family. The timing of the medications and evacuation is very important to the success.

An interdisciplinary team is important in supporting the family as the child with spina bifida grows into an independent adult. The dietician and occupational therapist have invaluable insight into diet, fluids, adaptive aids and techniques that contribute to positive outcomes of the continence program.

The contributions of primary care providers to the successful care of children with spina bifida cannot be underestimated. Overcoming systemic barriers to their integration into a comprehensive care system is essential. By providing routine and disability specific care through the structure of a Medical Home, they are often the first line resource and support for individuals and their families. The Medical Home model encourages primary care providers to facilitate discussions on topics as varied as education and employment. Knowledge of specific medical issues unique to this population allows the primary care provider to complement the efforts of other specialty clinics and providers in often neglected areas such as sexual health, obesity and latex sensitization. As individuals with spina bifida live into adulthood, and access to traditional multidisciplinary care models evolves, these skills will take on increasing importance within the scope of providing comprehensive and coordinated care.