Health risk behaviors in spina bifida: the need for clinical and policy action
Version of Record online: 3 SEP 2012
© The Author. Developmental Medicine & Child Neurology © 2012 Mac Keith Press
Developmental Medicine & Child Neurology
Volume 54, Issue 11, pages 974–975, November 2012
How to Cite
SAWIN, K. J. and BREI, T. J. (2012), Health risk behaviors in spina bifida: the need for clinical and policy action. Developmental Medicine & Child Neurology, 54: 974–975. doi: 10.1111/j.1469-8749.2012.04415.x
- Issue online: 5 OCT 2012
- Version of Record online: 3 SEP 2012
Health risk behaviors (HRBs) in adults with spina bifida such as poor diet, reduced physical activity, increased television viewing time, and substance abuse often have their genesis in early childhood. They are potentially preventable but if not addressed aggressively may continue to progress across the lifespan. An alarmingly high level of select HRBs in emerging adults are reported from a population-based study by Soe et al.1 These compelling findings highlight the need for a clinical and policy focus on prevention of HRBs, early school and community-based interventions, and transition services for the emerging adult.
Obesity for those with spina bifida adds further challenges in self-management, social activities, and full participation in life. Participants in this study experienced the triad of risks for obesity: a poor diet low in grains, fruits, and vegetables; decreased physical activity; and high television viewing time.1 A healthy diet and physical activity also optimize bowel health. Unfortunately, emerging adults continue to have frequent bowel incontinence, a major deterrent to employment and social life.2 From infancy, all children should be taught to eat a healthy diet. Complicating the issue of diet, children with spina bifida can have texture sensitivities leading to more persistent food avoidance. Children need opportunities to try new food textures without fear of punishment. In addition, individuals with spina bifida and their families would benefit from counseling by health care professionals experienced in feeding issues.
Seeking opportunities to explore the environment in toddlerhood is foundational to later physical activity. Yet mobility impairments may contribute to the challenges of finding developmentally appropriate physical activities. More physically active time is directly related to less television viewing. Families need to be empowered from an early age with the expectation that their children can be physically active and provided with the tools to achieve those expectations. For some families this may take a specific activity plan.
Depressive symptoms are more prevalent for emerging adults with spina bifida than for their peers or for adolescents with spina bifida3 and Soe et al.1 suggest depressive symptoms may be related to the use of alcohol. Yet screening for depressive symptoms in spina bifida is underutilized in clinical practice. From a research perspective, study of depressive symptoms in spina bifida is complicated by the number of instruments with different scoring systems, making it difficult to compare different levels of depressive symptoms. In the future, using measures of depressive symptoms based on item response theory, such as the Patient Reported Outcomes Measurement Information System measures developed by the National Institutes of Health (which have item-weights and thus can be compared across sites or studies), will advance our understanding of depressive symptoms.4 Additionally, it would be important to include not only risk factors but protective factors (such as self-efficacy, hope, attitude, or self-confidence) to fully understand the development of depressive symptoms.
Reduction of HRBs through the lifespan calls for new models of co-management between primary care providers, spina bifida-specific providers, and community partners. It is possible that there is so much for families to learn and do related to spina bifida at young ages that they do not realize that healthy eating and activity are also priorities. As children grow up, families may not be aware of the need to monitor for psychosocial adjustment. Health care professionals should discuss these issues and screen for barriers to achieving healthy behaviors.
There is a great need for policy changes, programs, and support services to optimize the lives of emerging adults with spina bifida. The study by Soe et al.1 and others5 suggest these young adults reach developmental milestones years later than their peers. In addition, the substance abuse risks continue to rise into the third decade of life whereas these behaviors in their peers tapers off.1 This would suggest that most school, adolescent or community-based services are ending just when these adults could more effectively engage in them.2,3 Coordinated health care services with strong community linkages and support services are needed for this population. Individuals, families, and health care professionals can advocate for policy changes at the local and national levels which promote inter-agency collaboration aimed at improving outcomes for emerging adults.
In summary, prioritizing strategies that decrease HRBs and depressive symptoms should be actively addressed in the health care of individuals with spina bifida across the lifespan. If we do not, they, more than the spina bifida itself, may be the major cause of morbidity in young adulthood.