Children with SCI need specialized care throughout their childhood and teenage years. However, because spinal cord injuries are relatively rare, few pediatricians have experience in the care that children need.
Spinal Cord Injury in the Child and Young Adult covers the vast territory of pediatric SCI treatment in one place. According to Dr. Vogel, chief of pediatrics and assistant chief of staff at Shriners Hospitals for Children — Chicago, and a professor in the department of pediatrics at Rush Medical College, children with pediatric-onset SCI face health system gaps, especially in the transition from pediatric to adult care and the conversion from parent-controlled health care to self-management.
The book is intended for clinicians of all disciplines who may only occasionally care for youth with SCI. But it’s also helpful to those who specialize in SCI as well as clinical and basic researchers in the SCI field. Topics include; new developments in pediatric SCI research, current standards for optimal care, areas lacking scientific evidence, and recommendations for clinical practice and future research.
We interviewed Dr. Vogel about his book:
Q: What are some of the new developments in pediatric SCI research?
Dr. Vogel: We are studying the psychosocial development of kids with SCI throughout their lifespan including their outcomes as adults, plus looking at their caregivers and the mutual impact that caregivers and kids with SCI have on one another.
We are [also] working on ways to evaluate outcomes (such as activity, participation, neurological and functional status) that are appropriate for children of different ages, and that hopefully can be used to track their progress throughout their lifespan.
In respect to mobility, both power and manual wheelchairs appropriate for children as young as one year are becoming available. It is critical we assure that kids of all ages have the means to be mobile in their community so that they may fully participate in society.
Q: What are some of the more difficult, or unknown factors children with SCI face as they transition to adulthood?
Adolescents with SCI face the same challenges of becoming an adult as all youth. But those challenges are modified as a result of their SCI. For example, despite the fact that adults with pediatric-onset SCI are better educated than the general population, they are significantly underemployed. Mobility issues impact their ability to participate fully in their communities as a result of architectural barriers and lack of available transportation (both private and public). Socialization (including dating, marriage, having children and sexuality) is a major obstacle and impacts their quality of life.
It is important throughout the lifespan of a child with SCI that “expectations” that they have an active, productive and satisfying life are emphasized by their parents, healthcare providers, school teachers and society in general. This is particularly critical during adolescence as they begin to transition into adulthood. These expectations need to be ingrained in the lives of our youths with SCI.
Q: What do medical team members need to understand about treating children with SCI?
Dr. Vogel: Children and adolescents are not small adults. As they progress from infants to toddlers to school- aged kids and adolescents, they experience incredible changes in all aspects of their lives (physical, physiological, psychosocial, cognitive). Care must be responsive to these changes as they progress through each phase.
Children with SCI experience unique complications compared to adults with SCI (such as scoliosis) plus younger children may not be able to articulate symptoms such as a headache, which accompanies life-threatening episodes of autonomic dysreflexia.
Medical Reviewer, Eugen Boltshauser of the Department of Pediatric Neurology, University Children’s Hospital, Zurich, Switzerland says the book “is an easy read and inspiring. The chapters are well–structured, with subtitles, they usually start with a case vignette introducing the topic, and they end with a concise summary. Numerous tables, schematic diagrams, and score sheets facilitate the overview… This book will prove to be a useful resource and is recommended to all those who are involved in the comprehensive care of children and young adults with spinal cord injury.”