Improving the Care of People With Spina Bifida – Comprehensive Guidelines Promote Health and Quality of Life Across the Lifespan

In 2018, a multi-year international initiative produced and published updated comprehensive Guidelines for the Care of People with Spina Bifida. Published through the Spina Bifida Association, the guidelines brought up to date the best practices of care for people with Spina Bifida (SB) across the lifespan and healthspan of the individual. That international effort was the product of more than 100 multidisciplinary experts. The 2018 edition of the Guidelines is the fourth edition in its evolution. The work provides critical insights for health care providers to optimize multidisciplinary care along the bio-psycho-social spectrum for these complex cases.

Brad Dicianno, MD, associate professor and director of the UPMC Adult Spina Bifida Clinic, and Amy Houtrow, MD, PhD, MPH, chief of Pediatric Rehabilitation Medicine at UPMC Children’s Hospital of Pittsburgh and director of the Pediatric Spina Bifida Clinic at UPMC Children’s Hospital of Pittsburgh, were a part of those international efforts to update and promote care guidelines for people with Spina Bifida. Additionally, Dr. Dicianno serves as the Guideline Steering Committee Co-Chair, and associate medical director of the Spina Bifida Association (SBA) and chair of the SBA’s Professional Advisory Council.

Special Edition of the Journal of Pediatric Physical Medicine and Rehabilitation

In December 2020, the Journal of Pediatric Physical Medicine and Rehabilitation published a special thematic issue focusing on key sections and aspects of the 2018 Guidelines for the Care of People with Spina Bifida. The guidelines and sections featured in the publication were updated with new information and expanded to include broader context on their clinical importance to patient health and quality of life. Both Drs. Dicianno and Houtrow played instrumental roles in the development of the journal edition. 

Dr. Dicianno co-authored the journal's preface¹ to the edition, highlighting the importance of the SB Guidelines to the health and quality of life of people with SB, and the updates and expansions of the key Guidelines discussed in the edition. As the authors indicate, the care of people with SB is not a task for a singular provider or practice, but rather, "Optimal care is best achieved as a partnership among people with SB, and their families, health care providers, and specialists along with larger health systems and community-based organizations.” The care of people with SB must be nuanced and delivered in a “team approach.”

Dr. Houtrow co-authored two articles^2,3 in the special edition of the Journal. The first article explores the SB Quality of Life Healthcare Guidelines developed as part of the 2018 initiative. These evidence-based guidelines address the factors that promote or negatively affect quality of life for people living with SB. The Guidelines and article also address gaps in the evidence base for both clinical care and research priorities.

The second article, "Sexual Health and Education Guidelines for the Care of People With Spina Bifida," outlines the rationale behind the guidelines developed in 2018, their importance in the spectrum of health care and quality of life, and what gaps exist in educational efforts for both patients and their providers.

Journal Edition References

1. Dicianno BE, Dosa N, Beierwaltes P. Preface to the Special Issue for the Guidelines for People With Spina Bifida. J Pediatr Rehabil Med. 2020; 13(4): 457-459. Editorial.

2. Sawin KJ, Brei TJ, Houtrow AJ. Quality of Life: Guidelines for the Care of People With Spina Bifida. J Pediatr Rehabil Med. 2020; 13(4): 565-582.

3. Houtrow AJ, Roland M. Sexual Health and Education Guidelines for the Care of People With Spina Bifida. J Pediatr Rehabil Med. 2020; 13(4): 611-619.

UPMC SB Clinics Receive National Recognition

The Spina Bifida Clinics at UPMC Children’s and the UPMC Adult Spina Bifida Clinic are partners and close collaborators providing a continuum of care as pediatric patients transition to adult care. The UPMC Adult Spina Bifida Clinic is the only one of its kind in western Pennsylvania. Both clinics recently received national recognition as Spina Bifida Clinic Care Partners from the Spina Bifida Association for their combined work and efforts meeting all 10 of the SBA’s criteria for the designation.

More About Dr. Dicianno

Brad Dicianno, MD, is an associate professor and Vice Chair for Research in the Department of Physical Medicine and Rehabilitation. He is the medical director of the UPMC Center for Assistive Technology, director of the UPMC Adult Spina Bifida Clinic, medical director and chief operating officer of the Human Engineering Research Laboratories, and medical director of the VA Center of Excellence on Wheelchairs and Assistive Robotics Engineering. His clinical interests are in the areas of spina bifida and assistive technology. His research interests focus on developing and studying interventions targeted to improving health and wellness in individuals with complex disabilities, such as wheelchairs, mobile health, and preventative care programs. 

More About Dr. Houtrow

Amy Houtrow, MD, PhD, MPH, is a professor and Vice Chair in the Department of Physical Medicine and Rehabilitation for Pediatric Rehabilitation Medicine at the University of Pittsburgh School of Medicine. She is also the vice-chair for Quality and Outcomes. She directs the ACGME accredited Pediatric Rehabilitation Medicine Fellowship and is the chief of Pediatric Rehabilitation Medicine Services at the UPMC Children's Hospital of Pittsburgh and the medical director of the Rehabilitation Institute at UPMC Children's.