A special issue of the Journal of Pediatric Rehabilitation Medicine (JPRM) provides 20 evidence- and consensus-based updates to key sections of the 2018 “Guidelines for the Care of People with Spina Bifida” issued by the Spina Bifida Association (SBA).

These guidelines reflect current recommendations for the care of patients with Spina Bifida (SB) across the entire lifespan, from prenatal counseling to adult care, according to a media release from IOS Press.

As a result of research advancements and improved team-based patient care, approximately 80%-90% of children with SB now live to adulthood in the United States. The Guidelines were written with this idea in mind and present the best evidence for what care should be delivered, regardless of the model or types of practitioners available.

“Medical evidence and clinical practice continue to change, and so it was time to update the most recent set of Guidelines to provide the best, most up-to-date recommendations, focusing not only on pediatric care, but also on safely transitioning young adults with SB from pediatric to adult healthcare services. Guidelines needed to be included and/or revised to reflect the needs of adults with SB. The goal was to provide a more holistic approach to care. It is not just a condition that affects health but affects all of life.”

— co-Guest Editors Jonathan Castillo, MD, MPH, and Heidi A. Castillo, MD, both from Developmental Pediatrics, Department of Pediatrics, Meyer Center, Texas Children’s Hospital/Baylor College of Medicine, Houston

“Pediatric and adult providers need to embrace the fact that adult providers will be needed and are important to the lives of people with SB.”

— Judy Thibadeau, RN, MN, Director of Research and Services, Spina Bifida Association, Arlington, Va

Updated and Expanded Guidelines Topics

The updated and expanded sections of the Guidelines presented in this issue move beyond more traditional issues of neurosurgical, urologic and orthopedic care, emphasize the continuum of care, health, well-being and quality of life, and include more background information about key topics and why they are important in the care of individuals with SB. They cover:

  • Bowel function and care
  • Central precocious puberty
  • Coordination of care
  • Family functioning in families with a child with Spina Bifida
  • Health promotion and preventive healthcare service guidelines
  • Latex allergy
  • Mental health
  • Mobility
  • Neuropsychological care
  • Neurosurgical guidelines
  • Nutrition, metabolic syndrome, and obesity
  • Orthopedic guidelines
  • Prenatal counseling
  • Quality of life
  • Self-management and independence
  • Sexual health and education
  • Short stature and the effect of human growth hormone
  • Skin-related issues
  • Urologic guidelines
  • Women’s health

“These Guidelines stress other issues that are important to successfully transition to adulthood including (but not limited to) family functioning, mental health, women’s and men’s health, and self-management skills in the broader societal and participation context. These Guidelines acknowledge that one can have good medical health and still struggle in terms of independence and across the lifespan. So, they are not just about medical care across the lifespan, but ‘life care.'”

— co-Guest Editor and SBA Medical Director Timothy John Brei, MD, Division of Developmental Medicine, Department of Pediatrics, Seattle Children’s Hospital and the University of Washington School of Medicine, Seattle

“Neural tube defects like SB have widespread global significance. Some countries manage the care of patients with SB better than others, particularly when it relates to the care of adults with SB. Therefore, global accessibility to the Guidelines and their updates is vital, as healthcare professionals embedded in local communities will seek to use this guidance to provide high-quality care with a view towards reducing healthcare disparities. Language differences, immigration, cultural beliefs, acculturation, local resources, and social determinants of health must be taken into account when Guidelines are implemented throughout the world.”

— Dr. Jonathan Castillo

SBA’s Collaborative Care Network, through a cooperative agreement with the National Center on Birth Defects and Developmental Disabilities (NCBDDD), part of the Centers for Disease Control and Prevention (CDC), supported the production of the “Guidelines for the Care of People with Spina Bifida.”

These Guidelines were the culmination of three years of planning and work involving over 100 international experts using evidence-based research and consensus methodologies. The text of the Guidelines is openly available on the SBA website and the position papers in this special issue have been published as open access through the support of the SBA, the release continues.

“It is the hope of SBA that these and future Guidelines will promote and standardize best practice regardless of the characteristics of individuals with SB or where their care is received. It is through providing better care that we will ultimately achieve a better future for all those living with SB.”

— Brad E. Dicianno, Associate Medical Director, SBA, and Director, UPMC Adult Spina Bifida Clinic, Pittsburgh

[Source(s): IOS Press, EurekAlert]

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