Globally, nearly 300,000 babies are born with neural tube defects including spina bifida (SB) each year. This special issue of the Journal of Pediatric Rehabilitation Medicine (JPRM) provides 20 important updates based on evidence and consensus to key sections of the “Guidelines for the Care of People with Spina Bifida” 2018 issued by the Spina Bifida Association (SBA). These reflect current recommendations for the care of patients with SB over the entire lifecycle, from antenatal counseling to adult care.
As a result of advances in improved team-based patient care and care, approximately 80% -90% of children with SB are now living into 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 users available.
“Medical evidence and clinical practice are still changing, so it was time to update a set of up-to-date Guidelines to provide the best, most up-to-date recommendations, focusing not just on pediatric care. , but also safely moved young adults. with SB from pediatric services to adult health care services, ”explained co-editors Jonathan Castillo, MD, MPH, and Heidi A. Castillo, MD, both from Developmental Pediatrics, Department of Pediatrics, Meyer Center, Children’s Hospital Texas / Baylor College of Medicine, Houston, TX. “Guidance needed to be introduced and / or revised to reflect the needs of adults with SB. The aim was to provide a more holistic approach to care. It’s not just a condition that affects health but affects life. “
Judy Thibadeau, RN, MN, Director of Research and Services, Spina Bifida Association, Arlington, VA, said, “Pediatric and adult providers must accept the need for adult and important providers for the lives of people with SB.”
The updated and expanded sections of the Guide presented in this issue go beyond the more traditional aspects of neurosurgical, urologic and orthopedic care, emphasizing continuity of care, health, wellbeing and quality of life. , and includes more background information on key topics and why they are important in the care of individuals with SB. They cover:
- Role and bowel care
- Puberty advanced in the middle
- Coordination of care
- Family activity in families with a child with SB
- Health promotion management and preventive health care service
- Latex allergy
- Mental health
- Movement
- Neuropsychological care
- Neurosurgical management
- Nutrition, metabolic syndrome, and obesity
- Orthopedic instruction
- Childbirth counseling
- Quality of life
- Autonomy and independence
- Health and sexuality education
- Brief profile and effect of human growth hormone
- Skin issues
- Urologic guidance
- Women’s health
“This Guidance highlights other issues that are important for the successful transition to adulthood including (but not limited to) family activity, mental health, women’s and men’s health, and self-esteem skills. guidance in the wider social and participation context, “noted co-guest. SBA Editor and Medical Director Timothy John Brei, MD, Department of Developmental Medicine, Department of Pediatrics, Seattle Children’s Hospital and University School of Medicine Washington, Seattle, WA. ”This Guide acknowledges that a person can have good medical health and still struggle for independence and over a lifetime. So, they are not just about lifelong medical care, but ‘lifelong care’. ‘”
In addition, neural tube defects such as SB have a broad global significance. Some countries manage the care of patients with SB better than others, especially when it comes to the care of adults with SB. Global access to the Guidelines and their updates is therefore essential, as health care professionals rooted in local communities will seek to use this guidance to deliver high quality care in the face of inequalities in care. reduce health. Language differences, immigration, cultural beliefs, recruitment, local resources and health social indicators must be taken into account when implementing this Directive worldwide.
The SBA Collaborative Care Network, through a collaborative agreement with the National Center on Birth Disorders and Developmental Disorders (NCBDDD), part of the Centers for Disease Control and Prevention (CDC), supported the release of the “Guidelines for the Care of People with Spina Bifida.” This Guide was the result of three years of planning and work in which more than 100 international experts used evidence-based and consensus-based research methods. . The text of the Guidance is openly available on the SBA website and the position papers in this special issue have been made publicly available through SBA support.
“It is the hope of the SBA that this and future Guidelines will promote and standardize good practice regardless of the characteristics of people with SB or where their care is found. It is through providing better care that we will ultimately achieve a better future for them. living with SB, “he told Brad E. Dicianno, Associate Medical Director, SBA, and Director, UPMC Adult Spina Bifida Clinic, Pittsburgh, PA.
“This open access Guidance is very important in educating people with SB and their medical providers,” said Senior Managing Editor JPRM Elaine L. Pico, MD, UCSF Benioff Children’s Hospital Oakland, CA. “With better health and the worldwide distribution of this Guide we are looking at a strong aging population of those with SB that experienced medical providers need to cater for.”
“We are so grateful to the magazine for its continued focus on SB. In fact, it is a gift to our community, and we are grateful and excited to be a part of what has happened so far. We can’t wait to see where this takes us all, ”said Sara Struwe, MPA, President & President, Spina Bifida Association, Arlington, VA. “From our community to your own community, thank you!”