Guidelines and scientifically-based spina bifida care: Guidance across the lifespan in a global health context

Abstract

The COVID-19 pandemic has reminded us that, if of nothing else, we live in a globalized community. Enthusiasm for evidenced-based medical knowledge is also contagious. Just as the incidence of SARS-CoV-2, the associated coronavirus, has had a borderless impact on global public health, so too neural tube defects have widespread significance. Previously, the concept of “blue marble health” was introduced as a policy framework to illustrate trends in the geographic distribution of health disparities affecting at-risk populations that live, not only in low-income countries, but also in pockets of the populace in wealthier nations. Subsequently, the Spina Bifida Association’s Collaborative Care Network, through a cooperative agreement with the Centers for Disease Control and Prevention, recently produced the “Guidelines for the Care of People with Spina Bifida.” While language differences, immigration, cultural beliefs, acculturation, local resources and social determinants of health, must be taken into account when these guidelines are implemented across the globe, they could not come at a more suitable time. The current digital age, as well as open access to this special issue, will ensure their ongoing wide distribution.

The COVID-19 pandemic has reminded us that, if of nothing else, we live in a globalized community. Enthusiasm for medical knowledge, in as much as it can be easily shared across borders, is also contagious. Just as the incidence of SARS-CoV-2, the associated coronavirus, has had a borderless impact on global public health, so too neural tube defects (NTDs) have widespread significance [1]. Globally, nearly 300,000 babies are born with NTDs each year [2]. Broadly shared scientific guidance regarding the folic acid fortification of staple foods has made a positive impact on global NTD prevalence, albeit with divergent implementation rates among many countries [3]. These international gains are due to clinical recommendations for folic acid fortification made widely available, as well as to the education and advocacy of professionals around the world who leveraged medical knowledge to craft policies to benefit broad sectors of their countries’ population [4]. Just as the global medical community has rallied around national fortification efforts, in the midst of this borderless pandemic there is also reason for optimism for gains in the transmission of medical knowledge. Increasingly, our digital age is bringing together healthcare providers and investigators to share what they are learning with colleagues around the world.

An example of this spirit is embodied in the development and dissemination of the new clinical care guidelines for people living with spina bifida. The Spina Bifida Association’s (SBA) Collaborative Care Network, through a cooperative agreement with the National Center on Birth Defects and Developmental Disabilities (NCBDDD) in the Centers for Disease Control and Prevention (CDC), recently updated the care guidelines. To accomplish this, the SBA convened international, multidisciplinary teams of clinical and research experts as working groups [5]. Utilizing the International Classification of Functioning, Disability and Health (ICF) model as a framework, a systematic review of multiple databases was completed as the foundation towards consensus building [7]. This approach led to production of the fourth edition of the “Guidelines for the Care of People with Spina Bifida.” This effort, involving over 100 international experts, employed evidenced based-research and consensus methodologies to produce a comprehensive set of guidelines covering topics from prenatal counseling to transitions and aging [5]. These guidelines know no borders and can be used for care in a broad array of locations across the globe.

The concept of “blue marble health” was introduced in 2013 as a policy framework to illustrate trends in the geographic distribution of neglected tropical diseases affecting at-risk populations that live not only in low-income countries but also in pockets of the populace in wealthier nations [8]. It is a new global health paradigm that challenges a traditional approach that simply juxtaposed health outcomes in low-income versus high-income countries. “Blue marble health” explains the varied prevalence and related needs of SB care among developed economies such as many in North America and Europe [9]. Despite the fact that fortification recommendations athwart the globe, recalcitrant rates of new folic acid preventable NTD cases remain high in many nations [3]. Additionally, even among those with robust services for children, many countries struggle to provide adequate services for adults with SB. This challenge is magnified in low-income countries and among immigrant or minority populations in wealthier nations. Therefore, global accessibility to the guidelines is vital, as healthcare professionals embedded in local communities will seek to use this guidance to provide high-quality care.

In our “blue marble world,” the number of immigrants and refugees is escalating. Immigration is a social determinant of health that can significantly affect care provision [10]. Additionally language differences, cultural beliefs, acculturation, as well as local professional norms and institutional resource constraints, must be taken into account when these guidelines are implemented across the planet [11, 12]. These guidelines could not come at a more suitable time, for when numerous populations need updated recommendations, the digital age and this open access special issue will ensure their wide distribution.

The recent update to the “Guidelines for the Care of People with Spina Bifida” thrust scientifically-based SB care into this new era of dynamic and international collaboration among a worldwide community of clinicians and investigators. Of this global community, 23 countries were represented by those who participated in the Third World Congress of Spina Bifida Research and Care. Since that time, the Journal of Pediatric Rehabilitation Medicine has emerged as a global platform for the publication and dissemination of SB-related research. As we await the next World Congress of Spina Bifida Research and Care, this fifth SB-related special issue provides an open access collection of key guidelines and a number of innovative SB associated studies. It can be trusted that the guidelines and the accompanying original research published in JPRM will continue to serve as a catalyst for culturally-competent recommendations, as well as thoughtful investigation in order to improve the care among the diverse and aging communities of individuals affected with SB around the globe.

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