Global burden of chronic non-communicable diseases: Prenatal care and beyond,numerous challenges besiege investigation across the care continuum

Abstract

Recently, the National Institutes of Health (NIH) announced possible restructuring of indirect and administrative costs for funded research. Many entities have raised concern about the impacts that such funding restructuring may have on the future progress of biomedical investigation. The NIH has historically played a key role in research on relevant chronic conditions, including spina bifida and cerebral palsy. Such research funds have not only provided occasion for basic science investigational opportunities but also have allowed for enquiry into clinical, social, and environmental factors that impact disability-specific health outcomes, including those present in some of the world's most vulnerable communities. However, the journal's editorial board is nonetheless encouraged to see the growth and change of Journal of Pediatric Rehabilitation Medicine (JPRM), as the journal evolves from a special issue format to a collections format. The collections will serve as ever-growing “homes” for the latest research on childhood-onset physical disabilities and complex care needs, with the added benefit of greater accessibility and improved user interface. Furthermore, as reflected in this issue, JPRM will continue to offer a platform for research in multidisciplinary care of childhood disability throughout the lifespan as we weather the changes of time together as a committed global community of clinicians and investigators.

Recently, the National Institutes of Health (NIH) announced possible restructuring of indirect and administrative costs for funded research. Many entities have raised concern about the impacts that such funding restructuring may have on the future progress of biomedical investigation. ¹ The NIH has historically played a key role in research on relevant chronic conditions, including spina bifida (SB) and cerebral palsy (CP). Such research funds have not only provided occasion for basic science investigational opportunities but also have allowed for enquiry into clinical, social, and environmental factors that impact disability-specific health outcomes, including those present in some of the world's most vulnerable communities. ² Globally, CP is the most common cause of childhood disability, with a prevalence of 1.5 to 2.5 of 1000 live births. ³ SB occurs in 2.7 to 3.8 of 10,000 live births, with the greatest burden noted in the US among the Latino population. ⁴ With such heavy global burden of disease, it is important that the research community continues to maintain a transnational lens of scope not only on these incidences but also on how these individuals with complex needs fair as they transition through the care continuum.^5,6 While these recent funding changes may seem startling, it is paramount for our global family of researchers to remain united in the goal of weathering the seasons of change, that we have faced many times in the past, in order to continue to improve health outcomes as we care for children, adolescents, and adults with complex care needs throughout their lifespan.

The current issue of the Journal of Pediatric Rehabilitation Medicine (JPRM) continues its mission of highlighting both emerging and leading voices in global pediatric chronic care. From sub-Saharan Africa, Mayaya et al. describe the diagnosis and treatment of over 3000 children with SB treated at the Bugando Medical Center. The authors highlight the need for protocols to treat hydrocephalus with ventricular shunt procedures, and how a medical center in Mwanza, Tanzania can serve as a model for medically complex pediatric patients with SB to other sub-Saharan nations.

Also included in this issue, investigators in the Netherlands described the process of translating the Mini-Eating and Drinking Ability Classifications System from English to Dutch, as well as its applicability in assessing preschoolers with CP. Ultimately, this study found that there was good inter-rater reliability in administering this developmental assessment, which can support improved parent to healthcare professional communication. Eventually tools such as these may be evidenced to improve childhood outcomes in CP across the globe.

A third study in the issue describes both a historical perspective and current update on global practices of myelomeningocele (MMC) neurosurgical closure. Leaders in the field, who met during the most recent Spina Bifida World Congress’ Global Health Symposium, recognized that with the advancement and increasing availability of in-utero MMC repair, there is a need for outcome registries. These authors identified the need to streamline practices across institutions, not only for knowledge capture, but ultimately to reduce care fragmentation and improve coordinated, optimized life-long SB care.

The journal's editorial board is encouraged to see the growth and change of JPRM, as the journal evolves from a special issue format to a collections format. The collections will serve as ever-growing “homes” for the latest research on childhood-onset physical disabilities and the associated life-long complex care needs, with the added benefit of greater accessibility and improved user interface. We are also expectant of changes to “rolling submissions” and “rolling publication” dates across four issues each year, which will allow for faster inclusion of manuscripts into JPRM. Of note, there will be no changes made to the submission or peer review process. Finally, the editors are adding an article type under the heading “State of the Art,” which will provide a new category for authors to comprehensively describe the current level of knowledge and latest advancements in the topics of childhood-onset disability and life-long complex care needs.

While proposed federal funding cuts have brought uncertainty within the scientific community, we must continue our work within our academic institutions and circles of influence, to educate federal, state, and local legislators on the potential impacts of such changes and carry on our own efforts to the best of our abilities. Meanwhile, JPRM remains firmly committed to the pioneers of global disability care and research. As reflected in this issue, JPRM will continue to offer a platform for research in multi-disciplinary care of childhood-onset disability throughout the lifespan as we weather the changes of time together as a committed global community of clinicians and investigators.