Here, we describe our team's approach to fostering an inclusive laboratory culture that executes a study in accordance with funder guidelines and research regulations, as well as provides volunteers with targeted mentorship, skill-development, and leadership opportunities. Our approach is five-pronged: (1) applying the principles of transformational leadership and kaizen, (2) establishing a strong mentor-mentee relationship and fostering community, (3) expanding the role of the research volunteer, (4) identifying volunteer leaders to (a) oversee and work alongside members of existing committees and (b) create new interconnected/interdisciplinary teams, and (5) using technology effectively. Our team is large; at the time of the initial submission we had 104 undergraduate/post-baccalaureate students with no graduate student supervision, and we have since grown to 118 members. Volunteers are diverse and come from 14 countries spanning four continents and numerous intersectional identities. We attribute our rapid expansion and diverse membership to our unique flat organization structure, which allows students from diverse backgrounds to work alongside the PI and contribute to improvements within the team, while fostering their own leadership skills. All volunteers are encouraged to take an active role in the lab, based on their strengths, experiences, and goals, and promote continuous improvement within the organization. Volunteers report feeling valued and have recruited new members from other groups they belong to, creating a self-sustaining system that allows aspiring professionals to learn from and lead their peers.
The majority of the world's population with congenital heart disease (CHD) does not have access to corrective surgery, including 70% of those living in sub-Saharan Africa. Communicable diseases still cause significant mortality in low-and mid-income countries (LMICs), but increasingly, the burden of noncommunicable diseases (NCD), such as CHD and rheumatic heart disease (RHD), has increased, creating great strain on fragile healthcare systems. The number of pediatric cardiac centers in LMICs is grossly inadequate to provide the necessary care. The unprecedented COVID-19 pandemic due to SARS-CoV-2 has only worsened the global disparities, and unfortunately has set the clock back by a few years. There has been an interruption of foreign missions and collaborations, which has affected the care of children with heart disease, and which will further increase the number on the waitlist. Much of the hard-won progress made in improving neonatal, infant, and maternal mortality may be lost due to the pandemic. Time is running out for the ambitious sustainable development goals set for 2030. At present, only 1% of developing world are vaccinated against COVID-19 with the poorest countries not expected to receive vaccine until 2023. This intervening time provides a crucial opportunity to apply "frugal innovation" by training and equipping local teams and policy makers. We employed a Gap and SWOT analysis to identify the steps needed to work towards improving children's heart care in the developing world, all while using lessons learned from the COVID-19 pandemic.
Over 90% of the world's children with congenital heart disease do not have access to cardiac care. Although many models provide pediatric cardiac surgery in low- and middle-income countries, sustainability poses a barrier. We explore one model providing care for the underserved in Chennai, India, that came into existence through trial and error over 30 years across three phases. Phase 1 was a Tamilnadu state government–sponsored program that soon became unsustainable with unmet demands. Phase 2 utilized a grassroots foundation of a public–private partnership (PPP) with few donors and a hospital with suboptimal infrastructure. Phase 3 is the ongoing fine-tuning of the PPP model, with upgraded infrastructure and a well-trained team. Through indigenization, an average cardiac surgery costs Rupees (Rs.) 1,80,000 ($2400). The government funds Rs. 60,000 to 80,000 ($800-$1066.67), and the rest is funded through the fund pool. The goal is to perform 100 free surgeries annually by maintaining a fund pool of Rs. 50 lakhs ($66,666.67), which supplements government funds. This ensures equitable distribution of funds with no compromise on resources (disposables, single-use cannulas, etc). Our model ensures the dignity of the patient, fair compensation for workers, and is practical, affordable, and easily adaptable. Thus far, this model provided free cardiac surgery for 357 children from Risk Adjusted Congenital Heart Surgery Score of 1 to 4, with an overall mortality of 2.73%. The prerequisites for this model are having a “spark plug,” a dedicated surgical team, a partnership with state-of-the-art infrastructure, and a steady flow of funds.
Introduction Obstructive sleep apnea (OSA) is frequently seen in people with cystic fibrosis (PwCF). The presence of upper airway pathology including adenotonsillar hypertrophy and chronic sinusitis is a known risk factor for OSA in PwCF. The widespread use of highly effective modulator therapy (HEMT) such as elexacaftor/tezacaftor/ivacaftor has led to improvements in nutritional status, lung function, and sinus disease among PwCF. However, the impact of HEMT on OSA is still unknown. Methods We conducted a single center retrospective review of polysomnographic data in PwCF between 1/1/2009-10/31/2022. Results Fifty-three children with CF had undergone diagnostic polysomnography during the study period. Twenty-eight (53%) patients had OSA. Frequency of OSA did not differ by race or mutation type (p>0.5). Eighteen (34%) patients were on HEMT at the time of polysomnography. Mean ages of PwCF in the post-HEMT vs pre-HEMT were 11.6±5.4(sd) vs 6.4±3.5 years respectively, p=0.001. Mean body mass index percentile was 70.8±27.4 vs 55.8±31.2 respectively, p=0.09. Mean forced expiratory volume in 1 second as a percent predicted was 97.1±22.5 vs 87.0±20.9 respectively, p=0.2. Frequency of OSA was 67% in the post-HEMT group and 46% in the pre-HEMT group (p=0.1). Snoring was present in 91% of PwCF in the pre-HEMT group and 78% of those in the post-HEMT group (p=0.2). Frequency of mouth breathing was 77% and 56% in the pre-HEMT and post-HEMT groups respectively (p=0.1). Large adenoids were present in 37% of PwCF in the pre-HEMT group as compared to 11% of those in the post-HEMT group (p=0.046). Frequency of large tonsils in the pre-HEMT and post-HEMT groups was 43% vs. 28% (p=0.3). There were no differences in frequency of chronic sinusitis between the groups (p=0.7). Conclusion Frequency of OSA among PwCF continues to be high even in the post-HEMT era. PwCF on HEMT showed a trend towards more frequent OSA despite having less upper airway pathology. The better nutritional status afforded by HEMT could be contributing to the high frequency of OSA in this population. Larger studies are needed to formally test this hypothesis. Support (if any)
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.