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Pediatricians know that coordination and advocacy work. What happens, however, when we are faced with complex cases in conditions that are nontraditional and prohibitively difficult?
Pediatricians know that coordination and advocacy work. What happens, however, when we are faced with complex cases in conditions that are nontraditional and prohibitively difficult? We all have faced these situations in practice in the United States. For our team, the problem came into sharper focus while working overseas.
The American Academy of Pediatrics’ policy statement on the medical home states that “medical care of infants, children, and adolescents ideally should be accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective.”1
We pediatricians strive to make this vision a reality for our patients in whatever environment we find ourselves practicing. Sometimes this involves case management in well-established clinics in tertiary care facilities. Sometimes it involves using a medical home model within a community-based practice. Sometimes, however, it calls for us to create a significantly different model. Although we must adjust our approach, the basic principles of coordinated, family-centered care remain constant.
What really makes a difference for medically fragile children in complex, resource-limited environments? This is the question that faces our team daily as we work in the sprawling, informal invasion settlements continually springing up in the South American metropolis of Lima, Peru. We frequently find children living in extreme poverty with complicated disease courses (cerebral palsy, congenital heart disease, sequelae from injury) who are receiving substandard care. This is not only disastrous for them, but it also presents an economic and personal catastrophe for their families.
What puzzled us most when we started working in these economically impoverished areas was the fact that reasonable-quality, appropriate care was often available at low or no cost within the government system, within just a few kilometers of where the children we aimed to serve were living. We found ourselves asking, “Where is the breakdown? What can we do?” Duplication of services and resources was not the answer. This would neither improve efficiency nor enhance coordination with the local system. Reproduction of services was simply an unsustainable solution.
We realized that an unfortunate combination of poor (or no) care coordination, logistical barriers such as transportation, and lack of family education was creating an unhealthy synergy. This, in turn, was excluding some patients with complex illness from badly needed, government-subsidized care. Because of the lack of a few pieces of the puzzle, these patients were losing out on the whole package of meaningful care. Whether it was the child with cerebral palsy who could not access her tuberculosis care because of a lack of appropriate transportation, or a child with complex congenital heart disease who was not receiving care because of a lack of maternal job security, these kids were missing out. In almost every case, the missing pieces cost a fraction of the children’s overall state-subsidized care. Families lacking the small resources that would allow them to coordinate transportation, procure supplies, or gain support were missing out on many of the free services the state had to offer.
The fact that children with complicated illness have increased care utilization is well established in the literature.2 What is lacking are well-defined models that can be applied in complex, resource-limited environments to better coordinate care for vulnerable children. The medical home model in North America has shown promise in improving overall care of medically complex children.3 The nurse case management model also has been shown to be effective in improving care and reducing costs.4 Community health promoter models have been used to improve the health of communities in a variety of ways and in both urban and rural settings.5,6 Few of these models, however, have been tested in environments with such complex need and limited resources.
In response to what we saw as a tragic and frustrating problem, we combined the medical home, the nurse case management, and the community health promoter approaches into a combined care-delivery model that we call the Seguimiento Y Coordinación Inter-profesional para Niños con Casos Complejos (SYNC) Project. We created a team-based model comprised of health "ambassadors," a social worker, and a supervising nurse care coordinator.
Our health ambassadors are members of the local communities, well versed in microculture, available resources, and the varied logistical challenges of the individual communities across the city. They are the backbone of the SYNC project, providing consistent interaction with the medically fragile patients and their families. A social worker helps with legal and system-level issues. The driving engine of the project is the nurse care coordinator. She provides targeted education, advocacy, and guidance for each patient and family. With her broad system knowledge and cultural competence, the nurse coordinator is able to target and fill the specific gaps in care delivery.
Using this team-based approach, along with limited resource interventions (eg, transportation costs, support for needed testing, and more), we keep children moving through the system who otherwise would fall through the cracks. This model not only saves the patients and families heartache and significant financial impact, but also likely saves the overall health system valuable economic resources.
Our success with this model demonstrates the importance of working with existing systems and structures to augment the scope and effectiveness of care. We do not seek to replace services, only to bridge gaps. Formative evaluation of the model is currently under way. We are measuring 8 separate indicators for each patient and seeking to develop a holistic understanding of the impact of the SYNC project.
Pediatricians working in resource-limited settings inside or outside the United States have a unique opportunity to identify children who would benefit from similar coordination and advocacy. What works for our complex, resource-limited environment in Peru can work in similar environments in the United States and abroad.
By thinking outside the normal paradigm of medical or surgical interventions, we can utilize coordination as perhaps a better use of energy and money for real, substantive change in health outcomes for the most fragile children.
1. Medical Home Initiatives for Children With Special Needs Project Advisory Committee. American Academy of Pediatrics. The medical home. Pediatrics. 2002;110(1 pt 1):184-186.
2. Buescher PA, Whitmire JT, Brunssen S, Kluttz-Hile CE. Children who are medically fragile in North Carolina: using Medicaid data to estimate prevalence and medical care costs in 2004. Matern Child Health J. 2006;10(5):461-466.
3. Cohen E, Friedman JN, Mahant S, Adams S, Jovcevska V, Rosenbaum P. The impact of a complex care clinic in a children's hospital. Child Care Health Dev. 2010;36(4):574-582.
4. Gordon JB, Colby HH, Bartelt T, Jablonski D, Krauthoefer ML, Havens P. A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs. Arch Pediatr Adolesc Med. 2007;161(10):937-944.
5. Zandee GL, Bossenbroek D, Slager D, Gordon B. Teams of community health workers and nursing students effect health promotion of underserved urban neighborhoods. Public Health Nurs. 2013;30(5):439-447.
6. Khanal S, Sharma J, GC VS, et al. Community health workers can identify and manage possible infections in neonates and young infants: MINI--a model from Nepal. J Health Popul Nutr. 2011;29(3):255-264.
Dr Cooper is director of medical projects, Anglican Church of Peru, Lima. Dr Centrone is executive director, Health Bridges International, Portland, Oregon, and vice president of research and design laboratory, Center for Social Innovation, Boston, Massachusetts. The authors have nothing to disclose in regard to affiliations with or financial interests in any organizations that may have an interest in any part of this article.
TO LEARN MORE ABOUT THE SYNC PROJECT and the Anglican Church of Peru’s medical mission, visit www.peru.anglican.org/harvestMedical.html, or send e-mail to Dr. Cooper at email@example.com. For information about Health Bridges International, visit http://hbint.org/ or contact Dr. Centrone at firstname.lastname@example.org.