BY: SUE JOHNSON, RN
The burden of asthma is explained this way:
"It is like breathing through a squished straw."
"It feels like someone is hugging me and squeezing the air out of my body."
"My lungs feel tight but also ready to burst."
Those descriptions are all from school-aged children and shed light on the reality of life living with asthma. Childhood asthma has developed into a major public health concern. Among children ages 5 to 14, the disease prevalence increased 74% between 1980 and 1994, according to the Centers for Disease Control and Prevention. Asthma affected 26 million Americans and nearly 340 million people worldwide in 2016, according to the Global Burden of Disease study. Asthma can profoundly affect quality of life. And as we have learned at CHRISTUS St. Michael Health System in Texarkana, asthma is not just a health issue for children — it can also take a toll on education. Respiratory issues are among the leading causes of absenteeism among students in this part of the country and others. As its name might suggest, Texarkana is located on the border between Texas and Arkansas, and is just a few hours east of Dallas, where communities also share our challenges associated with pediatric asthma.
In San Antonio, you will find the same sorts of challenges at the only freestanding children's hospital in the Alamo City, The Children's Hospital of San Antonio. It is here that CHRISTUS Health operates an asthma and allergies program to help children and their families take control of their breathing, helping thousands of children in a city known for its environmental triggers for people with asthma. San Antonio averages nearly 30 days of ozone action days a year, according to the Alamo Area Council of Governments. Local TV weather forecasters regularly highlight air quality alert days on their morning shows, letting commuters and the community know when to expect poor air quality.
There is currently much public policy debate regarding air quality and disagreement from some state lawmakers on a recent decision by the U.S. Environmental Protection Agency to deem Bexar County, in which San Antonio is located, as non-compliant with federal ozone standards. Although we know of no local data that connects the air quality with the daily exacerbations of asthma among schoolchildren, it is certainly a contributing factor. In asthma, something — air pollution, allergens, exercise, stress, certain chemicals — causes the airways of the lungs to narrow or become blocked, making it hard to breathe. No matter the day, however, there is plenty of pollen in South Texas where "Cedar Fever" is a known chronic ailment among allergy and asthmatic sufferers.
Steamy afternoons in the summer and mountain cedar in the winter offer little to no relief to asthma sufferers. In addition, home environments include plenty of irritants from dust mites, cigarette smoke, pet dander and mold. Kelley Smith, MD, a pediatric pulmonologist at The Children's Hospital of San Antonio, recalls one case in which mold was to blame for a young child's severe asthma attacks. A mother and her three children, including her middle son with asthma, lived in an apartment. That apartment recently had been damaged by water, leading to a mold-infested environment. The landlord was unwilling to let the family out of its lease. The mold was exacerbating asthma problems for the middle son, such as severe shortness of breath, coughing and wheezing, leading to some hospitalizations for the child. It required some work, but Smith and his staff pushed the issue to get the child into a safer environment. Case management and a comprehensive team of caregivers jumped into action. Caseworkers communicated closely with the landlord, advising the landlord of the possible liability of renting an apartment with mold to such a sick child. The result: the family was released from the lease without penalty and the family was able to move.
Smith still sees the child occasionally and reports their work didn't just open up a child's airways, but opened up a way to a healthier home environment for the family and a chance for a young boy to play soccer and live life more fully. Smith spends a great deal of time helping families and children understand what an asthma diagnosis entails. Asthma, he explains, is more complicated to manage than other afflictions — you have to use the right inhalers at the right time with the right technique. In addition, asthma involves strategies of prevention. He explains to families that you do not brush your teeth only when you get a toothache. It requires daily attentiveness. If asthma is not managed correctly, it can become a struggle to breathe and sends many parents and their children to the emergency room.
As a health care leader in the ministries we serve, CHRISTUS Health does not let the burden of asthma fall on a family or an individual alone. At The Children's Hospital of San Antonio, associates have put together a team approach to take care of patients suffering from asthma. From the emergency department to various units within the hospital, further education is offered — including a tangible asthma action plan that families can carry with them when they leave. The plan is geared toward patients and their caregivers, and covers ways to manage life with the illness, what to do every day as you live with asthma, when to call for help and when to come to the emergency room. The goal is to get everyone who is involved with the child's care on the same page.
However, truly working toward a solution meant going outside our emergency departments and hospital walls and out into the communities we serve. For the last several years, a Delivery System Reform Incentive Payment (DSRIP) funded program through a Medicaid waiver has enabled us to operate a CHRISTUS St. Michael Mobile Pediatric Asthma Program in Texarkana. (In 2011, Texas received federal approval for a waiver allowing the Centers for Medicare & Medicaid Services and states more flexibility in designing programs to ensure delivery of Medicaid services.)
GIVING KIDS AIR TO SOAR
In the fighting spirit of St. Michael the Archangel, the Spirit of St. Michael fights asthma today in Texarkana. The Spirit of St. Michael is what we call our mobile asthma program that has helped more than 3,000 children since it began in 2014. The program includes a mobile outreach vehicle, equipped with intake and treatment stations and a private examination area.
Young people like 11-year-old Abbey Fricks were among the first we helped. Abbey's mother noticed her child's irregular breathing after being active for just a short period. Although Abbey often seemed to have issues with her sinuses and allergies, her mom shared that Abbey's breathing just did not sound like it should. About the time the family's concerns started to mount, young Abbey brought a flyer home from school regarding the Spirit of St Michael's CHRISTUS St. Michael Mobile Pediatric Asthma Program. The Spirit of St. Michael mobile unit was going to be at her school, and the screening was free. Her parents agreed it would be a good opportunity to have her screened.
In fact, it proved to be a life changer. Abbey and her parents worked closely with the nurses on board the unit. They performed a number of screenings. At a follow-up appointment, a nurse practitioner informed the family Abbey did indeed have asthma. The nurse practitioner then provided the family with education and answered their questions. Mom and dad report that Abbey now manages her asthma very well. She knows what triggers her attacks and knows when she needs treatments.
The Spirit of St. Michael is an important service that removes barriers for children and their families who may be unable to travel or pay for preventive asthma care. From demonstrating how an inhaler can help a child breathe easier to talking about how to minimize asthma triggers such as dust, tobacco smoke and other common substances at home, the team on board takes preventative and diagnostic care to a school's doorsteps.
THE PARTNERSHIP AND THE RESPONSE
Together, CHRISTUS St. Michael Health System and the University of Texas Health Northeast in Tyler, Texas, launched our Mobile Pediatric Asthma Program in 2014. It helps a truly underserved pediatric population in 12 Texas counties with a goal of implementing a collaborative program of chronic disease management for children who have serious respiratory problems to improve access to care and potentially prevent hospitalizations. Program participants who do not have a primary care provider are referred. This is a vital need; CHRISTUS St. Michael Health System's current community needs assessment shows access to care as one of our top 12 priorities. When access to care is limited, people may forgo routine preventive care or diagnostic services commonly provided by a primary care physician. Among the people we serve, nearly one in five (19%) self-reported not having a consistent source of primary care, or someone they consider their personal doctor.
The Mobile Pediatric Asthma Program has been very beneficial to students who were unaware they had asthma by screening them and directing them to appropriate caregivers as well as appropriate medications. Genesis PrimeCare, a federally qualified health center in the area, has been there as a helpful follow-up for those young Medicaid patients needing primary care and pediatric asthma care. Asthma can be very hard on families living in poverty or without health insurance, and proper asthma management may be difficult when you are worried about paying for other crucial things like food or housing. Not only that, but a lack of transportation can also influence effective asthma management. That is why it is an opportunity to address pediatric health concerns like asthma at a child's school.
The National Asthma Control Program, launched by the Centers for Disease Control and Prevention in 1999, suggests children who receive asthma-management training and evaluation have fewer hospitalizations and fewer days when their symptoms were so severe that they had to cut back on activities than those who do not.1 However, there is much more work to be done. For children who cannot easily access health care providers, schools can be a particularly effective route for evaluation and education, as can the internet and social media.
Smith is encouraged by outreach efforts like the ones in Texarkana and has also made himself available online. He has put together an important education video to help mom, dad, or anyone else who cares for a young asthmatic because getting an asthma diagnosis means you have to learn some new lingo.2 Passing on those new phrases and education accurately can be challenging, and a 20-minute visit in a doctor's office might not be enough.
It's just one more way that we have to meet our patients where they are, in new ways and when possible on their turf. No one should be kept in the dark about asthma, and most certainly not left on the sidelines or sitting out on life. At CHRISTUS, we believe children with asthma deserve to live their best lives without worries about trips to the emergency room, and we hope these replicable interventions help them do just that.
SUE JOHNSON is director of advocacy and community planning for CHRISTUS St. Michael Health System in Texarkana, Texas.
- Centers for Disease Control and Prevention's National Asthma Control Program: https://www.cdc.gov/asthma/nacp-20-years.htm.
- Asthma education video: https://www.christushealth.org/santa-rosa/childrens-hospital-of-san-antonio/services-treatments/allergy-asthma-and-immunology/asthma-education.
Copyright © 2019 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3490.