The Consortium for Infant and Child Health (CINCH)
When 8-year-old Tyler comes to school with a cough, his teacher notices. When it gets worse on the playground, she walks him to the nurse’s office. The nurse consults Tyler’s asthma action plan and gives him two puffs of the albuterol she keeps in her office for him. She calls Tyler’s mother at work to tell her that he has had asthma symptoms and received albuterol during the day, and she recommends a follow-up visit with his doctor to make sure that his asthma is under control.
Five years ago, this scenario would not have been possible in Hampton Roads, Virginia. School nurses had few options but to send children home or call 911 when a student experienced asthma symptoms. Asthma action plans were all but unknown, and few students had access to rescue medications at school. More significantly, few understood that children with chronic asthma require consistent, long-term care to manage their asthma. Today, thanks to the efforts of the local Consortium for Infant and Child Health (CINCH) the region has made great strides in improving the lives of children with asthma and their families.
Of the 440,000 children in Hampton Roads, the largest metropolitan area in the Southeast, CINCH estimates that 10 percent to 15 percent (44,000 to 66,000) have been diagnosed with asthma. The region’s geography and demographics compound the challenges posed by high asthma rates: the area is a unique group of coastal communities connected by a complex system of bridges and tunnels that, in some places, creates pockets of poverty and isolation. Nearly a third of Virginia’s poor families live in the region, and the city is well below the state average for critical health indicators.
Magnifying the Community's Voice
Originally organized as a coalition to promote childhood immunization, CINCH's asthma efforts grew dramatically with support from the Robert Wood Johnson Foundation through the Allies Against Asthma program in 2001. “The first thing we did with support from the Robert Wood Johnson Foundation was focus groups,” says Fran Butterfoss, Ph.D., CINCH founder and researcher at the Center for Pediatric Research and faculty member at Eastern Virginia Medical School (EVMS). “We talked to school nurses, to families, to providers, and what we found was that asthma education in Hampton Roads was often inadequate, providers were not always compliant with national guidelines, and some children still lacked insurance or a medical home.”
Previous studies had suggested that many asthmatic children in Hampton Roads were not being treated in accordance with the latest guidelines. In one survey, half of the children seen in local emergency departments and 68 percent of those hospitalized were using only short-acting beta agonist “rescue” medications to treat their asthma. Many used rescue medications weekly and had no access to medication at school.
With a deep understanding of local needs and challenges, CINCH created a comprehensive, integrated community action plan organized around three sectors of concern: health care providers, schools and communities. “People support what they help to create,” says Dr. Butterfoss, “and by involving community members in planning we ensured their continued commitment.”
Improving Provider Compliance
“For medical professionals, the pace of coalition work is slow and making the time commitment is difficult,” says EVMS pediatric asthma specialist Cynthia Kelly, M.D.
To make local providers part of their efforts, CINCH rolled out a nationally recognized provider education program—PACE—that was easy to complete and offered proven results. PACE brings physicians up-to-date with National Institutes of Health (NIH) National Asthma Education and Prevention (NAEPP) guidelines through case-by-case discussions, and emphasizes the importance of asthma action plans for all patients.
“Physicians who complete PACE training really benefit from group interaction and the ability to bring examples to the table and discuss them with colleagues,” says Judith Taylor-Fishwick, a CINCH coordinator, Assistant Professor of Pediatrics at EVMS and current head of the National Respiratory Training Center (NRTC). “You could see the interchange between the specialist, the pediatricians and the health behaviorist working—people sharing. That doesn't always come across in a ‘talk and chalk’ session.”
“Overall, I think our greatest success was working with providers to bring their practice closer to National Heart, Lung and Blood Institute guidelines,” says Dr. Butterfoss. Forty-eight of 55 major practices in the region received intensive education, either through PACE or the NRTC Asthma Essential Skills Workshop.
The “Asthma Ladies”
“The more we learned about Hampton Roads from hospital and health department data, the more we saw the need to focus on public housing. We targeted the city's asthma ‘hot spots,’ the areas where children with the highest rates of hospital admissions and emergency department visits lived,” recalls Taylor-Fishwick.
The CINCH team recruited 14 local residents to train for a health ambassador program aimed at local housing projects, ultimately hiring three to begin individual outreach and education sessions. The ambassadors went door-to-door in some of the city's toughest neighborhoods, gaining trust and identifying families who needed help managing their children's asthma. Immediately recognizable in their blue and green shirts, the “Asthma Ladies” have become community fixtures.
Asthma ambassador Xena Opie meets with a local family. (Photo courtesy of Sangjib Min/The Daily Press)
“I love this job,” says Xena Opie. “CINCH has done a lot for families who would otherwise have no way of knowing how to take care of their kids with asthma. There's so much turmoil and isolation in these homes that sometimes just having someone to talk to makes all the difference. Once you get across that you're not there to change them as a person or harass them—you're just there to help —you're in. It's all about trust.”
In addition to identifying families in need of additional care, the asthma ambassadors provide training in medication use, refer families to services, and even accompany clients to doctor's appointments. Helping families get control of the indoor environment is a key step, and the ambassadors often come armed with cleaning supplies and gentle lessons about the ways in which cockroach droppings and secondhand smoke can trigger children's asthma. At some sites, Opie and her colleagues put in work orders for repairs, noting that as outsiders, they often get a quicker response from maintenance. “Helping a family have control over their environment is so important,” she says. “We may not reach everybody, but the people we do reach are talking, and they will help somebody else.”
A Focus on Housing
The stability and staffing made possible through the Allies grant enabled CINCH, in partnership with the local housing authority, to pursue Healthy Homes funding from the Department of Housing and Urban Development (HUD) to expand an enhanced version of the Ambassador program in Newport News. The target neighborhoods contain the largest number of low-income, female-headed households with children under the age of 18 in the entire city. As in the Allies pilot program, Ambassadors assess children's home environments through visits, interviews and environmental sampling. They then provide in-home asthma education and serve as a bridge between the community and health professionals. Remediation efforts include the distribution of HEPA filter vacuums, new mattresses and mattress covers, and nebulizers. Asthma mini-summits at six of seven local public housing communities trained residents, maintenance and administrative staff about how to ameliorate environmental triggers for asthma.
Standardizing Asthma Action Plans Across School Districts and Across the State
Working with local providers, insurers, school districts and parents over the course of several months, CINCH created a standardized asthma action plan for the region that has proven key to improving the process of care in the region and is now being used throughout the state. CINCH's ability to coordinate collaboration and standardization across several political entities—including seven school districts—is a model for how coalitions can unify and speed change.
Early results show a lasting impact: in the 2003-2004 school year, local school districts saw a 14 percent increase in the number of children with asthma action plans. All physicians have been trained in using asthma action plans, and more children have the same plan—important in a region where families are so mobile.
CINCH's school focus does not end with asthma action plans; each year the coalition distributes more than 1,400 back-to-school kits through elementary school nurse managers. The kits include asthma action plan forms and low-literacy educational materials for parents. To ensure that local students have access to appropriate rescue medications at school, CINCH helped to author local codes that make Hampton Roads among the first cities in Virginia to have a nebulizer law in place that allows students to carry rescue medications to school. Working with local insurers, CINCH encourages physicians to use the appropriate prescribing language to get their patients two sets of equipment: one for home and one for school or daycare. A standard fax communication form helps school nurses, physicians and local emergency departments share information.
Helping to Build Coalitions Statewide
The coalition's efforts do not stop in southeastern Virginia. CINCH coalition and staff members have served on the Virginia Asthma Coalition and its steering committee, and have connected with the CDC-funded Richmond-area asthma coalition.
Sharing information and strategies, the group plans to turn its energies to working for asthma education reimbursement, tracking the use of asthma action plans in schools around the state, and supporting statewide dissemination of treatment guidelines.
“Coalitions bring together a variety of realms to make an impact,” says Dr. Kelly. “With CINCH, we have been able to show how important it is for a community to have physicians trained in the latest guidelines, universal asthma action plans and access to medications at school. We have evidence of their benefit.”
CINCH is located at the Center for Pediatric Research and Community Health at Eastern Virginia Medical School (EVMS), which serves as its lead agency. CINCH collaborates with the Children's Hospital of The King's Daughters and over 200 community members who represent public and private health care, industry, academic and religious institutions, military and service agencies.
CINCH was established in 1993 to improve childhood immunization rates in the Hampton Roads area. Five years later, CINCH added an asthma workgroup. Key programs included:
- EZ Breathers for children in Head Start;
- Asthma Ambassadors outreach to families living in public housing;
- A series of housing summits in which housing authorities and tenants joined forces to strengthen asthma-friendly housing policies and environmental trigger control; and
- Resources that include a standardized asthma action plan adopted by seven local school districts, low-literacy materials and a back-to-school pack.
Strategies and Programs
- Regional Asthma Action Plan
- Physician Asthma Care Education (PACE) and other training for health care providers
- Low-literacy educational materials
- Home visiting program and curriculum for high-risk children and families
Children and Families Served
CINCH estimates that 60 percent of the low-income asthma families in Hampton Roads were reached by interventions in their homes, housing, schools or health care provider offices.
Local ZIP codes with the greatest volume of pediatric asthma cases received in-depth interventions, such as home visits and physician education, while the region as a whole was served by the development of a standard asthma action plan and asthma information media campaign.
- Endorsed a universal asthma action plan that is currently used by seven local school districts, regional pediatricians, the Virginia Asthma Coalition and the state of Virginia.
- Conducted asthma training in 87 percent of pediatric practices, including 33 pediatricians, 15 pediatric nurse practitioners and 21 registered nurses.
- Reached 200 families in six public housing communities through Asthma Ambassadors.
- Conducted EZ Breathers in 41 Head Starts and four daycares.
- Witnessed a 14 percent increase in the number of students with asthma action plans during the 2004-2005 school year.
- Coalitions are able to change the way asthma is cared for in communities.
- Ensure community commitment by involving the community in the planning process.
- Target areas facing the greatest environmental and demographic challenges.
- Work across systems to encourage collaboration and effect policy change.
- Limit the number of interventions you undertake; instead, focus resources on a limited number of viable projects.
The Asthma Ambassadors program continues with funding from the U.S. Department of Housing and Urban Development (HUD). Allies continues to advocate for clean indoor air and to educate providers via PACE, school nurse training and a biannual Asthma Summit. CINCH continues to work in multiple areas that affect children’s health in Hampton Roads.