Pediatric Asthma in Buffalo: A Research Synthesis Community Health Foundation of Western and Central New York November 2007
Executive Summary Approximately 43% of children under age 18 and nearly half of all families with young children (under the age of 5) in the city of Buffalo live in poverty (US Census Bureau 2006). Today Buffalo faces many structural problems, ranging from the economic and labor market losses of the past several decades to substandard housing and limited job training, affordable child care or health insurance, that contribute to these troubling poverty rates (Sommer 2007). Children living in the inner city, largely minority and segregated communities of Buffalo also face alarming numbers of diagnosed and undiagnosed asthma. Asthma is a leading chronic condition in children in the US today. Asthma is far more pervasive within communities of poverty, urban centers and the racial/ethnic disparities are tremendous (Bloom and Dey 2006; Akinbami 2006; Lwebuga- Mukasa and Dunn-Georgiou 2000; Stanton, Dougherty and Rutherford 2005). The costs of asthma are significant not only financially in health care costs and missed school days, but the costs for individual children and families are also tremendous. Although not curable, asthma attacks can be minimized and controlled with preventative medicine, regular and managed physician care, removal or reduction of environmental allergens and triggers, and usage of occasional rescue medications (Akinbami 2006; Bloom and Dey 2006). But for those with uncontrolled asthma, asthma often means urgent care and emergency room visits, daily medications or rescue medications, interrupted sleep and general lethargy. Unfortunately those with the fewest resources in our communities are frequently those most unable to manage childhood asthma. Socio-demographic factors, especially poverty and race, explain a lot about the prevalence of asthma in many cities, and Buffalo is no exception. Buffalo remains in the top 100 (ranked #65 behind only New York City in cities in New York State on the list) most challenging places to live with asthma according to the Asthma and Allergy Foundation of America (2007 Asthma Capitals). While much work has been done to estimate specific prevalence rates for the city, the results find a wide range from 13 to 22 percent depending on the specific sites and populations studied. Recent work has done a lot to tie environmental toxins into the asthma picture in Buffalo both from the peace bridge area (Oyana, Rogerson, and Lwebuga-Mukasa 2004; Oyana and Lwebuga-Mukasa 2004; Lwebuga-Mukasa, Oyana, and Johnson 2005) and proximity to other hazardous waste materials and industrial sites (Bureau of Environmental and Occupational Epidemiology Final Report 2005). Asthma requires regular medical attention and management to be controlled (Thyne et al 2006). Children whose asthma is controlled can participate in typical childhood activities relatively worry-free. However those who asthma is less controlled often have more frequent asthma attacks and may experience more lasting negative consequences from their asthma including missed school days [1]
(Thyne et al 2006; Federal Interagency Forum on Child and Family Statistics 2007). While specific studies around asthma impacts have found that care is often not in compliance with federal guidelines, it is often unclear how and why that occurs. Data available on pediatric hospital discharge rates in Buffalo for small children with asthma are high and may indicate many cases of uncontrolled asthma in the community. There are many national initiatives and organized programs seeking to address the problems of asthma and asthma management but at their core all seek to manage asthma in a multi-faceted way because despite noted clinical successes, pediatric asthma is still pervasive (Clark et al 2006). Several of these programs have been implemented in Buffalo with moderate success, but it does not appear that many of them remain in existence over long periods of time. When the funding ends, so does the project or intervention. Despite much attention to the issues and complexities of asthma in children, it seems we still have a long way to go in solving the mystery of how asthma begins and the most effective and enduring ways to manage the condition. Pediatric asthma is most often found in inner-city, poor children from racial or ethnic minorities. The children and families who are least able to cope with a complex, chronic disease, such as asthma, are often its greatest sufferers. While this document may function as background details, it also highlights several holes in the existing research and information about child asthma in Buffalo. - No one clear measure of prevalence or incidence of childhood asthma in Buffalo - Limited accessible information on utilization and impacts - Missing voice of patients and caregivers - Dispersed program efforts and activities with limited coordination or communication Much has been done in Buffalo, but there is still more work to do. Asthma is a multi-faceted medical problem but also a community problem and public health problem. No single intervention is going to decrease rates of asthma It needs this (Allies Against Asthma) type of community coalition to have a real impact Long Beach Alliance for Children with Asthma (LBACA) Coalition Member in Clark et al 2006). There is no one answer for Buffalo. Often health problems such as asthma can be traced to far more structural community problems, including poverty. Buffalo faces serious economic and community concerns over the next few years, building a strong foundation of information on asthma and a coalition approach to managing the problem of pediatric asthma in Buffalo is a critical first step. [2]
Introduction Asthma is a leading chronic condition in children in the US today. According to estimates from the National Health Interview Survey, about 13 percent of children 0-17 had been diagnosed with asthma at some point in their lives (Akinbami 2006; Federal Interagency Forum on Child and Family Statistics 2007) and, in 2005, 8.9% or 6.5 million children ages 0-17 currently had asthma (Akinbami 2006). Perhaps most disconcerting is the unequal way in which it affects children in the US. In a recent AHRQ report, it was concluded that no matter what race or ethnicity, living in poverty often coincides with many of the biggest health disparities in access and quality (Clancy 2006). This is clearly evident when evaluating pediatric asthma. Asthma is far more pervasive within communities of poverty, urban centers and the racial/ethnic disparities are tremendous (Bloom and Dey 2006; Akinbami 2006; Lwebuga-Mukasa and Dunn-Georgiou 2000; Stanton, Dougherty and Rutherford 2005). Asthma typically produces symptoms of wheezing, breathlessness, chest tightness, and nighttime or early morning coughing (Erie County Department of Health Community Health Assessment 2005-2010; Akinbami 2006; Federal Interagency Forum on Child and Family Statistics 2007). It is particularly difficult to diagnose in small children and if left untreated can result in permanent disability or even death (Akinbami 2006; Asthma and Children Fact Sheet http://www.lungusa.org/site/apps/nl/content3.asp?c=dvluk9o0e&b=2058817&co ntent_id={05c5fa0a-a953-4bb6-bb74-f07c2eccaba9}¬oc=1 last accessed 11/20/2007). There is no clear cause of asthma, but there is evidence to suggest that a variety of environmental triggers and personal behaviors can initiate asthma attacks (Akinbami 2006; NHLBI Asthma definitions http://www.nhlbi.nih.gov/health/dci/diseases/asthma/asthma_whatis.html last accessed 11/19/2007). Most notably allergens including pollen, dust mites, animal dander, mold, cockroaches and their droppings or environmental irritants such as tobacco smoke and automotive exhaust as well as activities including exercise are known asthma triggers (Erie County Department of Health Community Health Assessment 2005-2010; Akinbami 2006; NHLBI Asthma definitions http://www.nhlbi.nih.gov/health/dci/diseases/asthma/asthma_whatis.html last accessed 11/19/2007). Unfortunately many of these environmental triggers also coincide with people who live in poverty and their experiences in less than ideal housing situations where there is dampness, allergens like cockroaches, and poor ventilation (Bureau of Environmental and Occupational Epidemiology Final Report 2005). There is also evidence to suggest that communities of poverty may be located in closer proximity to non-household based hazards in the environment such as air contamination from hazardous waste sites, industrial buildings and automotive exhaust based air pollution (Bureau of Environmental and Occupational Epidemiology Final Report 2005; Oyana, Rogerson and Lwebuga- Mukasa 2004). Smoking prevalence is also higher among adults living below the [3]
federal poverty level, thus children in communities of poverty may be more likely to be exposed to secondhand tobacco smoke (CDC MMWR 2007b). The costs of asthma are significant. Estimated nationally at $14 billion in 2001 for physician office visits, emergency department (ED) visits, hospitalizations, and missed school or work days (National Asthma Survey, NYS Summary 2006; NYS Asthma Surveillance Report 2005), the costs are clearly significant financially. However financial costs aside, the human health and quality of life costs should not be minimized. Children with asthma may have to limit their exercise and outdoor activities, may miss more days of school, may visit the ED more regularly and may suffer more broad based health consequences from nocturnal asthma attacks including an inability to concentrate and lethargy (Federal Interagency Forum on Child and Family Statistics 2007; Akinbami 2006). This is especially true for those children whose asthma is uncontrolled. Although not curable, asthma attacks can be minimized and controlled with preventative medicine, regular and managed physician care, removal or reduction of environmental allergens and triggers, and usage of occasional rescue medications (Akinbami 2006; Bloom and Dey 2006). In recent decades both medications and school and community based interventions have been more successful in managing asthma in both adults and children (Lara et al 2002). However, some research has shown that children enrolled in Medicaid managed care plans, thus in many states living below or near the poverty line, often indicate underuse of preventive medicine, which may be a signal of a lower quality of care (Stanton, Dougherty and Rutherford 2005). In addition, prevalence rates among children remain at historically high levels (Akinbami 2006), so there is clearly still a long way to go. The research on pediatric asthma is extensive covering the ground of prevalence and incidence estimates, clinical interventions, treatment protocols and program evaluation, as well as assessments of environmental triggers and ecological impacts. As of today there is no magic answer to the complex question of pediatric asthma and the pervasiveness with which it still reaches a range of children. It is clear that no one answer, program or policy will be enough to adequately address pediatric asthma. A broad package of policies and programs that extend beyond the borders of the school to parents as well as the larger community is necessary to manage and intervene in child asthma. With that foundational information about asthma in children most broadly as context, this summary will now provide a closer look at the specific situation of Buffalo, NY to gather what we know to date about the prevalence, prevention and treatment of childhood asthma in that city. Working with various community members and organizations as well as health providers and plans, CHFWCNY seeks to develop and implement a community plan for impacting pediatric asthma in Buffalo, that is purposeful, collaborative and outcome driven. Ultimately the organization is striving to see that children in communities of poverty reach their [4]
full physical, emotional and academic potential. This document is a first step in understanding the current state of pediatric asthma in Buffalo and what directions and opportunities exist for the future. The Data on Asthma Before we begin it is important to make several notes about asthma related research and data. Prevalence rates, the proportion of the population with asthma at a certain point in time, are utilized and cited throughout the literature on asthma as there is no national measure of asthma incidence (Akinbami 2006). Prevalence numbers can vary somewhat depending on what source is employed for the measure, the sampling frame of the data collection and the reported age groups and time periods. Because there is no national measure of asthma incidence and asthma prevalence numbers can vary, it is important to carefully review the statistics that are utilized in asthma related research. It also means that there is no one source of information on incidence of asthma or a consistent metric with which to compare across people, states or time (http://www.cdc.gov/asthma/questions.htm last accessed 11/20/2007). Survey data is often used to provide indicators of prevalence as well as to assess knowledge of and compliance with medical interventions. Typically survey data incorporates two or three questions to obtain crude prevalence measures. The questions assess the magnitude of those ever diagnosed with asthma, current asthma sufferers and recent asthma attacks typically over a 1 year time period. Recent asthma attack numbers can demonstrate in an unrefined way the number and percentage of children who may have poorly controlled asthma. This information is, of course, in addition to related data on asthma mortality, health insurance coverage and usage, utilization data on asthma hospitalization, ED visits, physician visits, and urgent care visits, and school based health care information on usage and needs of medications that fall into an assessment of prevention and treatment. (See Figure 3-1 above from the NYS Asthma Surveillance Report 2005 for a visual description.) Buffalo s Story Source: NYS Asthma Surveillance Report 2005 Socio-demographic factors, especially poverty and race, explain a lot about the prevalence of asthma in many cities, and Buffalo is no exception. To start let s place the city of Buffalo in some perspective. Buffalo is the second largest city in New York State and the largest city in the western region with a population of 292,648 (Erie County Department of Health Community Health Assessment 2005- [5]
2010). According to data from the US Census Bureau and the 2006 American Community Survey, nearly one quarter (23.8%) of families in Buffalo live below the poverty line, 57% of the population over 16 years of age is in the labor force, approximately 5 percent (4.7%) of the population are foreign born and slightly more than one-fifth (22.8%) of the housing units in Buffalo are vacant (Buffalo, NY Fact Sheet 2006 last accessed 11/15/3007). Population in Buffalo has declined since the 1990 census (Erie County Department of Health Community Health Assessment 2005-2010) and today approximately 43% of children under age 18 and nearly half of all families with young children (under the age of 5) in the city of Buffalo live in poverty (US Census Bureau 2006). Buffalo faces many structural problems, ranging from the economic and labor market losses of the past several decades to substandard housing and limited job training, affordable child care or health insurance, that contribute to these troubling poverty rates (Sommer 2007; Erie County Department of Health Community Health Assessment 2005-2010). While Erie County has one of the lower overall rates of diagnosed asthma for counties in New York State at just under 8% in 2004 (National Asthma Survey- NYS Summary Report 2006), Eric County numbers may be masking stark differences across the county and especially within the city of Buffalo. Buffalo faces unique challenges in terms of demographics and environmental and housing risks that are unique to the city. There are heavy concentrations of poverty in the city of Buffalo and racial and ethnic diversity that does not exist in the county at large. Housing and environmental factors within the city pose additional challenges in terms of the proximity to the Peace Bridge Complex on the west side, where vehicle emissions from the major truck corridor may increase asthma and respiratory problems, and a poor state of housing with many older buildings, vacant premises and a majority of rental occupied housing (Erie County Department of Health Community Health Assessment 2005-2010). The communities of poverty face exceptional challenges on a daily basis to find and maintain employment, housing and food security in addition to accessing health care and medications and cultural divisions in terms of medical compliance and delivery. Prevalence Information on the current pediatric asthma incidence and prevalence is critical to being able to document and assess the problem of childhood asthma in Buffalo. Buffalo remains in the top 100 (ranked #65 behind only New York City in cities in New York State on the list) most challenging places to live with asthma according to the Asthma and Allergy Foundation of America (2007 Asthma Capitals) and much work has been done to estimate specific prevalence rates for the city. These studies highlight a great range of numbers and measures, depending on the age range and survey method of those studied, and often focus on adult prevalence rates instead of children (Oyana, Rogerson and Lwebuga-Mukasa 2004; Lwebuga-Mukasa, Wojcik, Dunn-Georgious, and Johnson 2002; Almeida and Lwebuga-Mukasa 2001; State of the Region Project November 2000 and April 2006;Oyana and Lwebuga-Mukasa 2004). [6]
The few studies that highlight the specific city of Buffalo and children find a range of prevalence rates from 13 to 22 percent. In a study undertaken by the Bureau of Environmental and Occupational Epidemiology in the late 1990s of environmental risk factors in children 1-17 years of age in the city of Buffalo, a 17.6 percent ever diagnosed rate and 13.2 percent currently diagnosed rate was found (Bureau of Environmental and Occupational Epidemiology Final Report 2005). A study of elementary school children (ages 4-13) at around the same time found 20 percent were currently diagnosed with asthma and another 18 percent were suspected of having asthma 1 (Lwebuga-Mukasa and Dunn-Georgiou 2000). In 2005 Oyana and Rivers looked at administrative databases to study the spatial aspects to childhood asthma in the city of Buffalo. They found a range of less than 1 percent to nearly 13 percent of diagnoses asthma in zip codes throughout the city of Buffalo (Oyana and Rivers 2005). Finally in a recent poster presentation Lwebuga-Mukasa and Niewczyk found a 22.3 percent asthma prevalence rate based on a survey of school age children 4 to 14 years of age (2006). The authors also found a crude current incidence rate of 8.2 percent based on the percentage of new physician diagnosed cases in the past 12 months divided by the total number of children with previously diagnosed asthma (Lwebuga-Mukasa and Niewczyk 2006). Despite these recent efforts to uncover basic prevalence and incidence numbers, it is clear that no one uniform source yet exists and that understanding more about prevalence is important, especially in understanding asthma in children. We do, however, know some additional details about variations in prevalence in Buffalo and connections to environmental triggers. Specifically from a study of asthma in school-age children in several western New York communities, we learn that Buffalo asthma cases follow a pattern similar to that of the national and state level data (Lwebuga-Mukasa and Dunn-Georgiou 2000). For example, boys had higher odds of having diagnosed asthma than girls, as did African-Americans compared to Caucasians (Lwebuga-Mukasa and Dunn-Georgiou 2000). This study also demonstrated that environmental factors including smoking, mold or dampness in the house, and the presence of pets, dust mites and cockroaches may be potential triggers for asthma, but indicated that further study was still necessary. Later work by these same authors and other colleagues has demonstrated further connections to environmental triggers for asthma sufferers of all ages (Lwebuga- Mukasa, Wojcik, Dunn-Georgiou, and Johnson 2002). Additional work has begun to make a case that exposure to environmental pollutants, such as those from car and truck exhaust in high traffic areas near the Peace Bridge, may also increase at least adult asthma hospitalization and prevalence rates(oyana, Rogerson, and Lwebuga-Mukasa 2004; Oyana and Lwebuga-Mukasa 2004; Lwebuga-Mukasa, Oyana, and Johnson 2005). One study 1 Current asthma was defined as using medicines in the past 12 months or having been told by a health profession that the child has asthma. Suspected asthma was defined as a positive response to a serious of questions about the common symptoms of asthma including repeated attacks of wheezing or coughing after exercise or when exposed to pollen, pets or molds in the past 12 months (Lwebuga-Mukasa and Dunn-Georgiou 2000). [7]
has extended this work to children and found similar results where children in close proximity to the US-Canadian border crossing and the associated traffic pollution had an increased risk of asthma (Oyana and Rivers 2005). Similar results were also found in the Childhood Asthma and Environmental Risk Factors study done by the Bureau of Environmental and Occupational Epidemiology in the late 1990s. They found that while genetic pre-disposition to asthma was the strongest risk factor, that chemical odors (as a sign of proximity to hazardous waste sites) and dampness in the home were also large risks for asthma in kids (Bureau of Environmental and Occupational Epidemiology Final Report 2005). The information learned to date is important in our collective understanding of the problem of pediatric asthma in Buffalo. That said, not being able to adequately and consistently report asthma incidence will continue to be troublesome moving forward as it is critical to statistically document the degree to which providers and organizations on the ground in Buffalo indicate the extent of the pediatric asthma crisis. Impacts Asthma requires regular medical attention and management to be controlled (Thyne et al 2006). Children whose asthma is controlled can participate in typical childhood activities relatively worry-free. However those who asthma is less controlled often have more frequent asthma attacks and may experience more lasting negative consequences from their asthma including missed school days (Thyne et al 2006; Federal Interagency Forum on Child and Family Statistics 2007). The impacts of asthma extend beyond the individual sufferers to the family or household, school and community. Such impacts appear as disruptions in the normal activities of childhood and as potential long-term health consequences. As well as financial costs for missed school and work, health care utilization costs and environmentally as communities may be more or less susceptible or have higher prevalence rates depending on their location and proximity to toxins. Communities with high numbers of children and families living in poverty may also experience higher prevalence of asthma thus taxing the community resources for health care and community services. Hospitalization due to asthma is an indicator of not only current asthma prevalence, but also access to appropriate medical care, compliance with prescribed medical plans and often correlates with socioeconomic status (Debley, Redding and Critchlow 2004). Those living in communities of poverty are more likely to be without health insurance and may be less likely to have a usual source of care (Brown 2005) and thus may be less likely to get the care they need when it comes to asthma (Stanton, Dougherty and Rutherford 2005). Asthma related hospital admissions account for nearly 10 percent of all hospital admissions for children and adolescents in 2000 and nearly half of those hospitalizations are billed to Medicaid (Stanton, Dougherty and Rutherford 2005). [8]
In addition to hospitalization for asthma related conditions, children with uncontrolled asthma may utilize the emergency room to a greater extent than non-asthmatic children (Barta et al 2006). This, of course, does not account for routine and urgent care visits to health professionals that may be harder to estimate as being connected directly to asthma care nor does this measure, precisely, the prescription medicines that are being taken and at what periods of time. Source: State of the Region Project Asthma Update 2006 According to the New York State Department of Health there were 255 pediatric asthma hospitalizations (ages 0-4) in Erie county in 2004 (http://www.health.state.ny.us/statistics/chip/erie.htm last accessed 11/13/2007) (See figure from the State of the Region Project 2006) and the Erie County health assessment measures discharge rates per 100,000 at 338.8 for children 0-4 and 117.1 for ages 5-14 in 2002 (Erie County Department of Health Community Health Assessment 2005-2010). The Statewide Planning and Research Cooperative System (SPARCS) of the New York State Department of Health provides zip code specific asthma hospital discharge information for children in the city of Buffalo. Based on the author s calculation the average hospital asthma discharge rate in the city of Buffalo for children 0-17 over the years 2003-2005 is 34.5% per 10,000 population (http://www.health.state.ny.us/statistics/ny_asthma/hosp/zipcode/erie t3.htm last accessed 11/20/2007). However, this is one of the few measures available as most often the metrics are reported at the county and not city level and the information is readily available for adults but not always for children. For example, the Behavioral Risk Factor Surveillance System (BRFSS) provides only state level data as does the National Survey of Children s Health, but the National Health Interview Survey could provide estimates for the any region and age group but would confidential data access to obtain. Additionally health plans can provide data driven insights such as those with the Center for Health Care Strategies (CHCS) Best Clinical and Administrative Practices (BCAP) workgroup that is focused on Medicaid Managed Care (http://www.chcs.org/publications3960/publications_show.htm?doc_id=384761 last accessed 11/20/2007), but much of this information is not publicly available. So while it is somewhat easier to access utilization data for kids in asthma related care, it is far from perfect. [9]
In addition to measured health related outcomes, it is clear that missed school days are more common in asthmatic children (Lara et al 2002; National Asthma Survey, NYS Summary 2006; NYS Asthma Surveillance Report 2005). There is a long literature linking student absenteeism with achievement and even student dropout rates for students of all backgrounds (see Epstein and Sheldon 2002). Overall asthma is connected to lower productivity of kids in school. While a single student s absence may be harmful for his/her own academic outcomes, it may also influence financial aid from the state to schools. New York uses a measure of average daily attendance, for example, to distribute aid to school districts (Brent 2001). Only one study was found that directly speaks to impacts of pediatric asthma care in Buffalo. It was from 1999 and looked at the quality of care in the pediatric emergency room at the Children s Hospital of Buffalo (CHOB) (Aronica et al 1999). The study found that in the emergency room of CHOB most pediatric asthma patients were not in compliance with federal guidelines (Aronica et al 1999). They lacked a written asthma plan, had not called their physician before going to the emergency room, were non compliant with their medications, and were not avoiding known triggers including tobacco smoke (Aronica et al 1999). This study is today somewhat dated, but provides a glimpse at least into the impacts of asthma care in 1999. Other than this one study on quality of care, there is little mention in the other studies found about Buffalo in terms of outcomes, costs or long term results. It is clear that there is some data from the health plans that may estimate annual city wide costs, but to my knowledge there is no publicly available information. Such information would be useful to community wide planning, such as ours, to understand the magnitude and reach of the pediatric asthma problem for Buffalo s children. Prevention and Treatment There is no cure for asthma, but it can be successfully controlled and treated. While there are clear clinical innovations in terms of medicine that have helped to manage asthma more effectively in recent years, this document is not an attempt to highlight such work. Instead it highlights community, school and practice based interventions that attempt to manage childhood asthma beyond basic clinical treatments. Typically such work is based on a larger model or framework such as the medical/social model (Thyne et al 2006) or the chronic care model (Clark et al 2006) and focuses on working together as medical providers, parents, insurers, community agencies, policy makers and individuals to address problems within a given community. There are many national initiatives and organized programs seeking to address the problems of asthma and asthma management but at their core all seek to manage asthma in a multi-faceted way because despite noted clinical successes, pediatric asthma is still pervasive (Clark et al 2006). In recent years consensus [10]
has built in the literature that no one answer to pediatric asthma appears to exist. Strategies must incorporate interventions at every stage of the chronic condition as well as work not only with individual afflicted children, but also their families, friends, schools, broader communities, and health plans and providers. Medical diagnosis and treatment is only one portion of the battle against asthma. While this list is far from complete, most agree that the following key factors are important in understanding why pediatric asthma has not been well managed. There is less than full compliance and management of asthma by children and their families, not all clinical care meets established medical guidelines, and despite good intentions on the part of many institutions (schools) and community organizations there has been a lack of support in terms of funding and organization to effectively manage resources across communities (Aronica et al 1999; Clark et al 2006). While recognizing and diagnosing cases of asthma is important, once diagnosed it is critical to shift attention to patient education and active self-management to successfully manage or control asthma in children (Stanton, Dougherty, and Rutherford 2005). Beginning in the early 1990s in response to a growing number of cases of asthma, the National Health, Lung and Blood Institute (NHLBI) of the National Institutes of Health (NIH) established guidelines for the diagnosis and management of asthma (Aronica et al 1999). The expert panel report, commissioned by the National Asthma Education and Prevention Program (NAEPP), formulates the guidelines that began in 1991 and were just updated again in 2007 (http://www.nhlbi.nih.gov/guidelines/asthma/ last accessed 11/19/07). These highlight the basic standards of care for assessing and treating asthma in both adults and children. Because children spend a great deal of time in school and a broad and captive audience can be reached, the school is often a site of intervention for asthma care. Buffalo is no exception here as well. There have been several initiatives undertaken in Buffalo to manage pediatric asthma over the past several decades. In 1996-1998 a pilot program was undertaken in several Buffalo public schools (Lwebuga-Mukasa and Dunn-Georgiou 2002). For all children in the school who has diagnosed asthma and needed medication, the intervention stipulated that they should have a written asthma care plan from their provider that indicated daily, preventative medications and measures to be taken in the event of an asthma attack (Lwebuga-Mukasa and Dunn-Georgiou 2002). It also offered education to children, parents and school staff about how to recognize triggers and reduce or remove them from their household as well as how to respond in the event of an asthma attack (Lwebuga-Mukasa and Dunn-Georgiou 2002). This study was based largely on the National Cooperative Inner-City Asthma Study (NCICAS) and found that the intervention was feasible and resulted in a decreased frequency of attacks in school (Lwebuga-Mukasa and Dunn-Georgiou 2002). [11]
Breathe Easy in Erie County was an initiative from the New York State Department of Health, the Erie County Health Department, UB Department of Family Medicine's Center for Urban Research in Primary Care, and Erie County school districts. It looked at asthma and environmentally related triggers of asthma in children in Buffalo (Bureau of Environmental and Occupational Epidemiology Final Report 2005). This study recruited households from the city of Buffalo and completed a series of interviews with them from an initial demographic profile to allergy and lung function tests and measurement of proximity to toxins from either hazardous waste sites or active industrial factories (Bureau of Environmental and Occupational Epidemiology Final Report 2005). The study found that increased levels of toxins in the air might be connected to increased pediatric asthma, even after taking into account socio demographic factors (Bureau of Environmental and Occupational Epidemiology Final Report 2005). Additionally having a family member with asthma, having limited health care access or exposure to household environmental factors such as parental smoking also increased the likelihood of having childhood asthma (Bureau of Environmental and Occupational Epidemiology Final Report 2005). While the study re-iterates the complex nature of asthma care and triggers in children, it also highlights the importance of taking into account key environmental factors (Bureau of Environmental and Occupational Epidemiology Final Report 2005). The Open Airways initiative (http://www.lungusa.org/site/pp.asp?c=dvluk9o0e&b=44142) was implemented through the New York American Lung Association in western New York schools also in the late 1990s. This program is aimed at asthmatic children age 8-11 to raise awareness and improve self-management skills in the children (http://www.lungusa.org/site/pp.asp?c=dvluk9o0e&b=44142 Last accessed 11/19/2007). According to Lwebuga-Mukasa and Dunn-Georgiou (2002) there were implementation concerns in western New York due to the lack of school nurses, but there were no peer-reviewed articles or even websites connection to the program that mention Buffalo that this author was able to find. Well documented in the literature are gross disparities in terms of access and incidence of asthma in inner cities. As a result the National Institute of Allergy and Infectious Disease (NIAID) funded a series of controlled trial known as the National Cooperative Inner-City Asthma Study (NCICAS). Following positive initial results, the CDC provided funding for the Inner-City Asthma Intervention (ICAI) that included a funded site in Buffalo (http://www.achp.org/page.asp?page_id=1015 last accessed 11/19/2007). The ICAI was designed to be the replication of the NCICAS research study model into a real world setting with the goal to find similar health results. Notably the goal was to have more symptom free days, improved quality of life and a reduction in urgent medical visits and hospitalizations for inner-city, low income children with asthma (Spiegel et al 2006). The program focus was on intensive asthma management and its primary staff was a fulltime asthma counselor, who was a [12]
trained social worker who worked with students, ages 5-11, and their families (Spiegel et al 2006; Wood et al 2006). The July 2006 issue of Annals of Allergy, Asthma and Immunology provides information on the collective experiences of the ICAI (see http://www.achp.org/page.asp?page_id=1015 for links to the articles; the website also contains the Alleviate Asthma! A Tool Kit for Health Care Organizations). However no outcome information was required for each site and thus the only data available is in aggregate form and not for the specific case of Buffalo. In 2001 through funding from the National Institute of Environmental Health Sciences, the West Side Community Asthma Project (WSCAP) was established to address the high asthma prevalence on the lower west side of Buffalo. Its goal was to target specifically the Puerto Rican residents of that community to enhance the community s ability to participate in asthma research and prevention/ management activities (Tumiel-Berhalter et al 2007). Using a pathways to health model (see figure to the left from the article), Tumiel- Berhalter and her coauthors describe the community based participatory research model implemented via WSCAP recently in Buffalo (2007). Results from the multi layered approach indicate that WSCAP was able to reach many different parts of the Puerto Rican community, but continued to face language barriers and was limited in its ability to showcase results due to limited evaluation metrics (Tumiel-Berhalter et al 2007). Source: Tumiel-Berhalter et al 2007 From the evidence listed above it is clear many and varied interventions have been tried with different degrees of success in Buffalo. Often it appears that the interventions are helpful in the short-term but resources do not remain in place over the long-term. It also appears that much of the interventions have been implemented individually and without broader community integration. That said, there have been successful demonstrations that should be explored further on a widespread scale. [13]
Conclusions Despite much attention to the issues and complexities of asthma in children, it seems we still have a long way to go in solving the mystery of how asthma begins and the most effective and enduring ways to manage the condition. Beginning with a rapid fire listing of statistics about pediatric asthma and why it deserves our attention, this document then highlighted what is known about the nature of childhood asthma in Buffalo in terms of prevalence, impact, prevention and treatment. As this is not and could not be an exhaustive summary of all work on pediatric asthma, it seems important re-iterate the reason and purpose of both this study and the community organizing efforts of the CHFWCNY. Pediatric asthma is most often found in inner-city, poor children from racial or ethnic minorities. The children and families who are least able to cope with a complex, chronic disease, such as asthma, are often its greatest sufferers. Children who can effectively manage their asthma are typically able to resume everyday childhood activities, but for those with uncontrolled asthma it often means urgent care visits, trips to the emergency, limited outdoor and exercise time and interrupted sleep. In spite of clinical innovations that offer better preventive and rescue medications, asthma rates in children are still high. Much work has been undertaken in recent years across the nation, in New York State and the city of Buffalo to address the management of pediatric asthma, but even with these efforts there is still work to be done. While this document may function as background details, it also highlights several holes in the existing research and information about child asthma in Buffalo. There is no one clear measure of prevalence and incidence in the city of Buffalo. There is only limited publicly accessible information on utilization data and impact costs. Despite multiple and different efforts in the western region of New York and in the city of Buffalo, specifically, program efforts and evaluations are documented only for a limited number of projects. The voice of the consumers and patients and caregivers seems to be missing from what we know about the asthma care management process in Buffalo. Less is established in the peer-reviewed literature about moving the collaborative process forward and little has been documented to date in Buffalo. Much specific site or intervention work has been done in the past but it often ends when the funding does and is not pervasive throughout the community. o No specific role designated for health plans, but there are relevant examples to explore from The Center for Health Care Strategies (CHCS) Best Clinical and Administrative Practices (BCAP) workgroup report from 2006 Improving Asthma Care for Children: [14]
Best Practices in Medicaid Managed Care. http://www.chcs.org/publications3960/publications_show.htm?doc_id =384761 Given the magnitude of the estimated problem of children in poverty living with asthma in Buffalo, the combined efforts to intercede in improving asthma management in the recent past and the breadth of interest in a community based organized plan, it is important to recognize that although much work has been done there is still more we can do. It is with that in mind that the CHFWCNY has chosen to pursue the Allies Against Asthma (AAA) program (http://www.asthma.umich.edu/), which is a community coalition oriented approach to combat pediatric asthma particularly in low-income and minority communities that follows the chronic care model (CCM) (http://www.asthma.umich.edu/about_allies/program_summary/aaaapproach.ht ml last accessed on 11/19/2007). At least one recent study has shown that children obtaining clinic based care under the CCM had better general and asthma specific quality of care indicators and there were additional increases in process of care metrics (Mangione-Smith et al 2005). Funded initially by the Robert Wood Johnson Foundation the AAA program seeks to empower community oriented pediatric asthma management strategies to increase the quality of life of asthmatic children, reduce hospital admissions, emergency room visits, and missed school days and create a sustainable strategy for asthma management in the community http://www.asthma.umich.edu/about_allies/program_summary/prog_sum.html last accessed on 11/19/2007). AAA funded 7 specific community coalitions, documented their approaches and their results and has helped to build a host of resources for communities to rely on in their own work with pediatric asthma (see appendix for additional case study highlights). It is the hope of the CHFWCNY and the advisory group that such a model can assist Buffalo in creating and implementing a community plan that addresses the pervasive and enduring impacts of pediatric asthma. Asthma is a multi-faceted medical problem but also a community problem and public health problem. No single intervention is going to decrease rates of asthma It needs this (Allies Against Asthma) type of community coalition to have a real impact Long Beach Alliance for Children with Asthma (LBACA) Coalition Member in Clark et al 2006). [15]
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