Audience

AS-ME packages can be designed to educate asthma patients or their families directly, or they can be intended for training healthcare professionals such as health educators, school nurses, or clinicians who engage patients in self-management activities. Five of 14 packages we reviewed were designed to teach self-management skills to adults with asthma, while five other packages provide education to children or adolescents and/or their families and caregivers. (Throughout this Technical Brief, “children” are defined as less than 10 years old and “adolescents” are defined as 10 to 17 years old.) Additionally, two packages are intended to train healthcare professionals, specifically school nurses and clinical pediatricians, respectively, in strategies for teaching patients. Finally, two packages can serve multiple audiences. A Breath of Life is used to train health educators who then teach children and families in their local communities. It was also designed to directly educate parents of children and adolescents with asthma. Asthma 101 has been used to teach adult patients directly, and also to train nursing students, school personnel, childcare providers, and coaches. (Note: Asthma 101 is no longer available as a training program. For those who are interested in the content, the workbook is available to download for free from the American Lung Association (ALA) website. ALA suggests that stakeholders review its Asthma Basics program as an alternative.)

Patient Population

Several packages were designed for use in specific patient populations. A Breath of Life is intended to serve Latino communities, while Women Breathe Free is tailored to adult women with asthma. Packages produced by the Asthma and Allergy Foundation of America (AAFA), including Asthma Care for Adults, Wee Breathers, and You Can Control Asthma, emphasize their content is appropriate for multicultural, minority, and/or low-income communities. The packages we reviewed do not indicate whether their materials are suited to clinical subgroups at higher risk for poor outcomes, such as patients with obesity or other significant comorbidity. Only three packages indicate they are designed for patients with “mild to severe” or “moderate to severe” asthma, while the remaining packages do not explicitly address asthma severity.

Setting

AS-ME can be delivered in schools, patient homes, community sites, and healthcare facilities. The appropriate setting for each package depends on the intended audience and the location and role of the educator or facilitator. Most packages can be implemented in multiple types of settings; for example, You Can Control Asthma can be implemented in school, home, community, and healthcare settings. As noted above, A Breath of Life is intended for both community health educators and the subsequent education of parents in community settings. Six other packages were designed for various combinations of home, school, community, and healthcare environments. Finally, we identified two packages designed only for home use and two developed specifically for use in schools.

Language and Literacy

Language and literacy are important components of any program to improve patient self-management. All the packages we reviewed were designed in English; Spanish-language versions were available for 8 of 12 packages that include a patient-facing component (i.e., were not designed exclusively for professional training). We identified no package providing materials in any language other than English or Spanish. However, our KI interviews indicated that efforts are underway to produce AS-ME packages in additional languages, although details were not provided.

While identifying multilingual availability of the packages is easy, it is more challenging to determine if they are written at an appropriate literacy level for users. Asthma Care for Adults is described by the AAFA as “easy reading in plain language,” while Wee Breathers’ parent materials are written at a sixth-grade reading level. The parent materials for You Can Control Asthma are at a sixth-grade level as well, and the student component is written at a third-grade level. Other packages we reviewed did not self-identify literacy levels of potential users.

Table 3

Asthma self-management education packages: audience, patient population, setting, and language.

Delivery of Education

Nearly every package includes a potential face-to-face educational element. Packages intended for in-school use necessarily rely on in-person learning, but packages for parents or adult patients usually include in-person teaching as well. Three packages incorporate face-to-face teaching in community settings or the patient’s home. Two packages include a combination of in-person learning and scheduled phone calls between educators and patients. Two packages can be implemented through in-person education or self-directed learning without face-to-face interaction.

When learning is delivered in person to adult patients or parents, education is facilitated by a nurse, a respiratory therapist, or a nonclinical professional trained specifically in asthma education, such as a community health worker or other health educator. School-based programs are typically led by school nurses, or teachers who receive specialized training in health education. The packages are generally designed to be taught successfully by any of these categories of healthcare or educational professionals, and do not indicate specific limits on who can facilitate their use. Seven of the nine packages that include in-person teaching in school, home, community, or healthcare settings provide an instructor’s manual to guide facilitation.

The timeframe recommended for implementing in-person learning varies widely. School-based packages are designed to be delivered in four, five, or six sessions with each session lasting 40 to 60 minutes, depending on the package. Most in-person AS-ME packages for adult patients or parents range from four to seven sessions of approximately 1 hour each. Sessions can be scheduled on consecutive weeks or spaced out over a longer period of time, and packages are generally designed to be flexible and amenable to adaptation, to enable use in different settings with varying resources. The Breathe Well, Live Well package offers multiple alternatives, including one-day, two-day, three-day, and self-directed frameworks.

Interactivity and Technology

The reliance on in-person and phone-based teaching for most packages creates substantial opportunity for interactive learning including questions, feedback, and demonstrations of how to use devices such as inhalers and peak flow meters. School-based packages feature significant interactive opportunities such as games, skits, and role playing. Home-based packages lacking those elements provide patients or parents with tools or activities that expand the educational experience beyond a simple reading of didactic material. These tools or activities take numerous forms, such as self-evaluation activities that measure understanding of the material, structured assessments of the home environment to identify asthma triggers and reduce exposure, and asthma action plans and symptom logs that patients and families are encouraged to complete at home and share with their healthcare provider for review and discussion.

Few packages incorporate audiovisual elements, and only one includes a web-based component. All packages use paper-based materials, and five packages designed for patients or parents also include videos or audiovisual elements. We identified no apps meeting our inclusion criteria for packages, but several ongoing trials described in ClinicalTrials.gov examine apps or web-based educational interventions. Our KIs shared their experience that AS-ME developers and researchers have found, that patient engagement with asthma-oriented apps is difficult to sustain, with users frequently abandoning mobile-based interventions, while nonusers may have limited access to technology-based tools. Nevertheless, efforts to develop technology-based tools for asthma management remain an important focus of research and development.

Accessibility

Many AS-ME packages are readily available on the Internet for free, while access to several others include a fee and require the requestor to belong to or submit a formal request to the organization that developed the package. Nine of the packages we evaluated were freely available for downloading from the website of the sponsoring organization. These include the packages developed by the National Heart, Lung, and Blood Institute (NHLBI) (https://www.pathlms.com/aafa/courses/8092) or printed versions are provided at no cost for those who qualify, such as Federally Qualified Health Centers (FQHCs). For those who do not qualify, printed and bound editions can be purchased for $90. Of packages that we did not review, Asthma Education for the Community Health Care Worker, developed by the Association of Asthma Educators (AAE), can be ordered from the AAE after completion of a signed agreement and payment of $50 per manual, while Peak Performance USA, developed by the American Association for Respiratory Care, is described online as a free package, but we were unable to access the materials because a published URL link did not function properly and we could not identify any individuals who have direct knowledge of and access to the program.

Eleven packages are formally copyrighted, while one package is protected by a Creative Commons license. Several of these packages, though copyrighted, openly indicate that their materials can be reproduced with attribution. Additionally, our KIs indicated that they are aware of routine collaboration between several professional organizations to share AS-ME resources and avoid duplication of effort. However, developers generally expect that the content of their materials will not be altered, which may present challenges for organizations or end-users interested in modifying a package for a specific setting or population.

Table 4

Asthma self-management education packages: delivery and accessibility.

Educational Content

We evaluated each AS-ME package to identify the broad categories of educational content that comprise their curriculum. The broad areas we focused on were lung physiology, medication and device use, symptom management and asthma triggers. We found that content is generally homogenous across packages, with variations that primarily reflect differences in the intended audience and setting. Table 5 summarizes the content areas for each package.

Additional Curriculum Elements

Several packages address the cognitive, psychological, or emotional challenges associated with asthma and asthma self-management, which our KIs identified as critical for successful asthma care. The Asthma Workbook and Women Breathe Free emphasize individual goal setting to address asthma symptoms, triggers, and overall health, and provide tools and guided activities to promote goal-oriented self-care. Asthma Basics for Children and Breathe Well, Live Well discuss stress management, relaxation strategies, and behavioral approaches to improve well-being. You Can Control Asthma and A Breath of Life address children’s feelings about their asthma and strategies for managing those challenges.

We also evaluated whether AS-ME packages include scientifically valid and up-to-date content, and are feasible to implement. Most packages were developed or updated in recent years, including six packages from 2019 or 2018 and three packages introduced or revised between 2013 and 2015. Two packages date from 2010, one is from 2005, and we were unable to determine the timeframe for the remaining two packages. Five packages are explicitly based on and are consistent with current clinical practice guidelines. Our KIs emphasized packages require regular review to ensure their currency, especially when national clinical practice guidelines are updated, and revised periodically to include new therapeutic interventions. Controlled clinical trials evaluating five packages have been published in peer-reviewed journals. Finally, five of the packages report undergoing pilot testing to assess their feasibility in practice. Additional information about the evidence base addressing AS-ME effectiveness and feasibility is described under GQ 3.

A final and critical part of a complex educational curriculum is assessing whether participants have learned the material and implemented new asthma management strategies in response to that learning. The packages we reviewed measure their impact in a variety of ways. Five packages include a set of knowledge-based questions that are administered before and after completion of the program, or upon completion of individual units/chapters/sessions, to determine the extent to which information was understood and retained. In a variation on this approach, Open Airways for Schools uses verbal questions embedded throughout the curriculum to assess student learning. Two packages rely on patient self-testing and assessment to evaluate their progress. Two other packages do not assess knowledge but instead measure each patient’s asthma morbidity before and after the program to evaluate clinical improvement.

Recognition of accomplishment is also important for patients and their families. Seven packages provide a formal certificate upon completion of their curriculum. Two of these are school-based, two are home or community-based packages for parents, and three are home-based packages for adults with asthma.

Table 5

Asthma self-management education packages: curriculum.

Table 6

Asthma self-management education packages: content features.

Development and Dissemination

The packages we reviewed were developed and/or are disseminated by nonprofit associations, academic institutions, or the federal government. Two leading organizations in promoting asthma care—ALA and AAFA —accounted for 9 of the 14 packages. NEEF has two packages, including one in collaboration with the National Association for School Nurses. Two packages come from the University of Michigan, and the remaining package is a project of NHLBI. The packages that we could not acquire or review fit a similar pattern, coming from institutions such as the Association of Asthma Educators, the American Association for Respiratory Care, Vanderbilt University, and Rush University Medical Center. We did not identify any AS-ME packages developed by for-profit commercial interests.

We found little information about how AS-ME packages are developed when we reviewed the materials contained in each package and the websites of the organizations that developed or promote them. Two packages disseminated by ALA and one package promoted by AAFA were initially designed and tested by independent groups of clinicians and researchers, whose work was later adopted and branded by those organizations. Other packages appear to have been developed in-house by the groups that currently disseminate them, but details are generally scarce. Several packages acknowledge individuals involved in their development but lack discussion about how they conducted their work. A few packages briefly describe field testing and review by clinical experts but do not provide additional context. Some packages do not include any details about the processes used in their development.

Based on their experiences, our KIs also provided insight, into some of the roles professional organizations serve in the development of AS-ME packages. For example, clinicians and other asthma educators often contact content developers to request additional content or tools that address challenges that may be specific to a patient population or a geographic region, and this can lead to development of new materials. Developers also partner directly with organizations representing specific populations, such as African-American or Hispanic patients, to tailor AS-ME packages to the needs of those communities. One recent effort has focused on collaboration with faith-based organizations to better reach their constituents. However, some developers do not have a direct relationship with patients and rely instead on providers and other stakeholders to inform their work and help shape their AS-ME efforts.

Costs and Resources

Data on the cost or resources associated with developing, producing, or disseminating AS-ME packages are also lacking. We found no publicly available information about such factors, and we identified no studies of specific packages that addressed the costs of development or implementation. Our KIs, including representatives from organizations that develop or promote AS-ME packages, did not address issues of cost or other resources.

Reporting of external grant funding is the one important exception to the paucity of information on resource use and cost. Nine of 14 packages report funding support from CDC, while one package was developed and funded by NHLBI. Three packages that received CDC funding also received funding from other Federal agencies, State health departments, and/or foundations. The packages do not disclose the amount of support received or how those resources were used.

Training

As nearly all packages we reviewed were designed to include in-person teaching, we examined how facilitators might be recruited, selected, trained, and evaluated.

For three packages disseminated by the ALA, the organization provides online training courses for nurses, teachers, and others who intend to administer their packages. Trainees are self-selected and complete training at their own pace. When training is complete, instruction manuals are available to guide their work. We could not determine if ALA evaluates or reviews the performance of asthma educators in the field, or if any mechanism for communicating updated materials or providing periodic retraining exists.

AAFA also provides training in asthma education, with programs that are open broadly to interested participants and not linked directly to specific AS-ME packages. However, AAFA packages include extensive training manuals, and advise program planners to enlist support from teachers, school nurses, respiratory therapists, community health workers, or others who are or could become proficient in facilitating asthma education.

Aside from ALA and AAFA, we were unable to gain substantial insight into educator training. NHLBI’s A Breath of Life is designed to prepare promotoras who then educate families in the community. The package offers extensive information on the curriculum provided to the promotoras, but we could not identify who actually administers their training. Similarly, the other packages refer generally to asthma educators, nurse educators, or peers as responsible for administering the respective packages, but additional details were not available and we did not identify any instructor manuals for those packages.

AAE offers numerous online training courses for professionals involved with asthma education. Some courses address broad themes in asthma care while others focus on specific interventions, skills, or patient populations. Most courses offer continuing medical education credits and involve a fee, although some resources are available free to AAE members. These programs are not tailored to specific AS-ME packages, but they are likely to provide knowledge and skills that could prepare asthma educators to implement AS-ME interventions.

Our KIs suggested that many types of health professionals, including (but not limited to) nurses, respiratory therapists, and community health workers, can facilitate AS-ME with appropriate training. However, they cautioned that educators are most effective when trained in the specific skills and tools included in a given package (such as a particular technique for inhaler use or a patient self-assessment instrument) and that skills and tools may vary by package. They also acknowledged that little funding is available for AS-ME training.

Adaptability

One of the most important aspects of AS-ME implementation is the frequent need to adapt a program to a local setting, specific population, or even an individual patient. AS-ME packages often include a broad and complex set of elements, including lesson plans, assessment instruments, patient and parent handouts, and supplemental audiovisual material. When a clinician, asthma educator, or school nurse implements a package, they may consider whether every facet of the curriculum or each supporting tool useful for their target audience. Since patients, settings, and resources vary widely, it is common for local sites to modify a branded program to better suit the patients they serve.

Adaptation may be minor (such as omitting part of a lesson that is less relevant for a certain population or replacing a given handout with another from a different source) or a major departure in which substantive components of several different packages are combined with local resources to form a new set of materials. Many providers have developed homegrown packages that may build on or mirror valuable elements of existing packages, but include new elements or creative approaches to implementation. Our KIs emphasized that flexibility of AS-ME materials is vitally important to clinicians and asthma educators. Packages containing elements that can be used independently and do not require a fixed, step-by-step approach to complete, offer greater opportunities for users to adapt them as needed.

Our review of the published literature, described below in response to GQ 3, identified several studies that examined modified versions of popular branded packages. Unfortunately, it was difficult to determine—from our analysis of existing packages, our review of the literature, or our KI discussions—how frequently AS-ME packages are modified in practice, or whether similarities or patterns in how packages are adapted by different users exist.

Additional Barriers to Implementation

In addition to emphasizing the importance of adaptability, our KIs identified several other potential challenges to successful AS-ME implementation. First, patient beliefs and values sometimes conflict with recommended practices. For example, some patients have misconceptions about asthma medications, or prefer alternative treatments that are not evidence based. Clinicians and educators must be able to recognize these concerns, and need strategies and tools that foster productive conversations with patients. A second challenge stems from the need for patients to navigate across many different settings on a daily basis, from home to work, from school to playground. Optimal self-management requires awareness of how different places or activities can affect asthma, and how to adapt. Education should address these challenges directly and offer clear strategies that can be remembered and internalized. Finally, patients with asthma face a major challenge that is all too common across healthcare: disjointed coordination and communication among providers, patients, families, teachers, coaches, and other caregivers. AS-ME packages should strive to include curriculum and strategies that facilitate communication and coordination among the many professional and personal stakeholders that are crucial to patients with asthma.

Table 7

Asthma self-management education packages: sponsorship, development, funding, and training.

Specific AS-ME Packages

In GQs 1 and 2 we evaluated 14 AS-ME packages. Four of those packages were examined in eight primary studies identified in our searches: Asthma 101, Asthma Basics for Children, Kickin’ Asthma, and Open Airways for Schools. We identified no studies assessing the other nine packages.

In addition to these 8 studies, we identified 10 primary studies that examined 9 other packages with unique names or brands. We also included 15 primary studies of homegrown AS-ME packages that were developed for use in a local community or clinical setting, but not sponsored or disseminated by a national organization or branded in some way. Table 8 lists the packages included in the primary studies and Table 9 highlights key findings for each package.

Table 8

Asthma Self-Management Education Packages in Primary Studies.

Setting

Nearly half the primary studies (17 of 33) examined packages implemented in schools, while 6 studies^{18,27,36,38,39,41} took place in hospitals, and 6^{28,30,31,34,35,37} in community settings. Only 3 studies^22,29,33 evaluated AS-ME initiatives in a patient’s home, and the remaining study⁹ used Asthma 101 as a training module for nursing students.

Similarly, the systematic reviews consisted mainly of school-based primary studies. Three reviews^42–44 focused exclusively on school-based interventions, while one⁴⁵ examined AS-ME conducted by school nurses or community-based nurses. Another review⁸ evaluated peer-led programs in schools or camps, and one⁴⁶ assessed programs implemented in school, community, and healthcare settings. Finally, one review⁷ examined interventions designed to train healthcare professionals to provide AS-ME. Figure 4 summarizes study setting according to study design.

This evidence base indicates strong interest in school settings and a paucity of studies of home-based interventions. Notably, this diverges from the packages we summarized in GQs 1 and 2, where home-based interventions were more common than any other setting.

Figure 4

Setting of published studies.

Population

Given the predominance of school-based interventions, it is not surprising that 24^{10–17,19–26,32–34,36,38–41} of 33 primary studies evaluated children or adolescents, while only 8^{18,27–31,35,37} focused on adults with asthma. Additionally, all 7 systematic reviews focused on children or adolescents. Figure 5 summarizes the age distribution of included studies by study design. All primary studies we evaluated were conducted in the United States, per our inclusion criteria. Every systematic review included both U.S.- and non-U.S.-based studies.

Most primary studies focused on communities with large minority populations and indicators of low socioeconomic status. Twenty-one studies (12 RCTs^{13–15,17,19,20,23–27,32} and 9 observational studies^{10,18,21,22,33,34,36,38,39}) were conducted in populations comprising more than 50 percent Black (including African-American, Caribbean, and/or African), and/or Hispanic or mixed race/ethnicity patients. Five other studies did not describe patient race or ethnicity.^{11,16,28,35,41} Seven RCTs^{13–15,17,20,23,24} and seven observational studies^{16,21,22,33,34,38,39} primarily enrolled patients likely living close to the poverty line, as indicated by income, insurance coverage, or eligibility for public programs. However, almost none of the remaining studies reported data addressing socioeconomic status.

Asthma severity was reported in about half of primary studies.^{13–15,17,19,24–27,29,30,33,34,39,40} Patients in those studies were more likely to have mild or moderate asthma, while severe asthma was generally less common. Few studies reported on other health measures such as patient comorbidity or body mass index.

Figure 5

Population of published studies.

Outcomes

Important asthma outcomes include asthma control, symptom frequency, emergency department (ED) visits, hospitalizations, and medication use. We found that studies examined a variety of these key outcomes as described below. Figure 6 summarizes the outcomes reported across studies. Table 9 shows how outcomes were distributed across studies of specific AS-ME packages.

Two systematic reviews performed meta-analysis,^8,42 while the remainder synthesized studies narratively. Most reviews did not synthesize the key characteristics of interventions used in the individual studies. One review,⁴⁶ however, identified eight factors associated with successful approaches, including structured curricula, reinforcement, active participation, collaboration, autonomy, feedback, multiple exposure, and problem solving.

We did not assess study quality for individual primary studies per our protocol and the standard procedures for Technical Briefs, but we note that six of seven systematic reviews^{7,8,42,44–46} assessed study quality using standardized evaluation tools and found that most primary studies were at high or unclear risk of bias.

AS-ME Packages Evaluated In GQs 1 and 2

Four studies (three RCTs^13–15 and one cohort study¹⁶) evaluated Open Airways for Schools. Three studies identified improvement in asthma control,¹³ symptom frequency,¹⁵ QoL,¹³ or asthma knowledge,¹⁶ while one study¹⁴ reported no difference in asthma control or QoL. Kickin’ Asthma was assessed in one pre-post¹¹ and one cohort¹² study. One study¹¹ found the intervention was associated with significantly reduced risk for ED visits, asthma symptoms, and school absences; the other study¹² reported that patients who completed the program used peak flow meters and spacers more frequently but there was no change in use of rescue medications or avoidance of asthma triggers. A pre-post study¹⁰ found that Asthma Basics for Children was associated with fewer ED visits, hospitalizations, symptoms, and daycare absences, and increased parent knowledge. A pre-post study⁹ using Asthma 101 to train nursing students found that the package was effective at improving students’ knowledge.

Figure 6

Outcomes reported by included studies.

Table 9

Summary of primary study outcomes by AS-ME package.

Evidence Gaps and Challenges (Guiding Question 4)

Table 10 highlights areas where current and future AS-ME packages could better serve patient needs, and identifies knowledge gaps that could be addressed by further research.

Table 10

Future needs in AS-ME development, implementation, and research.