Black Emerging Adults With Uncontrolled Asthma: A Qualitative Study.

RATIONALE: Asthma morbidity and mortality are disproportionately high in the Black population, especially among Black emerging adults (BEAs) (age 18-30 years). Few studies have been done to identify unique challenges to asthma care in BEAs. OBJECTIVE: To assess the challenges and barriers to asthma care BEAs experience. METHODS: We conducted virtual focus groups consisting of BEAs (n = 16) with a physician diagnosis of asthma. Discussion questions regarding asthma triggers, management, and challenges were used. Focus group discussions were recorded and transcribed verbatim. The transcripts were then coded by 3 coders using a thematic saturation approach. RESULTS: Seven major domains were identified: heightened anxiety around asthma management; asthma symptoms interfering with school and/or work; asthma in social group setting; transitioning to adulthood leading to increased autonomy and financial independence; use of technology in asthma management; concerns regarding coronavirus disease 2019; and perceived discrimination and biases. These domains create complex barriers to optimal asthma management and overlapping elements were identified. Technology was described as a potential method to address these challenges. CONCLUSIONS: BEAs with asthma have unique challenges due to age and race. Physicians should address these challenges through innovative means such as technology-based interventions.

Hereditary angioedema in older adults: Understanding the patient perspective.

BACKGROUND: Hereditary angioedema (HAE) is a rare condition characterized by potentially fatal, recurrent episodes of painful swelling. Whereas there are limited studies evaluating the quality of life of individuals with HAE, none have evaluated the impact of HAE on older adults. OBJECTIVE: To evaluate the effect of HAE on older adults through qualitative methodology. METHODS: A group of 3 physicians with extensive research and clinical experience in HAE developed a focus group guidebook highlighting issues of importance to older adults. A total of 17 patients with HAE (type I or II) aged 60 years and older participated in focus groups. Three independent reviewers coded each focus group transcript using a thematic saturation approach. RESULTS: Reviewers identified 7 core themes from the focus groups. The themes identified encompassed the following: (1) challenges with securing medications and insurance concerns; (2) the experience of living with HAE before the advent of newer and more effective therapeutic options; (3) a worsening of HAE attack frequency and severity with aging; (4) the effects of comorbid conditions such as arthritis, memory loss, and irritable bowel syndrome; (5) changes in HAE with menopause; and (6) changing perspective on HAE with age, the effect of HAE on interpersonal relationships including the decision to have children, and goals for future care and research including support groups and a desire to be included in clinical trials. CONCLUSION: Older adults with HAE have specific challenges and concerns that may be unique compared with younger populations. Health care providers should address these to provide optimal care.

Consequences of Insurance Coverage Delays and Denials for Patients With Hereditary Angioedema.

BACKGROUND: Hereditary angioedema (HAE) is a rare and potentially fatal genetic disease associated with recurrent and unpredictable episodes of angioedema. Although modern therapies have dramatically increased quality of life, insurance changes, delays, and denials are becoming more common. OBJECTIVE: To examine the impact of insurance delays and denials on patient health and well-being. METHODS: A total of 20 patients with HAE (type 1 and 2) who recently experienced insurance delays or denials completed an online survey, and 19 participated in a follow-up focus group. The survey and focus group addressed the impact of insurance challenges on the use of health care services, work/school attendance, and anxiety. Three independent reviewers coded each focus group transcript using a thematic saturation approach. RESULTS: A total of 70% of participants reported an increased frequency of angioedema attacks resulting from insurance delays or denials. More than 50% missed work/school days because of increased attacks, and 90% reported greater anxiety. Twenty-five percent of respondents reported more urgent care or emergency department visits. In focus groups, participants identified specific ways that losing access to medication had a negative impact on their health, family, and work/school life. Insufficient notification of health insurance policy changes and the time and effort required to regain access to medications compounded patients' frustration and anxiety. CONCLUSION: Insurance delays and denials have significant impacts on individuals with HAE including (1) increased urgent care and emergency department visits, (2) missed work/school days, (3) higher levels of anxiety, and (4) a negative impact on family life.

An Electronic Shared Decision-Making App to Improve Asthma Outcomes: A Randomized Controlled Trial.

BACKGROUND: Shared decision-making (SDM) incorporates patient values and preferences to optimize asthma management decisions. Available asthma SDM aids primarily focus on medication selection. OBJECTIVE: To assess the usability, acceptability, and preliminary effectiveness of an electronic SDM application, the ACTION (Active Conversation in asthma Treatment shared decisION-making) app, that addressed medication, nonmedication, and COVID-19 concerns for asthma. METHODS: In this pilot study, 81 participants with asthma were randomized into the control arm or ACTION app intervention. The ACTION app was completed 1 week before a clinic visit, and responses were shared with the medical provider. The primary outcomes were patient satisfaction and SDM quality. Next, ACTION app users (n = 9) and providers (n = 5) provided feedback through separate virtual focus groups. Sessions were coded by comparative analysis. RESULTS: The ACTION app group scored higher agreement that providers adequately addressed COVID-19 concerns compared with the control group (4.4 vs 3.7, P = .03). Although the ACTION app group had a higher total 9-item Shared Decision-Making Questionnaire score, this did not reach statistical significance (87.1 vs 83.3, P = .2). However, the ACTION app group demonstrated stronger agreement that their physician knew exactly how they wanted to be involved in decision-making (4.3 vs 3.8, P = .05), providers asked about preferences (4.3 vs 3.8, P = .05), and that different options were thoroughly weighed (4.3 vs 3.8, P = .03). Major focus group themes included that the ACTION app was practical and established a patient-centered agenda. CONCLUSION: An electronic asthma SDM app that incorporates patient preferences regarding nonmedication-related, medication-related, and COVID-19-related concerns is well accepted and can improve patient satisfaction and SDM.

Program Implementation Approaches to Build and Sustain Health Care Coordination for Type 2 Diabetes.

BACKGROUND: As more people enter the U.S. health care system under the Affordable Care Act (ACA), it is increasingly critical to deliver coordinated, high-quality health care. The ACA supports implementation and sustainability of efficient health care models, given expected limits in available resources. This article highlights implementation strategies to build and sustain care coordination, particularly ones consistent with and reinforced by the ACA. It focuses on disease self-management programs to improve the health of patients with type 2 diabetes, exemplified by grantees of the Alliance to Reduce Disparities in Diabetes. METHOD: We conducted interviews with grantee program representatives throughout their 5-year programs and conducted a qualitative framework analysis of data to identify key themes related to care coordination. RESULTS: The most promising care coordination strategies that grantee programs described included establishing clinic-community collaborations, embedding community health workers within care management teams, and sharing electronic data. Establishing provider buy-in was crucial for these strategies to be effective. DISCUSSION: This article adds new insights into strategies promoting effective care coordination. The strategies that grantees implemented throughout the program align with ACA requirements, underscoring their relevance to the changing U.S. health care environment and the likelihood of further support for program sustainability.

Impact of Goal Setting and Goal Attainment Methods on Asthma Outcomes.

Optimal use of goal-setting strategies in self-management efforts with high-risk individuals with asthma is not well understood. This study aimed to describe factors associated with goal attainment in an asthma self-management intervention for African American women with asthma and determine whether goal attainment methods proved beneficial to goal achievement and improved asthma outcomes. Data came from 212 African American women in the intervention arm of a randomized clinical trial evaluating a telephone-based asthma self-management program. Telephone interview data were collected to assess goals and goal attainment methods identified, asthma symptoms, asthma control, and asthma-related quality of life at baseline and 2-year follow-up. Generalized estimating equations were used to assess the long-term impact of goal setting and goal attainment methods on outcomes. The average age of the sample was 42.1 years ( SD = 14.8). Factors associated with goal attainment included higher education ( p < .01) and fewer depressive symptoms ( p < .01). Using a goal attainment method also resulted in more goals being achieved over the course of the intervention (Estimate [ SE] = 1.25 [0.18]; p < .001) when adjusted for clinical and demographic factors. Use of and types of goal attainment methods and goals were not found to significantly affect asthma control, quality of life, or frequency of nighttime asthma symptoms at follow-up. Using a method to achieve goals led to greater goal attainment. Goal attainment alone did not translate into improved asthma outcomes in our study sample. Further studies are warranted to assess the challenges of self-management in chronic disease patients with complex health needs and how goal setting and goal attainment methods can be strategically integrated into self-management efforts to improve health endpoints.

A randomized clinical trial of a culturally responsive intervention for African American women with asthma.

BACKGROUND: Few interventions have focused on the difficulties that African American women face when managing asthma. OBJECTIVE: To evaluate a telephone-based self-regulation intervention that emphasized African American women's management of asthma in a series of 6 sessions. METHODS: A total of 422 African American women with persistent asthma were randomly assigned to either an intervention or control group receiving usual care. Behavioral factors, symptoms and asthma control, asthma-related quality of life, and health care use at baseline and 2 years after baseline were assessed. Generalized estimating equations were used to assess the long-term effect of the intervention on outcomes. RESULTS: Compared with the control group, those who completed the full intervention (6 sessions) had significant gains in self-regulation of their asthma (B estimate, 0.73; 95% CI, 0.17-1.30; P < .01), noticing changes to their asthma during their menstrual cycle (B estimate, 1.42; 95% CI, 0.69-2.15; P < .001), and when having premenstrual syndrome (B estimate, 1.70; 95% CI, 0.67-2.72; P < .001). They also had significant reductions in daytime symptoms (B estimate, -0.15; 95% CI, -0.27 to -0.03; P < .01), asthma-related hospitalization (B estimate, 0.51; 95% CI, 0.00-1.02; P < .05), and improved asthma control (B estimate, 1.34; 95% CI, 0.57-2.12; P < .001). However, neither grouped changed over time in outcomes. CONCLUSION: Despite high comorbidity, African American women who completed a culturally responsive self-management program had improvements in asthma outcomes compared with the control group. Future work should address significant comorbidities and psychosocial issues alongside asthma management to improve asthma outcomes in the long term. TRIAL REGISTRATION: clinicaltrials.gov Identifier NCT01117805.

Alliance system and policy change: necessary ingredients for improvement in diabetes care and reduction of disparities.

Reducing diabetes inequities requires system and policy changes based on real-life experiences of vulnerable individuals living with the condition. While introducing innovative interventions for African American, Native American, and Latino low-income people, the five community-based sites of the Alliance to Reduce Disparities in Diabetes recognized that policy changes were essential to sustain their efforts. Data regarding change efforts were collected from site leaders and examined against documents provided routinely to the National Program Office at the University of Michigan. A policy expert refined the original lists to include only confirmed policy changes, scope of change (organizational to national), and stage of accomplishment (1, beginning; 2, adoption; 3, implementation; and 4, full maintenance). Changes were again verified through site visits and telephone interviews. In 3 years, Alliance teams achieved 53 system and policy change accomplishments. Efforts were implemented at the organizational (33), citywide (13), state (5), and national (2) levels, and forces helping and hindering success were identified. Three types of changes were deemed especially significant for diabetes control: data sharing across care-providing organizations, embedding community health workers into the clinical care team, and linking clinic services with community assets and resources in support of self-management.

Engaging faith-based resources to initiate and support diabetes self-management among African Americans: a collaboration of informal and formal systems of care.

Diabetes for Life (DFL), a project of Memphis Healthy Churches (MHC) and Common Table Health Alliance (CTHA; formerly Healthy Memphis Common Table [HMCT]), is a self-management program aimed at reducing health disparities among African Americans with type 2 Diabetes Mellitus in Memphis and Shelby County, Tennessee. This program is one of five national projects that constitute The Alliance to Reduce Disparities in Diabetes, a 5-year grant-funded initiative of The Merck Foundation. Our purpose is to describe the faith-based strategies supporting DFL made possible by linking with an established informal health system, MHC, created by Baptist Memorial Health Care. The MHC network engaged volunteer Church Health Representatives as educators and recruiters for DFL. The components of the DFL project and the effect on chronic disease management for the participants will be described. The stages of DFL recruitment and implementation from an open-access to a closed model involving six primary care practices created a formal health system. The involvement of CTHA, a regional health collaborative, created the opportunity for DFL to expand the pool of health care providers and then recognize the core of providers most engaged with DFL patients. This collaboration between MHC and HMCT led to the organization of the formal health network.

Beyond co-pays and out-of-pocket costs: perceptions of health-related financial burden in managing asthma among African American women.

OBJECTIVE: The purpose of this study was to define perceptions of health-related financial burden based on the views of individuals who report these perceptions through qualitative approaches. METHODS: Four focus groups were conducted in Southeast Michigan with 26 African American women with asthma, recruited based on maximum variation sampling procedures. A semi-structured interview was employed by facilitators. Coded transcripts were analyzed for themes regarding dimensions of the meaning of financial burden. RESULTS: Major domains of financial burden identified included (1) high out-of-pocket expenses; (2) lost wages from exacerbations, inability to maintain a stable job and stress from making decisions about taking a sick day or coming to work; (3) transport costs; (4) both costs and stress of managing insurance eligibility and correcting erroneous bills. CONCLUSION: Greater awareness of factors that add to perceptions of financial burden might better equip researchers to develop interventions to help care teams manage such concerns with their patients.

Young, African American adults with asthma: what matters to them?

BACKGROUND: Asthma is a common chronic condition that shows significant health disparities among minority populations. Little research has focused on the management needs and preferences of young African American adults with asthma, a population undergoing dramatic life changes as they transition from adolescence to adulthood. OBJECTIVE: To understand the experiences and perspectives of young African American adults managing their asthma. METHODS: Focus groups were conducted with African American adults (n = 34) 18 to 30 years old with a physician diagnosis of asthma. Focus group sessions were audiotaped, transcribed verbatim, and coded using constant comparative analysis. RESULTS: Six major domains were identified and some of the salient themes included changes in asthma management needs with the onset of adulthood, career limitations owing to asthma, childcare interference with asthma regimen adherence, and difficulties with medication cost owing to lapses in insurance coverage. Participants also reported feeling discouraged when interacting with physicians as it related to their asthma care; yet ageism and racism were not perceived. Despite poor medication regimen compliance, participants were overwhelmingly interested in participating in asthma self-management programs and had strong preferences that such programs be tailored specifically to young adults with special consideration of the cultural experience of young African Americans with asthma. CONCLUSION: Young African American adults have specific barriers to optimal asthma care and distinctive ideas for self-management programs. It is important for the asthma care provider to identify and address these population- and age-specific barriers to improve asthma outcomes and decrease health care disparities.

Self-management of multiple chronic conditions among African American women with asthma: a qualitative study.

OBJECTIVE: African American women are disproportionately burdened by asthma morbidity and mortality and may be more likely than asthma patients in general to have comorbid health conditions. This study sought to identify the self-management challenges faced by African American women with asthma and comorbidities, how they prioritize their conditions and behaviors perceived as beneficial across conditions. METHODS: In-depth interviews were conducted with 25 African-American women (mean age 52 years) with persistent asthma and at least one of the following: diabetes, heart disease or arthritis. Information was elicited on women's experiences managing asthma and concurrent health conditions. The constant-comparison analytic method was used to develop and apply a coding scheme to interview transcripts. Key themes and subthemes were identified. RESULTS: Participants reported an average of 5.7 comorbidities. Fewer than half of the sample considered asthma their main health problem; these perceptions were influenced by beliefs about the relative controllability, predictability and severity of their health conditions. Participants reported ways in which comorbidities affected asthma management, including that asthma sometimes took a "backseat" to conditions considered more troublesome or worrisome. Mood problems, sometimes attributed to pain or functional limitations resulting from comorbidities, reduced motivation for self-management. Women described how asthma affected comorbidity management; e.g. by impeding recommended exercise. Some self-management recommendations, such as physical activity and weight control, were seen as beneficial across conditions. CONCLUSIONS: Multiple chronic conditions that include asthma may interact to complicate self-management of each condition. Additional clinical attention and self-management support may help to reduce multimorbidity-related challenges.

Study protocol for Women of Color and Asthma Control: a randomized controlled trial of an asthma-management intervention for African American women.

BACKGROUND: Among adults in the United States, asthma prevalence is disproportionately high among African American women; this group also experiences the highest levels of asthma-linked mortality and asthma-related health care utilization. Factors linked to biological sex (e.g., hormonal fluctuations), gender roles (e.g., exposure to certain triggers) and race (e.g., inadequate access to care) all contribute to the excess asthma burden in this group, and also shape the context within which African American women manage their condition. No prior interventions for improving asthma self-management have specifically targeted this vulnerable group of asthma patients. The current study aims to evaluate the efficacy of a culturally- and gender-relevant asthma-management intervention among African American women. METHODS/DESIGN: A randomized controlled trial will be used to compare a five-session asthma-management intervention with usual care. This intervention is delivered over the telephone by a trained health educator. Intervention content is informed by the principles of self-regulation for disease management, and all program activities and materials are designed to be responsive to the specific needs of African American women. We will recruit 420 female participants who self-identify as African American, and who have seen a clinician for persistent asthma in the last year. Half of these will receive the intervention. The primary outcomes, upon which the target sample size is based, are number of asthma-related emergency department visits and overnight hospitalizations in the last 12 months. We will also assess the effect of the intervention on asthma symptoms and asthma-related quality of life. Data will be collected via telephone survey and medical record review at baseline, and 12 and 24 months from baseline. DISCUSSION: We seek to decrease asthma-related health care utilization and improve asthma-related quality of life in African American women with asthma, by offering them a culturally- and gender-relevant program to enhance asthma management. The results of this study will provide important information about the feasibility and value of this program in helping to address persistent racial and gender disparities in asthma outcomes. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01117805.

Bringing evidence-based continuing education on asthma to nurses.

PURPOSE/OBJECTIVE: The objective of the study was to demonstrate how the clinical nurse specialist (CNS) in community health effectively responds to community need. RATIONALE/BACKGROUND: A needs assessment revealed high rates of asthma in the community and a request from nurses for more information on the care and management of persons with asthma. PROJECT/INTERVENTION: The intervention brings evidence-based continuing education on asthma to nurses using the Nurse Asthma Care Education program developed by the National Respiratory Training Center and the University of Michigan to increase nursing awareness of the National Asthma Education and Prevention Program Asthma Guidelines and encourage nursing leadership in asthma control activities. DESIGN: A quasi-experimental study examined the ability of the Nurse Asthma Care Education program to increase nurses' confidence and perception of using the guidelines. SAMPLE: Thirty-four nurses participated in a Nurse Asthma Care Education seminar. METHODS: A preintervention and postintervention survey was conducted. FINDINGS: Significant changes were noted in nurses' perceptions of the helpfulness of the National Asthma Education and Prevention Program Asthma Guidelines (P ≤ .001) and their confidence to use the guidelines (P ≤ .001) regardless of age with some variation by work setting and years of experience. CONCLUSIONS: Using CNSs to assess populations, including nursing populations, and train nurses, the largest number of frontline providers, may be an effective way to increase patient education and improve outcomes related to asthma and other chronic diseases. IMPLICATIONS FOR PRACTICE: The CNS can significantly impact community health by identifying and addressing the needs of those who provide care in the community.

Age-specific factors influencing asthma management by older adults.

Although many asthma patients experience their first attack after age 40, the experiences and concerns of older adults with asthma remain largely unknown. We conducted six focus groups, each consisting of participants over the age of 65 with a physician diagnosis of asthma. Semistructured questions regarding asthma education, symptoms, and management were used. A total of 46 adults participated in the six focus groups. The mean age of the participants was 72.6 years, and 43.5% were African American. The majority of participants had coexisting cardiac disease or hypertension. Major age-specific domains identified in all focus groups were atypical asthma symptoms, inability to distinguish asthma from other medical conditions, use of complementary and alternative therapies, desire for independence in asthma management, and a lack of participation in asthma education. Participants acknowledged that they did not commonly address these issues with their physicians or with family members. Optimal care will require physicians and researchers to explicitly address these issues unique to the geriatric asthmatic population.

Consideration of shared decision making in nursing: a review of clinicians' perceptions and interventions.

As the number of individuals with chronic illness increases so has the need for strategies to enable nurses to engage them effectively in daily management of their conditions. Shared decision making between patients and nurses is one approach frequently discussed in the literature. This paper reviews recent studies of shared decision making and the meaning of findings for the nurse-patient relationship. Patients likely to prefer to engage in shared decision making are younger and have higher levels of education. However, there is a lack of evidence for the effect of shared decision making on patient outcomes. Further, studies are needed to examine shared decision making when the patient is a child. Nurses are professionally suited to engage their patients fully in treatment plans. More evidence for how shared decision making affects outcomes and how nurses can successfully achieve such engagement is needed.

The continuing problem of asthma in very young children: a community-based participatory research project.

BACKGROUND: Asthma is a chronic health condition that has a disproportionate effect on low-income minority children who reside in large urban areas. African-American children report significantly higher rates than the general population of children and have more-severe asthma and poorer outcomes. This article describes the prevalence of asthma in a particularly vulnerable group: children aged 2-5 participating in Detroit Head Start programs. METHODS: Health screens were distributed to caretakers of all children attending 6 Head Start agencies. Caretakers of children identified with active asthma symptoms were asked to complete an in-depth phone interview regarding their child's asthma. RESULTS: Data collected from 3,254 children (78% African American) revealed that 27% met criteria for probable asthma. Of those with persistent symptoms, 26% were undiagnosed, and 21% were untreated. Baseline data (n = 675) showed that 95% had a regular doctor, but 36% had had no health care visit for asthma in the previous year. Of children with a history of asthma episodes, more than half reported 3 or more episodes in the preceding year. Forty-three percent of caretakers had discussed their child's asthma with Head Start, and 31% had an asthma action plan on file with Head Start. CONCLUSIONS: Asthma remains a significant problem in this population, especially for African Americans, as evidenced by high levels of undiagnosed children with persistent symptoms and questions regarding the care they receive. Head Start is a way to reach young children with asthma, but may need help to develop the capacity to assist families.

Working with a Head Start population with asthma: lessons learned.

The Early Childhood Asthma Project involved asthma case identification in 35 Head Start centers in Detroit, MI, and attempted implementation of an intervention designed to help families manage a child's asthma more effectively. Surveys were distributed to the parents of all Head Start children (3408), and 2198 complete surveys were returned. Case detection found probable asthma in 30% of the children whose parent returned a sufficiently complete survey. Implementation of the intervention was unsuccessful in this setting. Obstacles to effective implementation included the sample's low participation and high attrition, limited involvement of Head Start personnel, factors related to the program approach, and the target population's beliefs about asthma.