Minority HAE patients experience barriers to care, study suggests
Results cover underrepresented racial and ethnic groups in the United States
People from underrepresented racial and ethnic groups who have hereditary angioedema (HAE) continue facing barriers to diagnosis and effective care, according to a recent study.
These patients reported having trouble getting adequate care before their diagnosis, and though most were satisfied with the treatment they received afterward, many continued having regular swelling attacks. Out-of-pocket costs for treatment also posed challenges for many study participants.
“Increased awareness and education among HCPs [healthcare professionals] to facilitate delivery of ‘culturally competent’ care might improve experiences for patients with HAE from minority racial and/or ethnic groups,” the researchers wrote.
The study, “Hereditary angioedema: Patient health care experiences within underrepresented racial and ethnic groups in the United States,” was published in Annals of Allergy, Asthma & Immunology. It was sponsored by Takeda Pharmaceuticals, a company that markets several approved therapies for HAE.
The study and its findings
Angioedema is characterized by swelling attacks in the deep layers of the skin or mucus membranes. In HAE, these symptoms are linked to genetic mutations.
Previous studies have found that HAE rates are similar among people from a range of races and ethnicities. In clinical trials of HAE therapies, however, white and Asian patients have been overrepresented while people from other racial and ethnic groups have been underrepresented, according to researchers.
“This study aimed to explore the experiences and perspectives of underrepresented racial and ethnic groups in the United States regarding the medical care and treatment of HAE,” the researchers wrote.
To this end, they surveyed 139 people with HAE who did not self-identify as white. All study participants were part of the Takeda Patient Support Program, a service offered to people who are prescribed products marketed by Takeda.
From the 139 patients who were eligible to participate in the study, 133 (95.7%) completed the entire survey.
Most participants identified solely as “African American or Black” (33.1%) or “Hispanic, Latin American, or Latine, or Latinx” (30.2%). They had a mean age of 43.2 years, and the majority (82%) were female.
Before being diagnosed with HAE, about half of the participants were dissatisfied with the care they were receiving for their symptoms. Among those who did not receive the care they wanted before diagnosis, 91.5% said their health care providers lacked knowledge or awareness of HAE, and 2.8% reported their race or ethnicity was a barrier to receiving care.
Most patients (87.9%) said that before they were diagnosed, they experienced HAE attacks that they did not seek care for or did not remember seeking care for. Within this group, 36.2% said that previous healthcare providers did not take their concerns seriously.
A mean of 8.2 years passed between the first time participants sought medical care for an attack and the time they received their diagnosis.
“The findings from this study of patients from underrepresented racial and ethnic groups suggest that the road to HAE diagnosis remains long and difficult, with health care diagnostic experiences negatively affecting patients’ lives,” the researchers wrote.
After diagnosis, more than 90% of participants indicated they were satisfied with their HAE care and involved in making treatment decisions. While most (86.5%) rated symptom control as being good or excellent with their current medication, participants had a median of six HAE attacks in the past year, indicating ongoing struggles with symptoms.
Additionally, 38.1% of patients reported financial difficulty covering the out-of-pocket costs of HAE treatment.
The researchers noted that without data from white patients for comparison, limited conclusions could be drawn. Previous studies have found that other populations also experience difficulty obtaining accurate diagnoses and care.
However, given data on racial and ethnic health disparities in the U.S., researchers hypothesized that “underrepresented racial/ethnic groups may be at an increased risk of morbidity and mortality compared with their White counterparts, as found during the COVID-19 pandemic.”
Particularly given racial and ethnic underrepresentation in clinical trials, gathering information about experiences within these groups is a first step toward identifying disparities in HAE management, they noted.
“As HAE awareness increases, it is hoped that patients will be diagnosed earlier and will become more involved in managing their condition, ultimately reducing the burden of HAE on patients and caregivers,” the researchers wrote.
About the Author
