Having HAE takes toll on life quality, regardless of race, ethnicity
US study shows disease has similar impact across diverse patient groups
Written by |
For people with hereditary angioedema (HAE), regardless of a person’s racial or ethnic background, living with this chronic disease can take a toll on emotional well-being and cause difficulty engaging in day-to-day activities, a new study found.
The research specifically examined non-white patients, addressing a gap in earlier studies that largely focused on white populations. According to the scientists, the findings suggest that the physical and emotional impact of HAE is similar across racial backgrounds.
“The results of this study demonstrate that the key experiences and impacts of HAE among a racially diverse sample of patients are consistent with that of non-diverse (i.e., predominately or all White) HAE patient [groups] in previous studies,” the team wrote.
Overall, the researchers found that individuals with HAE “experienced impacts across multiple domains of [health-related quality of life], with the entire sample reporting impacts on their emotional functioning.”
An early-access version of the study, “The patient experience of hereditary angioedema: findings from a racially diverse sample of adult patients,” was published in the Orphanet Journal of Rare Diseases. The work was funded by Ionis Pharmaceuticals, which markets the approved HAE treatment Dawnzera (donidalorsen).
HAE is a genetic disorder, marked by bouts of swelling, for which there is no cure to date. In the U.S., the condition is reported to affect different racial and ethnic groups at roughly similar rates. Some data suggest that HAE is a bit less common among people of Hispanic origin, though this may be due to underrecognition of the disease.
Studies to date almost exclusively involved white patients
Living with the symptoms of HAE affects a person’s quality of life, and several studies have evaluated how the disease affects health-related life quality among patients.
However, these studies have almost exclusively assessed white patients. Because racial and ethnic background can have profound effects on a person’s experience of the world, this means researchers have little data on how HAE affects life for non-white patients.
To fully understand and evaluate the experience of HAE for all patients, it is imperative that the experiences of patients from diverse backgrounds, across racial and ethnic groups, are included in studies of this patient population.
Aiming to help fill this gap, a team led by scientists at Ionis conducted interviews with HAE patients, with a preference for participants who identified as non-white.
“To fully understand and evaluate the experience of HAE for all patients, it is imperative that the experiences of patients from diverse backgrounds, across racial and ethnic groups, are included in studies of this patient population,” the scientists wrote.
Altogether, the study involved 16 HAE patients: Four self-identified as white, while the rest identified with other backgrounds, primarily Black or Hispanic/Latino.
The frequency of swelling attacks in the six months prior to the interview ranged from one to 30. Many patients reported that their swelling attacks were often preceded by other symptoms such as fatigue, tingling, redness, or discomfort. The attacks themselves also often caused symptoms beyond just swelling, such as cramps, itching, or fatigue. Patients who experienced swelling in the abdomen also sometimes reported digestive complaints like nausea, vomiting, or diarrhea.
In the interviews, the patients noted that these swelling attacks can limit their quality of life in a range of ways — from hindering mobility to causing incapacitating pain.
“I’d rather have 20 babies at one time [than have an abdominal attack] … it’s an unbearable pain, the discomfort,” one patient said.
Some participants reported that certain triggers could set off a swelling attack. The most commonly noted trigger was stress; other less common triggers included food sensitivities, exertion, immune reactions, and injuries.
Overall, these experiences with swelling attacks are similar to what’s been reported in prior studies that enrolled mostly white patients, the researchers said.
“The HAE attacks described by participants, including symptoms, bodily locations of attacks, triggers, frequency, and severity, were similar to those of primarily [white] adults described in the literature,” the scientists wrote.
All patients say HAE affects emotional well-being
Broadly, all of the patients said that having HAE has affected their emotional well-being over the years, with all but one agreeing that the disease has also limited physical functionality and their ability to engage in day-to-day activities.
Most individuals reported that the disease caused them to take time off from school or work, and led them to miss out on chances to socialize.
Again, the researchers noted, these experiences with the disease are similar to what’s been previously reported in studies of white patients.
“These impacts [of HAE] on physical and social functioning have also been documented in the literature and appear to be consistent across samples of patients with HAE, regardless of racial background,” the scientists concluded.
Importantly, the researchers noted that, although this study sheds light on the experiences of non-white HAE patients, it remains limited to a small number of individuals living with the disease.
As such, “future research with larger samples could strengthen these findings,” the scientists wrote.
The team noted that fully understanding how the disease affects people of all backgrounds “supports the development of measurement strategies that are inclusive of patient experiences, including impacts on [quality of life], in diverse populations of patients with HAE.”
