HAE caregiving takes heavy emotional, personal toll: Multinational survey
Role can also significantly affect caregivers' professional lives
Written by |
Caring for children and adults with hereditary angioedema (HAE) places heavy demands on caregivers and can significantly affect their emotional well-being, work, and personal lives, according to a multinational survey conducted in Europe and South America.
“Results of this caregiver survey revealed that the caregiver role in HAE is time-demanding and adversely impacts various aspects of the caregiver’s life, particularly their emotional [well-being],” researchers wrote.
Survey details were described in the study, “Burden of hereditary angioedema: results from a multinational survey of caregivers for adult and pediatric patients,” published in the Orphanet Journal of Rare Diseases.
Many HAE patients rely on family members for caregiving
HAE is a rare genetic condition characterized by recurrent episodes of swelling in the deeper layers of the skin or the mucus membranes. Typically starting before the age of 20, such attacks mainly affect the hands, feet, face, abdomen, and genitals.
Many people with HAE rely on informal caregivers — most often family members — who help manage medical care, provide emotional support, assist with daily tasks, and guide treatment decisions.
While the effects of HAE on patients’ quality of life have been well documented, information about its impact on caregivers is limited.
To address this gap, researchers conducted a web-based survey of caregivers of adults and children with HAE living in 10 countries in Europe (Croatia, Denmark, Germany, Hungary, Ireland, Norway, Poland, Portugal, Romania, and Sweden) and three countries in South America (Argentina, Brazil, and Colombia).
“Improved understanding of the impact of HAE on caregivers’ lives would help to inform disease management, as would information on the disease burden experienced by those patients outside [Western] Europe and North America,” the team wrote.
Nearly half of those caring for children also had the disease themselves
The pediatric survey included 54 caregivers of 55 children with HAE, nearly half of whom (46.3%) also had HAE themselves. Almost all caregivers (80%) reported regularly spending time with their child, managing medical appointments, and providing emotional support.
In the four weeks before the survey, caregivers missed a mean of 2.6 workdays, while children missed a mean of 3.9 school days. Caregivers reported providing care for a mean of 23.5 days per month.
Many caregivers said others did not fully understand their efforts. A lack of understanding was reported from schools (20.4%), employers or coworkers (16.7%), family members (13.0%), friends (13.0%), and partners or spouses (13.0%).
Care responsibilities also affected caregivers’ personal lives. One-third (33.3%) said caregiving limited their ability to work full-time, while about one in four said it affected career advancement (25.9%), hobbies or personal interests (25.9%), and travel or holidays (24.1%). About one in 10 (9.3%) said caregiving limited their ability to relocate.
In addition, up to 30% of caregivers reported strain on relationships with family or partners, and more than one-tenth (11.1%) cited divorce or separation as a direct or indirect result of the caregiving role. Most caregivers also shared serious emotional concerns, especially worries about their child’s health and future.
Health impacts on caregivers were also common. Nearly three-quarters (74.1%) reported having their own health conditions or symptoms, including sleep problems (24.1%), migraines (22.2%), gastrointestinal symptoms (22.2%), and anxiety (20.4%). In the previous four weeks, one-third (35.2%) reported feeling sadness some, most, or all of the time, while half (48.1%) reported ongoing stress or worry, and one-third (35.2%) said they had little or no time for themselves while caregiving.
Many caregivers worry about health, future of HAE patient
Of the 260 adults with HAE who completed the patient survey, about half (46.2%) reported having a caregiver. Those caregivers had been providing care for a mean of 15 years and were helping for a mean of 14.4 days per month.
About half of adult patients showed moderate to severe impairment in quality of life, as measured by the Angioedema Quality of Life Questionnaire, and nearly three-quarters (74.5%) reported poor disease control on the Angioedema Control Test.
The impact extended into the workplace. Over the previous seven days, patients reported missed work time (13.4%), reduced work performance (28.8%), overall work productivity loss (31.0%), and impairment in regular daily activities (33.4%). Overall, about one-third of patients’ time in the previous week was negatively impacted by HAE.
The role of being a caregiver to a patient with HAE is highly time-demanding and adversely impacts various facets of a caregiver’s life and, in particular, their emotional [well-being], with a large proportion of caregivers reporting worry about the future.
During the most recent swelling attack, caregivers most often provided emotional support (72.7%) and spent time with the patient (68.2%). About half helped with medication (51.5%) and household chores (48.5%). Work-related effects on caregivers included missed workdays (24.2%), reduced working hours (7.6%), and lowered career expectations (3.0%). In the four weeks before the survey, caregivers missed a mean of 0.94 workdays due to caregiving.
Caregivers also said their responsibilities limited long-term life planning, including travel, hobbies, full-time work, relocation, and having children. Emotional strain — especially worry about the patient’s health and future — was a recurring theme.
Finally, about half (51.5%) of caregivers reported having their own health conditions, including anxiety, migraines, and sleep problems. In the previous four weeks, almost a third (30.3%) felt sadness some, most, or all of the time, while others (33.3%) felt stress or worry, and a fsmaller percentage (15.2%) said they had little or no time to themselves while caring for an adult with HAE.
“The role of being a caregiver to a patient with HAE is highly time-demanding and adversely impacts various facets of a caregiver’s life and, in particular, their emotional [well-being], with a large proportion of caregivers reporting worry about the future,” the researchers concluded. “Other potential challenges faced by the caregiver include restrictions on social activities, personal relationships, and employment, as well as an impact on their own health.”
