Pediatric patients with hereditary angioedema (HAE) and their caregivers experienced significant improvements in quality of life after starting long-term prophylaxis with lanadelumab, according to data presented at the American College of Allergy, Asthma and Immunology 2026 Annual Scientific Meeting.
Research findings shared by William R. Lumry indicated that caregiver-perceived quality of life for patients rose from a mean of 2.2 to 4.7 on a 5-point scale.
The study, which tracked 13 pediatric patients with a mean age of 12.2 years, highlighted a shift in the daily burden of HAE. Before initiating lanadelumab, caregivers reported that only 23% of them experienced no impact on their work, while 8% reported no impact on daily activities.
During the treatment period, these figures climbed to 69% for both categories, HCPLive reported.
“The study provides a really great multidimensional assessment of the broader impact of this very effective treatment in pediatric patients and in their caregivers,” Lumry told HCPLive.
Beyond work and daily activities, the data revealed a reduction in the emotional and logistical strain placed on families. Before treatment, 85% of caregivers reported impaired sleep, a figure that dropped to 31% during the treatment period. Similarly, the reported impact on recreational activities fell from 62% to 8%.
Lumry said that prior to beginning prophylaxis, 68% of caregivers had to make significant life adjustments, including stopping work or requesting schedule flexibility. While the study showed broad improvements, not every metric shifted; Lumry observed that communication and worry regarding unpredictable HAE attacks did not change significantly during the study period.
The analysis included 11 caregivers reporting on 13 patients who began lanadelumab at a mean age of 8.9 years. The duration of treatment averaged 3.7 years. PedsQL total scores—a measure of health-related quality of life—remained high during the treatment period, reaching 68.5 for children aged 5 to 7, 91 for those aged 8 to 12, and 84 for those aged 13 to 18.
Additional markers of family stability, such as PedsQL-FIM scores, reached 92 for family functioning and 90 for daily activities. The proportion of caregivers reporting that errands and household chores were affected by the child’s condition dropped from a range of 30% to 45% down to zero during the treatment phase.
Lanadelumab is a prophylactic treatment used to prevent HAE attacks. According to the FDA, the indication for the drug was expanded to include younger children in February 2023.
While the study showed marked improvements in sleep, work, and daily activity, Lumry said that the domains of family communication and anxiety regarding the unpredictability of HAE attacks did not show a statistically significant change. The findings were presented in Phoenix, Arizona, during the annual meeting held from November 12–16, 2026.
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