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Barriers to self-administered therapy for hereditary angioedema
Linh-An C Tuong1, Kirsten Olivieri, Timothy J Craig
1Department of Medicine, Penn State University, Milton S. Hershey Medical Center, Hershey, Pennsylvania, USA.
Allergy and Asthma Proceedings
|May 8, 2014
Summary
Home care nurses find hereditary angioedema (HAE) self-therapy education effective but face challenges. Improving patient independence requires addressing barriers like distance and scheduling for HAE self-administration.
Area of Science:
- Medical Care
- Nursing Practice
- Patient Education
Background:
- Hereditary angioedema (HAE) management is shifting from clinical settings to home-based care.
- Specialized nurses play a crucial role in educating patients for self-administration of HAE therapies.
Purpose of the Study:
- To identify barriers encountered by nurses in HAE self-therapy education.
- To inform improvements in patient education and home care for HAE management.
Main Methods:
- A 21-question anonymous survey was distributed to 38 HAE home care nurses in the United States.
- Data from the survey responses were collected and analyzed to identify trends and challenges.
Main Results:
- Nurses are comfortable teaching HAE self-administration but cite distance, scheduling, and supply logistics as key teaching barriers.
- Patients rarely refuse self-administration; common reasons include fear, skill deficits, and financial constraints.
- Nurses' primary concerns involve patient safety, skill retention, and appropriate drug use.
Conclusions:
- Home-based HAE self-administration is a safe and practical option, enhancing patient independence and quality of life.
- Addressing logistical barriers in nursing instruction is essential for successful HAE home therapy.
- Improved self-therapy education can lead to earlier treatment and reduced healthcare costs for HAE patients.
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