title: Barriers to self-administered therapy for hereditary angioedema.
abstract: Presently, the movement of care for hereditary angioedema (HAE) is out of the clinic, emergency department, and hospitals and into the home. Much of the transition relies on specialized nurses who teach patients self-administration skills. Our goal was to assess nurses to uncover barriers that they have encountered in an effort to improve self-therapy education and patient care. A survey of 21 questions was sent to 38 HAE home care nurses throughout the United States. Results were collected anonymously and data were analyzed. Nurses feel that there is an increased need for teaching patients self-therapy skills. The majority are very comfortable teaching self-administration and troubleshooting-associated problems. Perceived difficulties in providing adequate teaching include distance to patient's home and logistics of coordinating, scheduling, and obtaining supplies. Teaching is preferred when done at home by a visiting nurse with a care partner available and multiple training sessions are needed. Very few patients refused self-administration after initially being taught; reasons cited for refusal include fear of injection or infection, lack of skills, interference of daily activities, and financial restraints. As for nurses, they were most worried about safety, lack of skill retention, and inappropriate use of the drug. Self- administration of HAE treatment is increasingly more accessible and should be offered to patients as a safe and practical option. The barriers to self-administration revealed in this study include distance to the patient's home, coordinating care, obtaining medications/equipment, and scheduling training sessions. Moving to self- or home treatment through nursing instruction will improve patient's independence and quality of life, lead to earlier therapy, and reduce costs associated with care.
authors.affiliation: Department of Medicine, Penn State University, Milton S. Hershey Medical Center, Hershey, Pennsylvania, USA.
authors.forename: Linh-An C
authors.initials: LA
authors.lastname: Tuong
authors.forename: Kirsten
authors.initials: K
authors.lastname: Olivieri
authors.forename: Timothy J
authors.initials: TJ
authors.lastname: Craig
mesh_terms: D000293:Adolescent; D000328:Adult; D054179:Angioedemas, Hereditary / Q000453:epidemiology* / Q000628:therapy; D002648:Child; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D009722:Nurse Practitioners; D010349:Patient Compliance; D010818:Practice Patterns, Physicians'; D012648:Self Care; D055815:Young Adult