Department of Medicine, Penn State University, Milton S. Hershey Medical Center, Hershey, Pennsylvania, USA.
Allergy Asthma Proc. 2014 May-Jun;35(3):250-4. doi: 10.2500/aap.2014.35.3753.
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.
目前，遗传性血管性水肿（HAE）的护理工作已经从诊所、急诊室和医院转移到了患者家中。这一转变在很大程度上依赖于专门的护士，他们负责教授患者自我管理技能。我们的目标是评估护士在自我治疗教育和患者护理方面所遇到的障碍，以寻求改进。我们向全美 38 名 HAE 家庭护理护士发送了一份包含 21 个问题的调查。结果是匿名收集的，并进行了数据分析。护士们认为，患者自我治疗技能的教学需求有所增加。大多数护士非常愿意教授自我给药和解决相关问题。在提供足够的教学方面，护士们认为存在一些困难，包括与患者家庭的距离、协调、安排和获得供应品的后勤问题。他们更喜欢由家庭访问护士来进行教学，并且需要有护理伙伴在场和多次培训课程。很少有患者在最初接受教学后拒绝自我给药；拒绝的原因包括害怕注射或感染、缺乏技能、日常活动干扰以及经济限制。至于护士，他们最担心的是安全问题、技能保留问题和药物的不当使用。HAE 治疗的自我管理越来越容易获得，应作为一种安全实用的选择提供给患者。这项研究揭示了自我管理所面临的障碍，包括与患者家庭的距离、协调护理、获得药物/设备以及安排培训课程。通过护理指导实现自我或家庭治疗将提高患者的独立性和生活质量，更早地开始治疗，并降低与护理相关的成本。
