RESULTS: We enrolled 17 subjects: 15 patients (6 of them were patient-caregivers) and 2 non-affected caregivers. The mean age of participants was 50.3 ± 14.4 years. Eight patients were on treatment with prophylactic therapy. The mean percentage score of Angioedema Quality of Life (AE-QoL) for HAE patients was 19.8 ± 12.0. Six personas were identified describing the participants\' personal history, disease management, and needs: four personas referred to patients, one to patient-caregivers, and one non-affected caregiver personas were identified. Across patient personas, the most expressed needs were psychological support and better awareness amongst healthcare professionals. Caregivers, on their side, desired better information about the disease, including the latest therapies, and higher awareness within the community.
CONCLUSIONS: A Human Centred Innovative Approach Based on Persona extends beyond the physical symptoms to encompass the psychological and social aspects of the individual\'s well-being also including the family in the evaluation.
结果:我们招募了17名受试者:15名患者(其中6名是患者照顾者)和2名未受影响的照顾者。参与者的平均年龄为50.3±14.4岁。8例患者接受预防性治疗。HAE患者的血管性水肿生活质量(AE-QoL)的平均百分比评分为19.8±12.0。确定了六个描述参与者个人历史的角色,疾病管理,和需求:四个角色指的是病人,一个给病人护理人员,并确定了一名未受影响的护理人员。跨患者角色,表达最多的需求是医疗专业人员的心理支持和更好的意识。看护者,在他们这边,想要更好的疾病信息,包括最新的疗法,以及社区内更高的意识。
结论:基于人物角色的以人为本的创新方法超出了身体症状,涵盖了个人福祉的心理和社会方面,也包括评估中的家庭。