PDF(Pubmed)
Abstract：
BACKGROUND: Hereditary Angioedema (HAE) due to C1-inhibitor deficiency (C1INH) is a rare condition, clinically characterised by recurrent swelling. The unpredictability of attacks affects the patients\' quality of life (QoL). HAE patients and their families have vast unmet physical, psychological, and social needs. A human-centred design (HCD) approach to describing the needs of different user types is to utilise personas, a data-driven narrative tool for communicating user archetypes that capture the individuals\' attitudes, goals, and behaviours. The aim of this study was to create and analyse personas based on HAE patients\' and their caregivers\' interviews. Semi-structured interviews were conducted through anthropological conversations with patients, patient-caregivers (double role of patient and caregiver), and non-affected caregivers. Qualitative and quantitative insights from analyses formed the basis to create personas.
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.
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.
摘要：
背景：由于C1抑制剂缺乏症（C1INH）引起的遗传性血管性水肿（HAE）是一种罕见的疾病，临床特征为复发性肿胀。攻击的不可预测性影响患者的生活质量(QoL)。HAE患者及其家人有大量未满足的身体，心理,和社会需求。以人为中心的设计（HCD）方法来描述不同用户类型的需求是利用角色，一种数据驱动的叙事工具，用于传达捕捉个人态度的用户原型，目标,和行为。这项研究的目的是根据HAE患者及其护理人员的访谈创建和分析角色。半结构化访谈是通过与患者的人类学对话进行的，患者-护理人员（患者和护理人员的双重角色），和未受影响的护理人员。来自分析的定性和定量见解构成了创建角色的基础。
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。
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。
