HAE Unit, IRCCS Istituti Clinici Scientifici Maugeri, Via Camaldoli 64, 20138, Milan, Italy.
Your Business Partner, London, UK.
Orphanet J Rare Dis. 2024 Aug 10;19(1):291. doi: 10.1186/s13023-024-03302-x.
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.
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.
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.
由于 C1 抑制剂缺乏（C1INH）导致的遗传性血管性水肿（HAE）是一种罕见的疾病，其临床特征为反复发作的肿胀。发作的不可预测性影响了患者的生活质量（QoL）。HAE 患者及其家属存在广泛的未满足的身体、心理和社会需求。一种以人为中心的设计（HCD）方法来描述不同用户类型的需求是利用人物角色，这是一种数据驱动的叙事工具，用于传达捕获个人态度、目标和行为的用户原型。本研究的目的是基于 HAE 患者及其护理人员的访谈创建和分析人物角色。通过与患者、患者护理人员（患者和护理人员的双重角色）和非患者护理人员进行人类学对话进行半结构化访谈。分析中的定性和定量见解为创建人物角色提供了基础。
我们招募了 17 名参与者：15 名患者（其中 6 名是患者护理人员）和 2 名非患者护理人员。参与者的平均年龄为 50.3±14.4 岁。8 名患者接受预防性治疗。HAE 患者的血管性水肿生活质量（AE-QoL）平均百分比评分为 19.8±12.0。确定了 6 个人物角色来描述参与者的个人历史、疾病管理和需求：4 个人物角色涉及患者，1 个人物角色涉及患者护理人员，1 个非患者护理人员角色。在患者人物角色中，最表达的需求是心理支持和提高医疗保健专业人员的认识。另一方面，护理人员希望更好地了解疾病，包括最新的治疗方法，并提高社区内的认识。
基于人物角色的以人为本的创新方法不仅涵盖了个人幸福感的身体症状，还涵盖了心理和社会方面，还包括在评估中纳入家庭。
