School of Basic Medical Sciences, Zhejiang Chinese Medical University, No.548 Binwen Road, Binjiang District, Hangzhou, Zhejiang Province, China.
School of Nursing, Zhejiang Chinese Medical University, No.548 Binwen Road, Binjiang District, Hangzhou, Zhejiang Province, China.
Orphanet J Rare Dis. 2023 Dec 21;18(1):393. doi: 10.1186/s13023-023-02993-y.
Despite the increasing incidence of aplastic anemia in China, few studies have explored its effect on the patients' quality of life from the perspective of these patients. In fact, patients with aplastic disorder live with the disease for a long time, and need to face a variety of difficult realities, including multiple disease symptoms and drug side effects, heavy burden of medical costs, difficulties in social reintegration, and negative emotional distress. Therefore, this study used descriptive qualitative research to explore the direct and rich quality-of-life experiences of patients with aplastic anemia.
A total of 19 patients with aplastic anemia were recruited in this study using purposive sampling combined with maximum variation strategy. 5 of the patients with AA were from northern China, and the others were from southern China. Data were collected using semi-structured interviews and analyzed using the conventional content analysis method.
This study yielded important information about the experiences of patients with aplastic anemia in China. The content analysis method finally identified 3 themes and 9 sub-themes, including: physical symptoms (declining physical capacity, treatment-related symptoms, changes in body image), psychological symptoms (mood changes related to the stage of the disease, change in self-image, growth resulting from the disease experience), social burden (decline in career development, perceived burden to the family, social stigma). Patients with AA from different regions didn't show much difference in quality of life.
Aplastic anemia affects the physical, psychological, and social aspects of patients' lives. Therefore, health care providers need to consider the patients' physical response and psychological feelings to provide relevant medical guidance and multi-channel social support that would improve their confidence and quality of life.
Name: Development and preliminary application of Quality of Life Scale for Patients with Aplastic Anemia. Number: ChiCTR2100047575. URL: http://www.chictr.org.cn/login.aspx?referurl=%2flistbycreater.aspx .
尽管中国再生障碍性贫血的发病率不断上升，但很少有研究从患者的角度探讨其对患者生活质量的影响。事实上，患有再生障碍性疾病的患者长期与疾病共存，需要面对多种困难的现实，包括多种疾病症状和药物副作用、沉重的医疗费用负担、社会再融入困难以及负面情绪困扰。因此，本研究采用描述性定性研究，从患者的角度探索再生障碍性贫血患者直接而丰富的生活质量体验。
本研究采用目的抽样法结合最大变异策略，共招募了 19 名再生障碍性贫血患者。其中 5 名 AA 患者来自中国北方，其余来自中国南方。采用半结构式访谈收集数据，并采用常规内容分析法进行分析。
本研究提供了有关中国再生障碍性贫血患者体验的重要信息。内容分析法最终确定了 3 个主题和 9 个亚主题，包括：身体症状（体力下降、与治疗相关的症状、身体形象改变）、心理症状（与疾病阶段相关的情绪变化、自我形象改变、疾病经历带来的成长）、社会负担（职业发展下降、家庭负担感、社会耻辱感）。来自不同地区的再生障碍性贫血患者在生活质量方面没有太大差异。
再生障碍性贫血影响患者的身体、心理和社会生活方面。因此，医疗保健提供者需要考虑患者的身体反应和心理感受，提供相关的医疗指导和多渠道的社会支持，以增强他们的信心和生活质量。
名称：再生障碍性贫血患者生活质量量表的编制及初步应用。编号：ChiCTR2100047575。网址：http://www.chictr.org.cn/login.aspx?referurl=%2flistbycreater.aspx。
