Experience of life quality from patients with aplastic anemia: a descriptive qualitative study | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

Experience of life quality from patients with aplastic anemia: a descriptive qualitative study

Journal Title: 
Orphanet Journal of Rare Diseases
Primary Author: 
Liu T
Liu T, Pan Y, Ye M, Sun Q, Ding X, Xu M
Original Publication Date: 
Thursday, December 21, 2023
Bone Marrow Disease(s): 

Background: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Clinical trial registration: 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 .

Keywords: Aplastic anemia; Experiences; Qualitative study; Quality of life.