Locus of Decision-making and Treatment Preferences among Patients with Aplastic Anemia in China

Abstract

Abstract Aplastic Anemia (AA) is a non-malignant blood disorder characterized by anemia, bleeding, and increased susceptibility to infection, resulting in poor quality of life for patients. Despite extensive research, the disease remains challenging to cure, leaving patients with limited options for treatment. The incidence of AA in China is approximately 0.74 per 100,000 persons, posing a significant public health issue. Our study focused on investigating the decision-making process of AA patients in 16 provinces of China, utilizing both qualitative and quantitative research methods, including electronic questionnaire surveys and personal interviews. The study sample comprised 2155 participants from online patient organizations, and 186 valid responses were collected. The survey aims to identify the current treatment options utilized by AA patients, the source of medical decision-making, and other relevant information. The findings reveal that many treatments for AA are not covered by insurance, which results in significant financial burdens on patients and further diminishes their quality of life. Additionally, the social network surrounding AA patients significantly impacts their medical decisions, with many seeking input from healthcare providers, relatives, friends, and other AA patients, as well as media sources. In addition to biomedical treatment, patients with AA should explore alternative medical treatments, including traditional Chinese medicine, folk remedies, and other public medical practices.