ArticleOrphanet journal of rare diseases2023
Experience of life quality from patients with aplastic anemia: a descriptive qualitative study.
Article in Orphanet journal of rare diseases, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed, 8 citations in OpenAlex.
- Incidence trends of aplastic anaemia in Kazakhstan: a nationwide study (2014-2024).Frontiers in medicine · 2026Article
- The relationship between illness perception and quality of life among Chinese rural elderly patients with hypertension: the mediating role of medication experience.BMC geriatrics · 2025Article
- Effect of home-based exercise program on patients with aplastic anemia treated with allogeneic hematopoietic stem cell transplantation: a non-randomized trial.Journal of cancer survivorship : research and practice · 2025Article
- Heterogeneity in Health-Related Quality of Life of Patients with Aplastic Anemia: A Latent Profile Analysis.Patient preference and adherence · 2025Article
- Potential of ginsenoside Rg1 to treat aplastic anemiaWorld journal of stem cells · 2024Article
- Oral health-related quality of life in Fanconi anemia: a cross-sectional study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Observational
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6 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundDespite 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.
methodsA 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.
resultsThis 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.
conclusionsAplastic 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 registrationName: 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 .
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