Experience of life quality from patients with aplastic anemia: a descriptive qualitative study
Abstract 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 o...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-12-01
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| Series: | Orphanet Journal of Rare Diseases |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13023-023-02993-y |
| _version_ | 1797376803481845760 |
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| author | Ting Liu Yue Pan Menghua Ye Qiuhua Sun Xinghong Ding Min Xu |
| author_facet | Ting Liu Yue Pan Menghua Ye Qiuhua Sun Xinghong Ding Min Xu |
| author_sort | Ting Liu |
| collection | DOAJ |
| description | Abstract 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 . |
| first_indexed | 2024-03-08T19:43:51Z |
| format | Article |
| id | doaj.art-d57bb17ddfe04c91b33be073166e8420 |
| institution | Directory Open Access Journal |
| issn | 1750-1172 |
| language | English |
| last_indexed | 2024-03-08T19:43:51Z |
| publishDate | 2023-12-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj.art-d57bb17ddfe04c91b33be073166e84202023-12-24T12:29:04ZengBMCOrphanet Journal of Rare Diseases1750-11722023-12-0118111110.1186/s13023-023-02993-yExperience of life quality from patients with aplastic anemia: a descriptive qualitative studyTing Liu0Yue Pan1Menghua Ye2Qiuhua Sun3Xinghong Ding4Min Xu5School of Basic Medical Sciences, Zhejiang Chinese Medical UniversitySchool of Nursing and Health, Zhejiang Changzheng Vocational and Technical CollegeThe First Affiliated Hospital of Zhejiang Chinese Medical University (Zhejiang Provincial Hospital of Chinese Medcine)School of Nursing, Zhejiang Chinese Medical UniversitySchool of Basic Medical Sciences, Zhejiang Chinese Medical UniversityThe First Affiliated Hospital of Zhejiang Chinese Medical University (Zhejiang Provincial Hospital of Chinese Medcine)Abstract 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 .https://doi.org/10.1186/s13023-023-02993-yAplastic anemiaExperiencesQualitative studyQuality of life |
| spellingShingle | Ting Liu Yue Pan Menghua Ye Qiuhua Sun Xinghong Ding Min Xu Experience of life quality from patients with aplastic anemia: a descriptive qualitative study Orphanet Journal of Rare Diseases Aplastic anemia Experiences Qualitative study Quality of life |
| title | Experience of life quality from patients with aplastic anemia: a descriptive qualitative study |
| title_full | Experience of life quality from patients with aplastic anemia: a descriptive qualitative study |
| title_fullStr | Experience of life quality from patients with aplastic anemia: a descriptive qualitative study |
| title_full_unstemmed | Experience of life quality from patients with aplastic anemia: a descriptive qualitative study |
| title_short | Experience of life quality from patients with aplastic anemia: a descriptive qualitative study |
| title_sort | experience of life quality from patients with aplastic anemia a descriptive qualitative study |
| topic | Aplastic anemia Experiences Qualitative study Quality of life |
| url | https://doi.org/10.1186/s13023-023-02993-y |
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