HEALTH-RELATED QUALITY OF LIFE IN PATIENTS WITH CHRONIC GRAFT-VERSUS-HOST DISEASE IN CHINA: A MIXED-METHODS STUDY
Author(s)
Hong-fei Hu, MS1, Lu Ying Wang, PhD1, Xiaoli Liang, MS2, Xiaoqi Wang, PhD2, Min Zhao, MS1, zhihan liu, MS1, Yiru Ma, MS1, Lianghui Mao, MS1, Li Li, PhD2, Jia Liu, PhD2, Xi Zhang, PhD2, Hongchao Li, PhD1.
1China Pharmaceutical University, Nanjing, China, 2Xinqiao Hospital of Army Medical University, Chongqing, China.
1China Pharmaceutical University, Nanjing, China, 2Xinqiao Hospital of Army Medical University, Chongqing, China.
OBJECTIVES: Chronic graft-versus-host disease (cGVHD) is a major long-term complication of allogeneic hematopoietic stem cell transplantation, affecting multiple organ systems and compromising health-related quality of life (HRQoL). Given the limited HRQoL data for cGVHD, particularly in China, this study aimed to provide both qualitative and quantitative HRQoL data in this population.
METHODS: A cross-sectional survey was conducted among cGVHD patients, incorporating a self-administered questionnaire and semi-structured interviews. Patients were purposively recruited from two hospitals in Chongqing and Hangzhou, China. The questionnaire collected sociodemographic data, the EQ-5D-5L, and the Modified 7-Day Lee cGVHD Symptom Scale (LSS). Semi-structured interviews followed predefined topics (e.g., symptom characteristics, functional impact, and psychosocial burden). Interviews were audio-recorded, transcribed verbatim, and thematically analyzed. Utility scores were estimated using the Chinese EQ-5D-5L value set, and raw LSS scores were calculated.
RESULTS: A total of 61 cGVHD patients were enrolled (mean age 40.8 years; 55.7% male; mean cGVHD duration 20.2 months; 59.0% moderate-to-severe). The mean EQ-5D-5L utility score was 0.839 (SD=0.195), with pain/discomfort being the most commonly affected (59.0% reporting problems). The mean LSS score was 18.4 (SD=11.3), with dry eyes as the most frequent symptom. Qualitative findings identified the top ten affected domains: eyes, skin, oral cavity, musculoskeletal system, lungs, liver, reproductive system, gastrointestinal system, psychological/emotional status, and sleep. Notably, the EQ-5D-5L seemed to inadequately capture involvement across several organ systems, suggesting that the EQ-5D-5L may have limited content validity for cGVHD. Although the LSS provided more symptom-oriented information, it did not fully cover the breadth of multisystem manifestations, particularly hepatic and reproductive involvement.
CONCLUSIONS: Although the EQ-5D-5L and LSS were applied to generate HRQoL data of cGVHD patients, both instruments showed limitations in capturing the full spectrum of cGVHD-related health impairments. These findings underscore the need to develop comprehensive, disease-specific assessment tools informed by patient-reported experiences.
METHODS: A cross-sectional survey was conducted among cGVHD patients, incorporating a self-administered questionnaire and semi-structured interviews. Patients were purposively recruited from two hospitals in Chongqing and Hangzhou, China. The questionnaire collected sociodemographic data, the EQ-5D-5L, and the Modified 7-Day Lee cGVHD Symptom Scale (LSS). Semi-structured interviews followed predefined topics (e.g., symptom characteristics, functional impact, and psychosocial burden). Interviews were audio-recorded, transcribed verbatim, and thematically analyzed. Utility scores were estimated using the Chinese EQ-5D-5L value set, and raw LSS scores were calculated.
RESULTS: A total of 61 cGVHD patients were enrolled (mean age 40.8 years; 55.7% male; mean cGVHD duration 20.2 months; 59.0% moderate-to-severe). The mean EQ-5D-5L utility score was 0.839 (SD=0.195), with pain/discomfort being the most commonly affected (59.0% reporting problems). The mean LSS score was 18.4 (SD=11.3), with dry eyes as the most frequent symptom. Qualitative findings identified the top ten affected domains: eyes, skin, oral cavity, musculoskeletal system, lungs, liver, reproductive system, gastrointestinal system, psychological/emotional status, and sleep. Notably, the EQ-5D-5L seemed to inadequately capture involvement across several organ systems, suggesting that the EQ-5D-5L may have limited content validity for cGVHD. Although the LSS provided more symptom-oriented information, it did not fully cover the breadth of multisystem manifestations, particularly hepatic and reproductive involvement.
CONCLUSIONS: Although the EQ-5D-5L and LSS were applied to generate HRQoL data of cGVHD patients, both instruments showed limitations in capturing the full spectrum of cGVHD-related health impairments. These findings underscore the need to develop comprehensive, disease-specific assessment tools informed by patient-reported experiences.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR40
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)