Predictors of health state utility values using SF-6D for Chinese adult patients with β-thalassemia major

Abstract

BackgroundPatients with β-thalassemia major (β-TM), predominantly adult patients, are associated with physical, mental, and social problems, that result in decreased quality of life (QoL). However, there is a paucity of data on QoL and health status utility (HSU) among adult patients with β-TM in mainland China. Our study aimed to evaluate the QoL by short form 36 questionnaire (SF-36) of adult patients with β-TM in mainland China and to estimate their HSU by SF-6D. In addition, we aimed to identify predictors of HSU.MethodsIn this cross-sectional descriptive study, a total of 75 adult patients with β-TM were included by the snowball sampling method that applied involving seven provinces with a relatively high prevalence of thalassemia across mainland China between September 1, 2021 and January 31, 2022. The collected information included social-demographic characteristics, health conditions, treatment, social support (social support rating scale), caregiver burden (Zarit burden interview), and QoL (SF-36). HSU scores were calculated for each adult patient from their SF-36 responses using the SF-6D algorithm with Hong Kong's tariff. The frequency of participants' responses to the SF-6D for each item of the options was described. Mean HSU scores between different subgroups were calculated. Ordinary least squares (OLS) regression modeling was performed to identify factors associated with HSU.ResultsA total of 75 adult patients with β-TM were included in this study. The mean SF-36 score was 50.2 ± 10.70, of which physical and mental scores were 47.57 ± 11.28 and 52.85 ± 14.21, respectively. In addition, the mean SF-6D utility score was estimated to be 0.598 ± 0.112, ranging from 0.391 to 0.962. Univariate analyses showed that interruption of iron chelation treatment significantly affected HSU values (P = 0.038); diagnosis with comorbidity very slightly affected HSU values (P = 0.0996). In the multivariate analysis, diagnosis with comorbidity (P = 0.042) was significantly negatively associated with HSU values; the minimum pre-transfusion hemoglobin concentration (P = 0.047) and social support (P = 0.068) were positively associated with HSU values.ConclusionThis study presents poor QoL and HSU outcomes in Chinese adult patients with β-TM. The study also highlights the importance of social support and treatment compliance, which can increase hemoglobin content and reduce comorbidities, further to ensure the QoL of patients. These findings can be used for future clinical and economic studies.

Gender Disparities in Psychological Disturbances and Quality of Life Among Adolescent and Adult Patients with Thalassemia: A Review

“…Adolescent and adult patients with thalassemia are at higher risk of developing psychological disorders associated with physical, mental, and social problems that result in decreased QoL. 15 , 47 , 59 , 60 QoL measurement is a multidimensional concept that emphasizes the influence of the disease and its treatment on the well-being of an individual. 12 , 61 , 62 Thalassemia influences the patients’ well-being, which is reported as a difference in QoL regarding psychological, social, and health-related issues.…”

“…1,[8][9][10] Although the survival of patients with thalassemia has increased through a combination of regular blood transfusion and iron-chelating therapy, 1,9,[11][12][13][14] serious clinical and psychological challenges still exist. 11,15 Patients with thalassemia face several problems during their lives, including the signs and symptoms of thalassemia, the presence of complications and comorbid chronic conditions, and treatment-related issues including painful injections and regular hospital visits due to blood transfusions. [16][17][18] It has been known that patients with thalassemia suffer from a wide range of psychological problems and health-related quality of life (QoL).…”

A cross-sectional study: caregiver burden and related determinants of adult patients with β-thalassemia major in mainland China

“…In Greece, 89% of patients with β-TM in Greece lived beyond the age of 40 years, while 80% of patients in the United Kingdom lived beyond the age of 45 years [9]; however, the highest life expectancy of patients with β-TM in Guangxi, China, was only 28 years [10]. Compared to children with β-TM, the quality of life of adult patients is significantly lower due to multiple organ dysfunction, chronic pain, and loss of physical fitness [11,12].…”