Psychosocial Aspects of Thalassemia and Patient's Quality of Life: A Narrative Review

Alsaad, Ali

doi:10.5455/mjhs.2020.01.009

Cited by 5 publications

(8 citation statements)

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“…This study found that lower pre-transfusion hemoglobin levels negatively affected QoL, which is consistent with the result of previous studies ( 51 , 52 ). Several studies indicated that patients with more severe anemia tended to have a worse QoL ( 51 , 53 ).…”

Section: Discussionsupporting

confidence: 93%

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

Zhang

Ming

et al. 2023

Front. Public Health

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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.

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Section: Discussionsupporting

confidence: 93%

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

Zhang

Ming

et al. 2023

Front. Public Health

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“…go to the market or the hospital, buy essential goods or drugs). Anxiety and depression have been frequently reported as possible psychiatric comorbidities in adults with thalassemia (Alsaad, 2020; Aydinok et al, 2005; Ghanizadeh et al, 2006; Moorjani and Issac, 2006) and may cause an increase of hospital stay and higher health system costs when misrecognized (Alsaad, 2020). Although anxiety and uncertainty about life expectation are two main topics in b-TM condition (Ahmadi et al, 2020; Alsaad, 2020), these are not systematically explored in clinical settings and many b-TM patients and their caregivers do not receive adequate psychosocial support.…”

Section: Discussionmentioning

confidence: 99%

“…Anxiety and depression have been frequently reported as possible psychiatric comorbidities in adults with thalassemia (Alsaad, 2020; Aydinok et al, 2005; Ghanizadeh et al, 2006; Moorjani and Issac, 2006) and may cause an increase of hospital stay and higher health system costs when misrecognized (Alsaad, 2020). Although anxiety and uncertainty about life expectation are two main topics in b-TM condition (Ahmadi et al, 2020; Alsaad, 2020), these are not systematically explored in clinical settings and many b-TM patients and their caregivers do not receive adequate psychosocial support. Nonetheless, as supported by our data, non-pharmacological treatment issues in thalassemia should be a priority in the very next years in view at maintaining physical and mental health and improving their quality of life.…”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“…A large variety of maladaptive coping styles has been reported in thalassemia patients (Alsaad, 2020; Messina et al, 2008). Escape-avoidance thinking and behavior, as well as feelings of helplessness and hopelessness, have been described (Alsaad, 2020; Messina et al, 2008). In line with previous evidence (Ahmadi et al, 2020), in our sample we documented a more frequent use of spiritual and transcendent coping strategies in patients than in the general population.…”

Section: Discussionmentioning

confidence: 99%

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Uncertain crisis time affects psychosocial dimensions in beta-thalassemia patients during Covid-19 pandemic: A cross-sectional study

Cerami

Santi

Sammartano³

et al. 2021

J Health Psychol

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Psychosocial variables are key factors influencing the delicate equilibrium of chronic patients during crisis time. In this study, we explored distress, anxiety, depression, loneliness, coping strategies, and changes in life habits in 43 beta-thalassemia patients and 86 controls during Covid-19 pandemic. Patients showed higher anxiety levels and a predominant transcendent coping profile compared to controls. Patients significantly differed from controls in outdoor habits. Social isolation and habits changes in uncertain life-threaten situations as Covid-19 pandemic are particularly detrimental in fragile beta-thalassemia patients. Structured support interventions are needed to promote well-being in the Covid-19 era.

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Quality of Life and Related Factors in β-Thalassemia Patients

et al. 2021

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Psychosocial Aspects of Thalassemia and Patient's Quality of Life: A Narrative Review

Cited by 5 publications

References 0 publications

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

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

Uncertain crisis time affects psychosocial dimensions in beta-thalassemia patients during Covid-19 pandemic: A cross-sectional study

Quality of Life and Related Factors in β-Thalassemia Patients

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