Quality of Life and Burden of Disease in Italian Patients with Transfusion-Dependent Beta-Thalassemia.

Davide Cafiero,Gian Luca Forni,Daniele Piovani,Fabio Tedone,Stefania Lopatriello,Piero Lamendola

doi:10.3390/jcm11010015

Abstract

Lifespan treatment in transfusion-dependent β-thalassemia (TDT) is expected to impact quality of life. This study aimed at evaluating health-related quality of life (HRQoL), well-being, and the burden of TDT on Italian patients. Patients (≥14 years) were invited to complete a cross-sectional, online volunteer survey. HRQoL was measured by the 36-item short-form health survey (SF-36) and wellbeing was measured by the Italian version of the Psychological General-Well-Being-Index (PGWBI). A total of 105/167 completed questionnaires were analyzed (46% males; median age 44, (IQR = 11)). Patients reported lower HRQoL compared with the general population in all SF-36 domains (except for emotional well-being (p = 0.7024) and role limitations due to emotional problems (p = 0.1389)). PGWBI domains general health and vitality and the total PGWBI score were all significantly lower (p = 0.0001) compared with the general population. On average, patients spent 16.62 h/month engaged in care activities that were additional to the time required for completing transfusions. Of the 16.62 h/month, 11.7 h/month were required for therapy management and 4.92 h/month for family management. This study found lower HRQoL and well-being in physical and psychological domains compared with the general population. Further, patients were found to have a high perceived burden of disease.

Highlights

Transfusion-dependent β-thalassemia (TDT) is a chronic, hereditary disease characterized by severe anemia
health-related quality of life (HRQoL) was measured by the 36-item short-form health survey (SF-36) and wellbeing was measured by the Italian version of the Psychological General-Well-BeingIndex (PGWBI)
This study found lower HRQoL and well-being in physical and psychological domains compared with the general population

Summary

Introduction

Transfusion-dependent β-thalassemia (TDT) is a chronic, hereditary disease characterized by severe anemia. More literature has explored measuring well-being, because it is a validated population outcome for the assessment of how people perceive their life [9,10,11,12,13] It is associated with a lower risk of disease, better immune system functioning, faster recovery, and greater longevity [14,15,16,17,18]. It is a good indicator of people’s functions [19]; that is, individuals with high levels of well-being are more productive at work and are more likely to contribute to their communities [20].

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