Changes in the quality of life of people with thalassemia major between 2001 and 2009

Gollo, Giorgia; Savioli, Gaia; Balocco, Manuela; Venturino, Cristina; Boeri, E; Costantini, Massimo; Forni, Gian Luca

doi:10.2147/ppa.s42133

Cited by 24 publications

(22 citation statements)

References 20 publications

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“… 7 , 9 This study shows that normal controls have significantly higher score than patients with β-thalassemia in physical domain; patients are subject to the long-term side effects of chronic anemia and repeated transfusions. 4 , 10 - 13 However, we have found that patients with β-thalassemia have significantly higher score in the social domain, in contrary to other studies results. 4 , 10 , 14 - 16 Other studies, however reported that their study subjects felt that the disease did not affect their family or social relationships.…”

Section: Discussioncontrasting

confidence: 99%

“…3 Morbidity and mortality related to thalassemia have been reduced significantly with modern medical treatment, and QOL should now be considered an important index of effective health care and an essential outcome when considering options for treatment for individual patients and the allocation of health care resources. 4 As per the World Health Organization (WHO) definition, QOL is individuals’ perceptions of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns. 5 In clinical practice the QOL assessments will assist clinicians in making judgments in regards to the areas in which a patient is most affected by disease, and in making treatment decisions.…”

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confidence: 99%

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Comprehensive patient care improves quality of life in transfusion dependent patients with β-thalassemia

Ali

Tarawah

Al-Hawsawi

et al. 2015

SMJ

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Objectives:To investigate levels of quality of life (QOL) among thalassemia patients at the Hereditary Blood Disorders Center in Al-Madinah Al-Munawarah, Kingdom of Saudi Arabia.Methods:A cross-sectional study was performed on 43 transfusion dependent thalassemia patients compared with 43 normal subjects, as a control, using the World Health Organization Quality Of Life - Brief questionnaire between May 2012 and September 2012 at the Hereditary Blood Disorders Center, Maternity and Children Hospital in Al-Madinah Al-Munawarah, Kingdom of Saudi Arabia.Results:Forty-three thalassemia patients were examined, 23 males and 20 females, and compared with 43 peers (control group), 24 males and 19 females. There was no statistical difference between patients and controls for psychological domains (53.4 versus 56.9, p=0.059) and environmental domains (56.6 versus 57.0, p=0.884). Patients had better social QOL than the control group (39.3 versus 31.7, p=0.003), while the control group had better physical QOL (55.4 versus 61.9, p=0.047). Among patients, there was no statistical difference in QOL domains for variables of age, desferroxamine use, serum ferritin level, disease severity, presence of complications; splenectomy status, hepatitis C virus status, or family history.Conclusion:Quality of life in thalassemia patients is similar to the control group particularly social life, though physical health is less. Improvement of patients care from all aspects will improve their QOL. More studies in this field are needed with a bigger sample size.

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Section: Discussioncontrasting

confidence: 99%

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confidence: 99%

Comprehensive patient care improves quality of life in transfusion dependent patients with β-thalassemia

Ali

Tarawah

Al-Hawsawi

et al. 2015

SMJ

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“…The patients' self-support can stimulate their forgotten abilities and apply them to eliminate the defects imposed on them by thalassemia and use it as a positive point to reinforce their ambitions and self-confidence. Gollo et al (2013) showed that there was no difference but the findings of the present study were in contrary to it and a little predominance was observed in males.…”

Section: Discussioncontrasting

confidence: 94%

Quality of Life and Some Related Factors in Patients With Beta Thalassemia Major in Southwest Iran

Madmoli

Rahmati

et al. 2017

JCCNC

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Background: Thalassemia is one of the most common genetic disorders in the world, especially in Iran. The study of various aspects affecting the physical and mental health of patients with beta thalassemia major has become more important. The aim of this study was to evaluate the Quality of life and some related factors in patients with beta-thalassemia major in Southwest Iran. Methods: In this cross-sectional, descriptive study, quality of life and related factors in 112 thalassemia major patients with available sampling attending Dezful Thalassemia Center has been studied in the first three months of 2015. Data collection was based on self-report including demographic questionnaire and 36-SF quality of life questionnaire. Finally, the data were analyzed using SPSS software version 18 and chi-square test, T-test, and Pearson's correlation coefficients. Results: Patients with beta thalassemia major, including 66 males (58.92%) and 46 females (41.07%) with a mean age of 23 years were enrolled in the study. The lowest and highest scores were obtained in general health (63.59) and physical functioning (85.25), respectively. Findings showed that there is no statistically significant difference (P = 0.025) between men and women in all aspects of quality of life except role disorder. It was also found that married people have a higher quality of life and mental health in comparison to other people (P < 0.05). In addition, there was a negative correlation between age and physical health, mental health, and quality of life total scores which were not statistically significant (P = 0.46). Conclusion: The present study results showed well that age, income level, and marital status indices play a very important role in the maintenance of quality of life and the reduction of negative effects of disease on patient's mental and physical health. The limitations of this study are to examine the dimensions of quality of life in a center. It seems that future studies should look at ways to improve their quality of life.

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“…Other studies have also found impaired HRQOL in thalassemia in Italy [6–8], the UK [9], and in a small US cohort [10]. Only a single small (N=43) recent study in Italy [11] has examined change in HRQOL in thalassemia, finding improvement over 8 years, associated with a shift in the distribution of chelator choice over the same time period.…”

Section: Introductionmentioning

confidence: 99%

Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia

Trachtenberg

Gerstenberger

et al. 2014

Qual Life Res

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Purpose Thalassemia, a chronic blood disease, necessitates life-long adherence to blood transfusions and chelation therapy to reduce iron overload. We examine stability of Health-Related Quality of Life (HRQOL) in thalassemia and adherence to chelation therapy over time, especially after changes in chelator choice. Methods Thalassemia Longitudinal Cohort participants in the US, UK, and Canada completed the SF-36v2 (ages 14+), and the PF-28 CHQ (parents of children<14 years). Chelation adherence was defined as self-reported percent of doses administered in the last 4 weeks. Results 258 adults/adolescents (mean 29.7 years) and 133 children (mean 8.5 years) completed a mean of 2.8 years follow-up. Children made few chelator changes, whereas a mean of 2.2 changes was observed among the 37% of adults/adolescents who made chelator changes, mainly, due to patient preference or medical necessity. Physical HRQOL improved among those with lower iron burden (better health status) at baseline who made a single change in chelator, but declined among participants with multiple changes and/or high iron burden (worse health status). Mental health improved among participants with lower iron burden, but iron overload was negatively associated with social functioning. Adherence did not significantly change over follow-up except for an increase after a change from DFO infusion to oral deferasirox (p=0.03). Predictors of lower adherence for adults/adolescents at follow-up included side effects, smoking, younger age, problems preparing DFO, increased number of days per week DFO prescribed, and lower physical QOL. Conclusions Strategies to balance medical needs with family, work, and personal life may assist in adherence.

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Changes in the quality of life of people with thalassemia major between 2001 and 2009

Cited by 24 publications

References 20 publications

Comprehensive patient care improves quality of life in transfusion dependent patients with β-thalassemia

Comprehensive patient care improves quality of life in transfusion dependent patients with β-thalassemia

Quality of Life and Some Related Factors in Patients With Beta Thalassemia Major in Southwest Iran

Relationship among chelator adherence, change in chelators, and quality of life in Thalassemia

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