Psychosocial implications of Thalassemia Major

Aydınok, Yeşim; Erermiş, Serpil; Bukusoglu, Nagihan; Yılmaz, Deniz; Solak, Ufuk

doi:10.1111/j.1442-200x.2004.02009.x

Cited by 67 publications

(76 citation statements)

References 15 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…The Psychosocial Health Summary score of the thalassaemia patients were also lower than in the healthy controls. This finding seems to support previous studies on psychosocial aspects of thalassaemia about necessity for providing more psychosocial support for thalassaemia patients (28,29).…”

Section: Thalassaemia Patients N=60supporting

confidence: 91%

Health related quality of life in children with thalassaemia assessed on the basis of SF-20 questionnaire in Yazd, Iran: a case-control study

Baghianimoghadam¹,

Sharifirad²,

Rahaei³

et al. 2011

Cent Eur J Public Health

View full text Add to dashboard Cite

SUMMARYBackgrounds: Thalassaemia is becoming serious public health problem throughout the Mediterranean region, Middle East, Indian subcontinents and also South East Asia. Its' global prevalence is about 2 per 1,000 newborns while its' prevalence in Iran is 8-4 per 1,000 newborns. The aim of this study was to compare the Health Related Quality of Life (HRQOL) of thalassaemia patients with the HRQOL of healthy children in terms of essential core domains for pediatric HRQOL measurement.Methods: This cross sectional study has been done in Yazd, Iran. 60 thalassaemia patients were selected randomly as case group and 120 healthy children as control group who were matched with respect to age and gender. The health related quality of life was measured with a self -administrated short -form questionnaire of Medical Outcomes study . The SF-20 measure contains three dimensions about function (physical, social and role) and well-being (mental health, health perception and pain).Results: The results of this study showed significant difference between all dimension of SF-20 and QOL of patients in the case and control group (p<0.001). The QOL in the case group was 75.05 (SD=9.38), but in the control group was 93.4 (SD=6.42) out of 100.Conclusions: The effect of thalassaemia on the HRQOL in affected children has been related to reduction of their physical, social and mental capabilities.

show abstract

Section: Thalassaemia Patients N=60supporting

confidence: 91%

Health related quality of life in children with thalassaemia assessed on the basis of SF-20 questionnaire in Yazd, Iran: a case-control study

Baghianimoghadam¹,

Sharifirad²,

Rahaei³

et al. 2011

Cent Eur J Public Health

View full text Add to dashboard Cite

show abstract

“…Psychosocial support should be scheduled for patients and their families in order to prevent mental health issues, behavioral problems and illness complications. 30 Promotion of knowledge about the benefits of therapeutic and prophylactic processes may reduce the level of emotional distress and increase the quality of therapy. 31 Attendance by social workers and psychologists at treatment centers, to provide support and regular peripheral interviews with patients, can improve QoL.…”

Section: Discussionmentioning

confidence: 99%

Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire

et al. 2013

View full text Add to dashboard Cite

CONTEXT AND OBJECTIVE: Patients with beta-thalassemia major (β-TM) experience physical, psychological and social problems that lead to decreased quality of life (QoL). The aim here was to measure health-related QoL and its determinants among patients with β-TM, using the Short Form-36 (SF-36) questionnaire. DESIGN AND SETTING: Cross-sectional study at the Hematology Research Center of Shiraz University of Medical Sciences, in southern Iran. METHODS: One hundred and one patients with β-TM were randomly selected. After the participants' demographics and disease characteristics had been recorded, they were asked to fill out the SF-36 questionnaire. The correlations of clinical and demographic factors with the QoL score were evaluated. RESULTS: There were 44 men and 57 women of mean age 19.52 ± 4.3 years (range 12-38). On two scales, pain (P = 0.041) and emotional role (P = 0.009), the women showed significantly lower scores than the men. Lower income, poor compliance with iron-chelating therapy and presence of comorbidities were significantly correlated with lower SF-36 scores. These factors were also found to be determinants of worse SF-36 scores in multivariate analysis. CONCLUSIONS: We showed that the presence of disease complications, poor compliance with ironchelating therapy and poor economic status were predictors of worse QoL among patients with β-TM. Prevention and proper management of disease-related complications, increased knowledge among patients regarding the importance of managing comorbidities and greater compliance with iron-chelating therapy, along with psychosocial and financial support, could help these patients to cope better with this chronic disease state. RESUMO

show abstract

“…4 In addition, other studies have found that thalassemic patients are distressed about their disease and treatments and may have many different psychosocial and behavioral problems. [5][6][7][8] Allogeneic hematopoietic SCT (HSCT) from an HLA-matched donor remains the only proven curative therapy for transfusion-dependent thalassemia at present. Observations over more than 20 years have confirmed the durability of this cure.…”

Section: Introductionmentioning

confidence: 99%

Quality of life in patients with transfusion-dependent thalassemia after hematopoietic SCT

Cheuk

Mok

Lee

et al. 2008

Bone Marrow Transplant

View full text Add to dashboard Cite

In this cross-sectional study, we compared the quality of life (QOL) in transfusion-dependent thalassemic patients who survived matched sibling hematopoietic SCT (HSCT, n ¼ 24) with patients treated conventionally with transfusion and iron chelation (n ¼ 74). WHOQOL-BREF(HK) and PedsQL questionnaires were administered to patients aged 418 years and 5-12 years, respectively. Patients aged 12-18 years received both questionnaires. WHOQOL-BREF(HK) revealed post transplant patients rated overall health better than those treated conventionally (score 3.67 vs 3.06, P ¼ 0.01). They are less dependent on medical aids (3.87 vs 2.96, P ¼ 0.006), having higher activity level (4.00 vs 3.36, P ¼ 0.026) and better personal relationships (4.13 vs 3.69, P ¼ 0.014). Physical health domain score was better (75.20 vs 63.94, P ¼ 0.007). These differences remained significant after adjustment for comorbidities. PedsQL revealed post transplant patients rated better for running (3.53 vs 2.72, P ¼ 0.001) and sports (3.20 vs 2.64, P ¼ 0.038), even after adjustment for comorbidities, but were less satisfied for school absence to attend hospital (2.53 vs 3.29, P ¼ 0.03). Post transplant patients were significantly more likely to consider marriage (100 vs 75.7%, P ¼ 0.033), but not childbearing (66.7 vs 51.4%, P ¼ 0.28). In conclusion, transplanted thalassemic patients enjoy better QOL, mainly in physical health, compared with conventionally treated patients. This information is important to patients considering HSCT.

show abstract

Psychosocial implications of Thalassemia Major

Cited by 67 publications

References 15 publications

Health related quality of life in children with thalassaemia assessed on the basis of SF-20 questionnaire in Yazd, Iran: a case-control study

Health related quality of life in children with thalassaemia assessed on the basis of SF-20 questionnaire in Yazd, Iran: a case-control study

Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire

Quality of life in patients with transfusion-dependent thalassemia after hematopoietic SCT

Contact Info

Product

Resources

About