Thalassemic Children's Understanding of Illness: A Study of Cognitive and Emotional Factors

Sherman, Miriam; Koch, Diane; Giardina, Patricia J.; Hymowitz, Paul; Siegel, Richard M.; Shapiro, Theodore

doi:10.1111/j.1749-6632.1985.tb17203.x

Cited by 18 publications

(11 citation statements)

References 9 publications

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“…For thalassemia, this was three times the rate seen in unaffected children. This finding is confirmed by other studies concerning thalassemia 6‐8. Some studies stress the adaptive and coping mechanisms that are employed by adult patients.…”

Section: Quality Of Life In Thalassemiasupporting

confidence: 83%

“…This finding is confirmed by other studies concerning thalassemia. [6][7][8] Some studies stress the adaptive and coping mechanisms that are employed by adult patients. One such study from Ferrara concluded that their sample of thalassemia patients scored better than their healthy peers in tests investigating social adjustment, self-esteem, and self-description.…”

Section: Quality Of Life In Thalassemiamentioning

confidence: 99%

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Quality of Life in Thalassemia

Telfer

Constantinidou

Andreou

et al. 2005

Annals of the New York Academy of Sciences

102

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Morbidity and mortality related to thalassemia have been reduced significantly with modern medical treatment, and quality of life (QOL) should now be considered an important index of effective health care. An assessment of QOL differs from other forms of medical assessment in that it focuses on the individuals' own views of their well-being and assesses other aspects of life, giving a more holistic view of well-being. There is very little published work on evaluation of QOL in thalassemia. A suitable tool should be reproducible, sensitive to the major features of the condition that affect patients' lives, and applicable in the range of different cultural, age, and social settings. Such an instrument would be valuable in evaluating new forms of treatment and in comparing health outcomes between different clinics. Two instruments have been assessed, one derived from the WHOQOL-100 questionnaire, and one designed specifically for thalassemia, which assesses psychosocial and clinical burden, as they affect adult patients, parents, and children. Further studies are required to develop and assess such tools for use in thalassemia. Another approach is to seek patients' own views of their routine treatment and the extent to which medical treatment affects QOL. Results from patient questionnaires in the United Kingdom and Cyprus are consistent in finding problems with organization of transfusions, insufficient options with chelation therapy, and poor communication. Practical measures could be taken to address these issues.

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Section: Quality Of Life In Thalassemiasupporting

confidence: 83%

Section: Quality Of Life In Thalassemiamentioning

confidence: 99%

Quality of Life in Thalassemia

Telfer

Constantinidou

Andreou

et al. 2005

Annals of the New York Academy of Sciences

102

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“…Adherence has been related to young people's psychological adjustment to living with thalassemia and its treatment [15,22-24]. From our survey, the limited number of patients receiving support from local organizations suggests that there may be an opportunity to further expand their role.…”

Section: Discussionmentioning

confidence: 96%

An international survey of patients with thalassemia major and their views about sustaining life-long desferrioxamine use

Ward¹,

Jaime

Green³

et al. 2002

BMC Clin Pharmacol

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“…Studies over the past 25 years have shown that prevalence of behavioral disorders among thalassemic children ranged from 23 to 80%,[12–16] and these psychological disturbances adversely affect compliance to treatment in thalassemia. [15] In the present study, it was found that 32% of thalassemic children had clinically abnormal CBCL total scores.…”

Section: Discussionmentioning

confidence: 99%

Study of behavioral problems in multi-transfused thalassemic children

Hongally¹,

Benakappa²,

Reena³

2012

Indian J Psychiatry

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Background:Beta-thalassemia major is a chronic disorder of blood, having an extensive impact on the affected child. It involves lifelong therapeutic regime, with repeated blood transfusions. With improved life expectancy, due to improved medical management psychosocial aspects of thalassemia are gaining importance.Objective:To assess the behavioral problems in multi-transfused thalassemic children and psychosocial factors affecting them.Setting:The study was conducted in a tertiary care level hospital and research institute catering mainly to a population of low socioeconomic status.Design:The study was a cross-sectional study involving 50 multi-transfused thalassemic children of age 5–10 years.Materials and Methods:Fifty multi-transfused thalassemic children, aged 5–10 years, not suffering from any other major medical illness, were included. Child Behavior Check List (Achenbach) (CBCL) was used to collect data from each parent regarding the child's behavior. Parental Attitude Scale (Rangaswamy 1989) was applied. Descriptive statistical analysis was used with analysis of variance (ANOVA) and Student's t test to find the significance of data.Results:The CBCL total scores were high in 32% patients, indicating the presence of behavioral problems. Higher CBCL scores were found in children of older age group, those with poor school performance, whose mothers’ education was more than eighth standard, had history of death of thalassemic relative in family, greater duration of diagnosed illness, poor pre-transfusion hemoglobin level, and who had longer periods of school absenteeism.Conclusions:Behavioral problems are common in multi-transfused thalassemic children. Early diagnosis and intervention of behavioral problems in these children would make them cope with thalassemia better.

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Thalassemic Children's Understanding of Illness: A Study of Cognitive and Emotional Factors

Cited by 18 publications

References 9 publications

Quality of Life in Thalassemia

Quality of Life in Thalassemia

An international survey of patients with thalassemia major and their views about sustaining life-long desferrioxamine use

Study of behavioral problems in multi-transfused thalassemic children

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