Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire / Qualidade de vida em pacientes iranianos com beta-talassemia maior usando o questionario SF-36

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 iron-chelating 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. .

CONTEXTO E OBJETIVO Pacientes com beta-talassemia maior (β-TM) vivenciam problemas físicos, psicológicos e sociais que levam à diminuição da qualidade de vida (QV). O objetivo foi determinar a QV relacionada à saúde e seus determinantes em pacientes com β-TM, utilizando questionário SF-36 (Short Form-36). TIPO DE ESTUDO E LOCAL Estudo transversal no Centro de Hematologia e Pesquisa em Universidade de Ciências Médicas de Shiraz, no sul do Irã. MÉTODOS Foram selecionados aleatoriamente 101 pacientes com β-TM. Após registro demográfico e características da doença, eles foram convidados a preencher o questionário SF-36. A correlação entre fatores clínicos e demográficos com escore de QV foi avaliada. RESULTADOS Havia 44 homens e 57 mulheres, com idade média de 19,52 ± 4,3 (variação 12-38) anos. Em duas escalas, dor (P = 0,041) e aspectos emocionais (P = 0,009), as mulheres apresentaram escores significativamente menores aos dos homens. Menor renda, baixa adesão à terapia quelante de ferro e presença de comorbidades foram correlacionadas com escores SF-36 significativamente menores. Esses fatores foram também considerados determinantes de piores escores de SF-36 em análise multivariada. CONCLUSÕES Mostramos que a presença de complicações da doença, a baixa adesão ao tratamento da terapia quelante de ferro e o baixo status econômico são preditores de pior QV em pacientes com β-TM. Prevenção e manejo adequado das complicações relacionadas com a doença, aumento do conhecimento dos pacientes sobre a importância do gerenciamento de comorbidades e ter maior adesão ao tratamento quelante de ferro, considerando também ...

Growing up with the families of β-thalassaemia major using an accelerated longitudinal design.

Background & objectives: It is difficult for a single investigator to study the psychosocial changes that occur over the life span of an individual affected with a chronic illness like β-thalassaemia major. Therefore, a developmental epidemiological perspective is required to understand the chain of events and problems of psychological nature. We aimed to construct the picture of developmental epidemiology for psychosocial aspects in families of β-thalassaemia major patients attending a tertiary care hospital in north India. Methods: The accelerated longitudinal design was used. The sample consisted of 100 children with β-thalassaemia and their 150 parents, both groups were subdivided further so that each group represented the continuum of longitudinal course. The sampling was done for a period of 16 months from January 2004 to April 2005. Results: Overall 54 per cent of children had significant psychopathology. Within the parents groups, 10 per cent had adjustment disorder, 33.3 per cent depressive disorder, and 10 per cent had anxiety disorder and 11 per cent somatoform disorder; 95 per cent of the parents of newly diagnosed children expressed feeling of dazed and shock, fear of death, hopelessness, separation anxiety and problems with their memory and concentration. There was significant difference only in the domain of psychological health in all the three groups of parents with respect to the quality of life. Among children, quality of life improved with their progression of illness. Growing up with β-thalassaemic family was analyzed. Interpretation & conclusions: The developmental epidemiological perspective was constructed in β -thalassaemic children and their family using an accelerated longitudinal design. Such a design can test the hypothesized aetiological or developmental function of a targeted risk factor within a developmental path and may be used in studying the psychological impact of even other chronic illnesses over the life span of an individual for conceptual and holistic understanding.

[Mental health status of beta-thalassemia major in Mazandaran Province in 2006]

Beta-thalassemia major [TM], a chronic, genetically determined hematological disorder, has received little investigation on the psychological aspects of the disease and the psychosocial adjustment of patients with this anemia. In the present study, the aim was to explore the nature of psychopathology according to age, sex, school performance, severity and complications of the disease in TM patients. A Cross-section descriptive study was conducted at the 14-Thalassemia Unit of different hospitals of Mazandaran province Iran in 2006,. Psychological aspects were evaluated by the Persian version of symptoms checklist-90-revised questionnaire. Information on relevant demographic characteristics, school performance, severity and complications of the disease was collected by one of the investigators who created the questionnaire. Analysis of data was done by Chi square method, t test and one way ANOVA. 687 [41.08%] of the 1672 eligible patients with TM completed the questionnaires. The mean age of the participations was 21.93 +/- 5.90 years and with a range of 15-45 years. 363 [52.8%] were female, 602 [6.87%] were single, 465 [67.7%] had not higher educational level. In our study, 446 [64.9%] of TM patients had GSI > 0.7 as psychiatric patients, 141 [20.5%] had GSI between 0.4 to 0.7 as suspected psychiatric patients, and 100 [14.6%] had GSI < 0.4 as non-psychiatric patients. These findings show that beta-thalassemia major patients are at risk for psychiatric symptomatology and need appropriated psychiatric consults

[ effects of group therapy on mental health condition in mothers of thalassemic patients]

Thalassemia is the most common hereditary chronic anemia in human. It causes terrible effects on psychological health condition of family members, especially mothers. Due to the advantages and a very few side effects of group therapy, the current study aimed at determining the effects of group therapy on mental health condition of the thalassemic patients' mothers. A clinical trial was conducted on 60 mothers of thalassemic patients in Hajar hospital of Shahrekord medical university and Seieed Al Shohada hospital in Farsan. At the beginning of the study all mothers were administered a demographic and mental health questionnaire [GHQ28] and among those who scored higher than 23, were randomly designated to the experimental and control groups. In the treatment period of the study the participants in the experimental group attended 8 weekly sessions of group therapy. Data were analyzed using ANOVA, t-test, paired t-test, and Pearson Correlation. Before the experiment there was no significant difference between the two groups of subjects in both questionnaires in all dimensions [P>0.05]. After the treatment period a significant difference was observed between the two groups in all dimensions of mental health [P<0.05]. The results also showed that there was no correlation between demographic variables and mental health conditions. The results of this study showed that group therapy has a considerable positive effect on recovery and improvement of mental health of mothers of the chronic patients, like thalassemia in all dimensions

Psychosocial burden in thalassemia.

OBJECTIVE: To study the psychosocial life aspects of Indian adolescents suffering from transfusion dependent beta-thalassemia major. Earlier studies done in Italy, Greece and United Kingdom reported the presence of psychosocial burden associated with the disease. We aimed to determine the presence of disease burden in the psychosocial life aspects of Indian adolescents affected with thalassemia. METHODS: Structured interviews were carried out with each of the subjects using a schedule which contained questions relating to perceived burden of thalassemia in the various psychosocial life aspects of affected adolescents. RESULTS: Adverse impact of thalassemia was perceived in the domains of education (70%) and sports (72%). Most thalassemics were not satisfied with their body image. Almost all the study subjects felt that the disease did not affect their family or social relationships. The adolescents were anxious about their future health and education. Majority of the subjects (80%) did not discuss about their disease and its related problems with their friends. They mainly depended on their parents for monetary and emotional support. CONCLUSION: There is tremendous psychosocial disease burden perceived by the affected adolescents and hence it is imperative to ameliorate it by promoting a clear understanding of the disease and initiating intervention programs.

Psychosocial problems in children with thalassemia and their siblings.

Beta-thalassemia is a chronic illness causing serious symptoms to children and a burden to families. The purpose of this study was to evaluate psychosocial problems in children with thalassemia and their siblings by using a semi-structured interview and the Pediatric Symptom Checklist (PSC). The study sample included 82 children with thalassemia, 20 siblings, and 50 control children without a chronic illness. With children and families demographically controlled, psychosocial problems were significantly more common in children with thalassemia than in those without chronic illness, 28.05 per cent vs 4 per cent (p=0.001), but there was no difference between siblings and the controls, 5 per cent vs 4 per cent (p=0.64). The mean PSC score in children with thalassemia was higher than that in the sibling and control group (18.34 vs 10.95 and 10.28, respectively; p<0.001). These findings suggest an increased risk of psychosocial problems in children with thalassemia that psychosocial intervention may be required to prevent major psychiatric disorders.