REVIEW OF LITERATURE
Health care is facing drastic changes. Relevant literature refers to those that are sources important in proving in depth knowledge needed to make changes in practice or to strengthen the present study in order to lay down the foundation which helps to reveal the prevailing situation of the similar studies in different areas.
A cross-sectional survey was conducted in three hospitals in Thailand during June to November 2006. Peds Quality of Life 4.0 Scale (Thai version) was used to assess Health Related Quality Of Life in 315 thalassemia patients between age group of 5 and 18 years. Related clinical characteristics of the patients were collected through medical record review. The mean (SD) of the total summary score was 76.67 (11.40), while the means for the Physical Health Summary score and Psychosocial Health Summary score were 78.24 (14.77) and 75.54 (12.76) respectively. The school functioning scored the lowest, with a mean of 67.89 (SD = 15.92). The following factors significantly affected the Health related Quality of life of the patients: age; onset of anemia and also age at first transfusion; pre-transfusion hemoglobin (Hb) level; receiving blood transfusion during the previous three months and severity of the disease. It was found iron chelation therapy had a significant effect on Health Related Quality of life in the school functioning subscale negatively. In contrast, serum feritin level, frequency of blood transfusions per year, and gender were not significantly related to HRQOL among these patients. Multivariate analysis were used to confirme these findings. (Montarat, 2010)
A cross sectional study was conducted for 142 beta thalassemia children of three years or more receiving regular blood transfusions at a transfusion centre in western India from 1st April to 30th June 2009.Out of 142 children 68% had poor physical domain, 30 children had poor quality of life in psychological domain, 20 children have poor environment domain and 28 had social domain. (Neeraj, 2010)
A cross-sectional study was conducted for 112 transfusion dependent thalassemia patients at two hospitals in Kuala Lumpur, Malaysia, in 2005. Quality of life scores were measured by using the translated Short Form-36 questionnaires. The diseases related to iron overload complications were obtained from the medical records. The data regarding the use of desferoxamine was found through interviews and validated by drug records. Quality adjusted life years were formulated from residual life years and quality of life scores. QALYs were higher in 54(48 percent) and 58 (52 percent) patients on optimum desferrioxamine(9.04,2.46) than patients on sub-optimum desferrioxamine (5.12, SD 2.51). There was an association between the level of serum ferritin, iron overload complications and total family income. The use of optimum desferrioxamine reduces iron overload complications and also provides a better quality of life (Dahlui M, 2009)
A comparative study was conducted in Japan for 28 children with thalassemia and 34 healthy children to find out the adverse emotional effects on child and family to investigate psychiatric state and behavioral problems in children with thalassemia. This study showed psychiatric illness found more in thalassemic children when compared to healthy children. Anxiety disorders were found in 30%,depression disorder in 15%.attention problems and social problems. Peer relations and educational success were also compared with control group. Thalassemia children had increased risk of psycho pathology (Burcu , 2008)
A cross sectional descriptive study was done in Mofid children’s hospital,California for 121 children with thalassemia who were on regular blood transfusions. This study was conducted with eq-5d. In this study the mobility, self care, usual activities , pain and discomfort were assessed. About 60% children had problems with their usual activities. About 12% suffered with pain, 15% with mobility and about 11% suffered with self care activities(Bibi Shahin,2008) .
A cross sectional study was done for 80 patients between the age group between 5 to 17 children. This study was conducted in Tehran university. This study was done with the help of Short Form 36 scale .They concluded that more than 50% of children had poor quality of life.(Afshin,2008)
An assessment was done in Colombo for 147 thalassemia patients which included adolescents between 16 to 18 years inorder to assess self image ,quality of life and ways of coping. Three interviews were conducted with psychological test, 36 health survey questionnaire, Machover’s test and symptom check list with 90 revised items. Psychological aspects, psychiatric disorders were assessed and found that more than 70% children were affected with psycho social problems.(Messina,2008)
A assessment was conducted in Persia for Iranian patients with thalassemia major using Short Form Health Survey 36 scale by a standard forward backward translation procedure, the English language version of the questionnaire was translated into Persian. Two hundred patients with thalassemia major following up at the Thalassemia Center, Dastgheib Hospital, Shiraz, Iran, were enrolled in this study. The mean age of 200 subjects enrolled in the study was 19.81+/-4.07 years. Most of the patients were in lower range of normal for both mental and physical summary status. The study showed that about 62% of the patients had poor quality of life and about 30% had average quality and remaining only 80% had good quality of life (Jafari H, Lahsarizadeh S, 2008)
Structured interviews were carried out with fifty samples in Chandigarh in Nehru hospital with each of the subjects using a schedule which has quality related questions of psychological life aspects in affected adolescents. Adverse impact of thalassemia was perceived in the domains of education (70%) and sports (72%). This study has shown that there was tremendous psychosocial burden in adolescents (Khurana, 2008)
A descriptive study was conducted in Western India showed that thalassemia minor is not life threatening on its own, can affect the quality of life because of the effect of anemia, this study also revealed that thalassemia minor often exists with other diseases such as asthma (Yaish,2008)
A prospective assessment study was done in middle eastern countries for 28 thalassemia children in the age group 5 to 18 years to know whether the quality of life can be improved by hematopoietic stem cell transplantation. This study was concluded by using child self and parent proxy reports. The Peds QOL 4.0 generic core scales were administered to patients and their parents one month before and 3,6,18 months this study. Results revealed that improved quality of life found in children after Hematopoietic stem cell transplantation. (Caocci G,et al.,2007)
A cohort study was conducted in England for adolescent age group from 16 to 17 years to find out emotional problems for 4524 participants. This study extended for 20 years using a 12 item general health questionnaire reported depression and anxiety seen in thalassemia children (Stephan, 2007)
A cross sectional study done in a thalassemia blood transfusion organization outpatient clinic for 200 beta thalassemia patients to determine the association of physical and mental health with the help of short form 36 survey in nTehran,Iran. Findings revealed that somatic comorbidities and physical health are positively associated.(Azita,2007)
A case control study was conducted in China for sixty children of 5 to 15 years. They performed semi structured interview and gave questionnaire of pediatric symptom checklist and childhood psychopathology measurement schedule. This was used to assess psychosocial morbidity. Children with thalassemia had significantly higher social morbidity. (Saini, 2007)
A cross sectional study was conducted for 292 adolescents between 14 to 18 years of age in Heijibeji for their anxiety and depression symptoms with health related quality of life and sleep quality in patients with beta thalassemia. Mental and physical scores were predicted by symptoms of depression, somatic co morbidities. About 80 children had problems of somatic illness and thirty participants had depression. (Onur, 2006)
A comparative study was done for 96 thalassemic and 235 normal children in Kuala Lumpur.The mean age of thalassemia children was 11.9 and of normal healthy children was 13.2 years. The instrument used for the study was Pediatric Quality Of Life 4.0 generic scale. Physical, emotional , social and school functioning assessment were done for the children and indicated thalassemia children had lower quality of life than healthy children(Ismail,2006)
A descriptive study was conducted to assess the quality of life and psychological problems in children with thalassemia in National health and neurosciences, Bangalore with thirty nine children coming under the age group of 8 to 16years with transfusion dependent thalassemia attending day care centers for blood transfusions were assessed for psychological problems using a childhood psychopathological measurement schedule and quality of life was assessed using eq-5d.49% of children had psychological problems and 74% of children had poor quality of life. Anxiety related symptoms (67%), emotional problems, particularly depression (62%) and conduct problems (49%) were the main findings. Due to severe difficulties in pain/discomfort (64%) and mobility problems (33%) children had impaired quality of life. The side effects of chelation was showed as an independent predictor of psychological problems and impaired quality of life and similarly psychological problems were a significant predictor of impaired quality of life. (Shaligram D, Grimaji S, 2006)
A study was conducted by distributing questionnaires to 294 mothers of thalassemia children. This study was done in Sydney, Australia. In this first part interviews with 22 questions ,2nd part was a Beck’s inventory on assessment of emotional functioning with 21 questions. The quality of children was assessed and found that about 30% of children had poor quality of life.(Osborne,2006)
A cross sectional study was conducted in children’s hospital and research center, Oakland, California to find out the QOL in transfusion-independent patients with thalassemia (non-Tx) and transfused patients (Tx) and to identify the factors that affect QOL in thalassemia. Sample size was 48 in number (29 Tx and 19 non-Tx).Their mean age was 14.6 years (SD = 7.5 years) and with the help of Information Chart System questionnaire. Patients were rated excellent (1) to poor (5) on five dimensions of health status. Scores of 4 or 5 represented limitations and these results were concluded by brief medical history and also chart review. 41% percent of Tx patients and 47% of non-Tx patients revealed severe impairements in 1-6 and 1-2 domains, respectively. The mostly affected domains were feelings such as anxiety, depression, and concern of overall health status . Transfusion-independent thalassemia patients suffer serious impairment in QOL and recommendations were made for all patients with thalassemia who underwent QOL assessment and interventions could be focused on affected domains. (Pakbaz Z,et al.,2005)
A comparative study was conducted in Italy for 28 beta thalassemia major and 28 healthy children in the age group 13 to 15years, focusing on behavior, mood and temperamental characteristics. They were assessed using child behaviour check list , children’s depression inventory , multi dimensional anxiety scale for children and emotionality, activity , sociability and shyness scale. 90% of beta thalassemia children showed increased somatic complaints ,physical complaints and separation panic, high emotionality and poor sociability.(Luigi, et al.,2005)
A descriptive was conducted in Pakistan for 100 children with beta thalassemia between the age group of 10 -18 years. They did the study by using a psychopathology scale and concluded that about 54% of children were referred for significant psychopathology for they had problems with psychological aspects.(Praveen ,2005)
The descriptive study was conducted in Sir Ganga Ram Hospital assessed the Quality of Life for 26 children with thalassemia major on regular blood transfusion, registered with Thalassemia unit by using 85 item Thalassemia Quality of life questionnaire. This questionnaire covered five domains: disease and symptoms, physical, psychological, social and cognitive fields the quality of life was assessed by the help of patient’s response in each domain. Overall Quality of Life given as percentage of desired quality of life score. Overall quality of life (QOL) was affected (<90%) in 88% of patients and severely affected (<70%) in only 15% of patients. QOL assessed in each domain showed that in disease and symptom domain 96% had QOL<90%, in physical domain 70% had QOL<90%, in psychological domain 81% had QOL<90%, in social domain 81% had QOL <90% and in cognitive domain 65% had QOL<90% .QOL for each child was given as a summary score between 0% (worst QOL) and 100% (best possible QOL). Each child himself acted as a control for his best possible QOL desired at that point of life according to his understanding and development (Sachdeva, Yadav,2002)
An assessment study to assess the reliability and validity of Pediatric Quality of Life Inventory. This study was done in Children’s Hospital and Health center, San Diego, California for children and adolescents from age group of 2 to 18 years. The tool was given to 963 children and 1629 parents. The item scale and scale level of the tool was measured. The findings were revealed as internal consistency of total score as alpha, 0.88 for child and 0.90 for parent.The reliability and validity of the tool was done to find consistency of physical and psychological health summary and the score. The end results revealed that this tool was most applicable for clinical trials, clinical practice , research, school settings and also community populations. (Varni JW, et al.,2001)
A cross sectional study was conducted in Italy for twenty children.12 girls and 8 boys, average age was 13.8(7 to 18 years).Performed physical and loco motor system examinations. There was poor quality of life for three girls and two boys. (Sivri, 1999)
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