QUALITY OF LIFE OF THALASSEMIC CHILDREN VISITING THALASSEMIA UNIT OF A SELECTED TERTIARY HOSPITAL, LUDHIANA, PUNJAB.

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1 QUALITY OF LIFE OF THALASSEMIC CHILDREN VISITING THALASSEMIA UNIT OF A SELECTED TERTIARY HOSPITAL, LUDHIANA, PUNJAB. Rupinder Deol*, Arshdeep Kaur**, Dr.Praveen C Sobti*** *AIIMS Rishikesh;** RN USA; ***Christian Medical College & Hospital, Ludhiana ABSTRACT Thalassemia is a chronic hereditary disease in which patients present with anemia during their first year of life. This study was carried out to assess the Quality of life of thalassemic children by using PedsQL generic core scale which measures four domains like physical functioning, emotional functioning, social functioning and school functioning. The study setting was thalassemia unit of DMC & Hospital, Ludhiana, Punjab and the study sample comprised of 60 thalassemic children between 5-15 years age selected by convenience sampling technique. PedsQLTM generic core scale (Parent Proxy report) was used to assess the quality of life of thalassemic children. The study findings revealed that 63.33% of thalassemic children had good quality of life whereas 26.67% of thalassemic children had an average quality of life and 10.0% had poor quality of life. The most affected domain of quality of life was school functioning and least affected domain was social functioning. Key words: Quality of life, thalassemia, Peds QL scale, Thalassemia unit. Introduction Thalassemia is a global public health problem with an estimated 900,000 babies with this disorder expected to be born during the next 20 years. In India, each year 8000 children with thalassemia are born, accounting for about 10% of the annual world incidence. In Punjab, one out of every 20 people is having thalassemia trait. The incidence of thalassemia is rapidly increasing. Children with thalassemia need blood transfusion for survival every 2-4 weeks. All the activities are altered among children with thalassemia. They are unable to perform daily activities. Few children may have sleeping problems, academic disturbances, impaired physical functioning. Impaired physical functioning results in perceived increase in low self- esteem and low self - concept. The most commonly affected domains among children with thalassemia are feelings of depression, anxiety, psychological problems, emotional burden, hopelessness, difficulty with social integration and school problems. Family members also face problems like sadness, disappointment, hopelessness, stress, depression and anxiety about their child s life. The assessment of quality of life in thalassemic children and their family members are important in order to determine actions to be taken to improve the quality of life. It is important to understand more about quality of life in pediatric population to evaluate and improve the care these children receive. Children with thalassemia are vulnerable to emotional and behavioral problems. A better understanding of the factors associated with health related quality of life among children with thalassemia could have a direct effect on the development of more suitable clinical counselling and social support programs to enhance treatment outcomes, especially in terms of health related quality of life of children with thalassemia. Materials & Methods A descriptive research design was used to assess the quality of life of thalassemic children visiting thalassemia unit of DMC & Hospital, Ludhiana, Punjab.The total number of 60 children between the age of 5-15 years fulfilling the inclusion and exclusion criteria were selected by convenience sampling technique. Basic socio-demographic profile of the thalassemia children was collected. Data related to the disease profile of the children was also collected. Pediatric Quality of Life Inventory (PedsQL scale parent proxy) by JW Varni, 1998 was used to assess quality of life on the basis of parent report. Validity and reliability of the tool was determined. A written permission was taken from the Principal, College of Nursing and Head of Department of Pediatrics as 19

2 well as from the Incharge of Pediatric Hematology and Oncology unit of DMC & Hospital, Ludhiana, Punjab. The study was done after approval from the ethics committee of DMC & Hospital, Ludhiana. An informed written consent was taken from the parents of thalassemic children for participation in the study. Descriptive and inferential statistics was used for analysis. Results As per the socio-demographic characteristics, 30(50%) of the thalassemic children belonged to age group of 5-10 years while another 30(50%) belonged to age group of years. From the total sample, slightly less than two third of thalassemic children 38(63.33%) were male while slightly more than one third 22(36.67%) were females. As per the education, more than half 33(55%) children had education upto primary level while, one third 20(33.3%) had education upto middle and only 7(11.67%) had education upto secondary level. As per habitat, 46 (76.67%) of subjects were from urban area while 14(23.33%) belonged to rural area. From the total sample, 31(51.67%) were from nuclear family and 29(48.33%) were from joint family. Most of the mothers of thalassemic children 48(80.00%) were housewives and very few 12(20.00%) were doing job. Table 1: Distribution of thalassemic children as per their disease profile. Variables Age at Diagnosis (In years) < Ferritin levels (ng/ml) >4000 Frequency of packed cells given (per month) Once Twice Thrice Duration of Iron Chelation Therapy (Years) f(%) 50 (83.33) 10 (16.67) 29 (48.33) 24 (40.33) 06 (10.33) 01 (1.67) 20 (33.33) 37 (61.67) 03 (5.00) 14 (23.33) 39 (65.00) 07 (11.67) N=60 As per health status of siblings, majority of siblings of thalassemic children 57 (95%) were healthy and very few 3 (5.0%) siblings were diagnosed with thalassemia. Table 2 Quality of Life of Thallasemic Children N=60 Quality of Life QOL score f % Good Average Poor Very Poor Maximum score = 2300; Minimum score = 0; Higher the score better the quality of life. Table 3: Mean score of quality of life of thalassemic children as per specific domains of quality of life. N=60 Domains of Maximum Mean + SD Mean % Rank Order Quality of Life Score Social Functioning ± Emotional Functioning ± Physical Functioning ± School Functioning ± *Higher the score better the quality of life Table 3 shows that the mean percentage for social functioning (82.00%) was highest followed by emotional functioning (80.00%), physical functioning (74.22%) and school (59.00%) functioning respectively. Therefore, it can be concluded that children with 20

3 thalassemia had better quality of life in terms of social functioning. Most affected domain is school functioning among thalassemic children. Table 4: Mean quality of life score of psychosocial and physical health summary. Quality of Life Mean + SD Mean % Rank Order Domain Psychosocial Health 1105 ± Physical Health ± Maximum score for psychosocial health = 1500, Minimum score = 0 Maximum score for physical health = 800, Minimum score = 0 Figure 1 Distribution of problems in physical functioning parameters among thallasemic children. 21

4 Figure 2 Distribution of problems in emotional functioning parameters among thallasemic children. Figure 3 Distribution of problems in social functioning parameters among children with thalassemia. 22

5 Figure 4 Distribution of problems in school functioning parameters among children with thalassemia. No significant association was found between quality of life and age, gender, education of child and parents, habitat, religion and occupation of parents (p>0.05). Statistically significant association was found between socio-economic status and quality of life (p= 0.020). It is further inferred that thalassemic children belonging to Upper class (I) and Upper middle class had higher mean percentage score of quality of life (70.86% & 78.52% respectively) as compared to children with Lower middle class(iii) &Upper lower class IV (64.26% & 60.65%) respectively. A statistically significant association was found between quality of life of thalassemic children & frequency of packed cells given (per month) (p<0.05). Children who received packed cells only once a month had higher quality of life mean score ( ± ) as compared to children who received packed cells twice ( ± ) or thrice ( ± ) a month. Hence, it is inferred that thalassemic children who required less number of transfusions has better quality of life. Discussion Results revealed that 38 (63.33%) of thalassemic children had good quality of life where as nearly one fourth 16(26.7%) of thalassemic children had an average quality of life. About 6(10.0%) of thalassemic children had poor quality of life. The mean percentage was highest in social functioning (82.00%) domain, followed by emotional functioning (80.00%), physical functioning (74.22%) and school functioning (59.00%) respectively. The most affected domain was school functioning with mean score of ± and least affected domain was social functioning.as supported by Masyitah SW. (2011) who conducted a study to assess and compare the quality of life of children between the age of 5-18 years suffering with thalassemia and their siblings in Indonesia. Total 118 children were selected with purposive sampling technique with 59 children in each group. The study results revealed that children with thalassemia have poorer quality of life compared to their normal siblings, with school functioning being the most affected domain functioning with a mean score of ± Conclusion Slightly less than two third 38(63.33%) of thalassemic children had good quality of life where as one fourth, 16(26.7%) of thalassemic children had an average quality of life. Very few, 6(10.0%) of thalassemic children had poor quality of life. Association of quality of life with socio economic status and with number of transfusions per month was found to be statistically significant (p< 0.05). The most affected domain was school functioning with mean percentage of 59% and least affected domain was social functioning with mean percentage of 82%. Psycho Social health summary score (1105±217.69) with mean percentage of 48.04% and physical health summary score (593.75±170.15) with mean percentage of 25.81%. 23

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