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1 International Journal of Health Sciences and Research www.ijhsr.org 9571 ISSN: 2249 - Review Article Associated Factors among Health Related Quality of Life and It ’s en: a Review Thalassemic Childr 1 2 , Dr. Padmaja A Kavitha K 1 Research Scholar, Professor, Dept. of Child Health Nursing, B.L.D.E.A’s Shri B.M.Patil Institute of Nursing Sciences, Vijayapur, Karnataka, India 2 Professor/ Vice Principal, SVIMS College of Nursing, Thirupati, An drapradesh, India Corresponding Author Kavitha K : ABSTRACT Thalassemia is a group of hemoglobinopathies characterized by defect in hemoglobin synthesis. It is iron chelation chronic disease, where the patients should undergo regular blood transfusion and take to maintain their health status. The authors aimed to bring the comprehensive view of overall health related quality of life and find out the various factors associated with their quality of life. The findings that all the domains of health related quality of life is been affected. The from various studies revealed most common factors which had impact on QoL include chelation therapy, repeated hospitalization, educational status of parents and financial factors. thalassemia, hea Key words: lth related quality of life, factors, chelation therapy The level of HRQoL of thalassemic INTRODUCTION children is influenced by so many factors. an Thalassemia is autosomal There are innumerous studies undertaken recessive disorder characterized by defect in synthesis of hemoglobin which leads to throughout the world to assess the impact of [ 1 ] destruction of red blood cells thalassemia on the quality of life (qol) . The Chil dren with beta thalassemia Major need among the patie nts and the factors which to undergo repeated blood transfusion promote or hinder the quality of life. The throughout their life due to ineffective purpose of this review article is to present ] [ 2 erythropoiesis. From the detection of first the overall scenario of health related quality case of thalassemia to the recent advances in of life and its associated factors among ment, the perception thalassemic children. therapeutic manage treatment and diagnostic the about modalities for this life debilitating disorder METHOD OF REVIEW has been drastically changed over the years. Sources of Li terature review But still, whatever intervention, no matter In - depth literature review was done using printed sources such as books and journals how simple it looks, may alter the level of scholar, PubMed Google as well as ty of Life (HRQoL) Health Related Quali and among various websites. children. Problems halassemic t associated with disease condition and blood Criteria for selection of studies: The authors used the following criteria for transfusion and other factors results in poor selection of studie s for review: physical and emotional health, disturbed social functions and absent from school or 3 [ ] . oling inability to continue scho International Journal of Health Sciences & Research (www.ijhsr.org) 386 2019 Vol.9; Issue: 5; May

2 Kavitha K et.al. Health Related Quality of Life and Its Associated Factors among Thal assemic Children: A Review ] 6 [ . participants In another study, emotional Studies related to health related quality  functioning and the school functioning of life among children with beta scores were less. School absentism for thalassemia major hospital visits as well as low energy level Studies which have used cross sectional,  for performing sch ool activities had a exploratory research designs (in order to negative impact on the children’s HRQoL . understand the existing condition) [ 7 ] of life  Comparative studies on quality An analytical study on psychological among beta thalassemic children Vs problems and quality of life in thalassemic normal counterparts children revealed that 44% of children had Total of 17 studies which met the criteria psychological problems and 74% had poor were selected for review. Among which 5 quality of life. This impairment in QoL was studies were related to assessment of health found to be due severe difficulties in related quality of life; 4 studies were about pain/discomfort dimension (64%), followed ity of life of thalassemic comparison of qual by depression and mobility problems of children with their normal counterparts and [ 8 ] . equal severity (33%) Presence of remaining 8 studies focused on factors thalassemia as a chronic d isorder had influencing health related quality of life negative impact on perceived physical, among thalassemic children. emotional, social and school functioning of school age children. As per the self report RESULTS and parent proxy report, emotional Results of the review are presented functioning domain was the most affected. quality of life under following headings: 1) There was also an association between assemia; 2) of children with beta thal 9 [ ] . mpliance and quality of life co comparison between QoL of life among 2. comparison between QoL of life thalassemic children and the normal among thalassemic children and the children of same age group and 3) factors normal children of same age group associated with quality of life of thalassemic On comparison with the normal siblings, the children. overall qol is less in thalassemic children 1. quality of life of children wi th beta and th e school functioning is the most thalassemia; [ ] 10 affected parameter Also, the level of qol . Kaheni S et.al noted that quality of life of is found to be less among thalassemic children with beta thalassemia major was QoL children when compare to of children above average in dimensions such as with other mild illnesses. Majority (80%) of physical health, psychological health and thalassemic children had the feeling that environmental health. But, qol score was they could not do activities like their in dimension found to be less than average ] 11 [ [ 4 ] When compare to normal friends . Similarly, a of social relationship . healthy children, physical functioning, longitudinal study on qol of βthalassemic social functioning and school functioning of children in Chandigarh, India revealed that thalassemic children was low. The total the most affected domain was social QoL score was 68.91 in thalassemic nctioning. However the overall QoL fu children whereas healthy controls had found to be improved with progression of ] [ 12 5 [ ] scored 79.79 . illness . But, Ismail M e t.al mentioned that A case control survey on assessment in all th e mean total summary scores of QoL of QoL of thalassemia patients revealed that four dimensions of health were found to be mean physical, emotional, social and school in less thalassemic children and adolescents. scores performance as well as overall QoL - transfusion Hb, They argued that pre were decreased when compared to the frequency of blood transfusion and healthy controls. There was a difference chelation therapy were the main predictors in HRQoL score among the study 387 International Journal of Health Sciences & Research (www.ijhsr.org) 2019 Vol.9; Issue: 5; May

3 Kavitha K et.al. Health Related Quality of Life and Its Associated Factors among Thal assemic Children: A Review It was also noted that delay in scores of young thalassemic QoL between [ 13 ] starting of iron chelation therapy found to children and older ones . have negative impact on HR QoL of Factors associated with quality of life 3. [ 17 ] thalassemic children . of thalassemic child ren Thavomcharoensap M et.al in their A study on “Better understanding of study on “Factors affecting quality of life in Health Related Quality of life in Tai children with thalassemia” identified the Thalassemia patients treated by Iron following factors as significant which may chelation therapy” identified several factors influence quality of thalassemic children. which influences HRQoL of thalassemic They are age of child during onset of chil dren. The availability of oral iron chelation medicine was found to be the first - isease, age at first transfusion, pre d transfusion hemoglobin level, and number factor which influences HQoL of these children. It was argued that if there is of blood transfusions during the past three availability of drug, all patients can became months, severity of disease and iron [ 7 ] . more complaint with the chelation therapy. chelation therapy But, other factors such as serum ferritin leve l, frequency of blood tion, it was also noted that health In addi transfusion per year, gender of the child are education programs enhanced the awareness disease about among condition not significantly associated with the overall the functioning score of patients. The study thalassemic children and their parents. So that they became more involved in social findings confirmed the importance of networks which had positive effect on maintaining pre - transfusion hemoglobin level of at least 9 . Hence, the study ms/dl in order to 10.5g - children’s functioning improve the overall quality of life among findings also recommended that thalassemic children should thalassemic patients. In addition, it was undergo periodic assessment of quality of life. In addition, recommended to provide special care to especially intervention children with severe conditions as well as programmes psychological support need to be planned those who are receiving iron chelation ] 18 [ s for support of patients and their familie . e. therapy through subcutaneous rout Various other factors which affect Dhirar N, Khandekar J, Bachani D, the quality of life of thalassemic children Mahto D conducted a descriptive cross include family income, family history of sectional study to assess the quality of life among thalassemia. Mainly, children’s poor children suffering with thalassemia physical functioning was associated with Major. The sample consisted of 241children f 2 to 18 years receiving in the age group o low family income and poor adherence to up. treatment and care at tertiary level children’s hospital in f ollow However thalassemic children’s educational status Delhi. The study revealed that the overall [ 14 ] quality of life score was low among the . increased their school functionality Factors like age of patient, educational level study participants and emotional domain was the most affected. The findings also of patient’s parents, serum ferritin level and ad were factors are correlated complications due to iron overlo found the following significantly associated with physical with the quality of life scores: 1) functioning, overall quality of life and thalassemic children who have other co - morbidities were having poor quality of quality adjusted life years of children with [ 15 ] scores when compared with those who were thalassemia . Factors such as Information about not having any other conditions. Physical the disease condition and family history of re health and psychological domains we thalassemia a also significant had severely affected by co morbidities. 2) Children receiving oral iron chelatros had association with all domains of quality of higher QoL scores than those who were life among school age thalassemic children. ] 16 [ taking both oral and subcutaneous therapy. International Journal of Health Sciences & Research (www.ijhsr.org) 388 Vol.9; Issue: 5; May 2019

4 Kavitha K et.al. Health Related Quality of Life and Its Associated Factors among Thal assemic Children: A Review REFERENCES The painful injection significantly affected Wilson D. Wong’s 1. Hockenberry M.J, the psychosocial health. 4) Increased th edition, Essentials of Pediatric Nursing. 8 freque ncy of blood transfusion per month New Delhi: Elsevier India Pvt Ltd; 2011; and more frequent visit to the hospital had 4 - 923 negative impact on physical, psychosocial 2. Lakshmanaswamy A. Clinical Pediatrics and school activities domains of quality of th history taking and case discussion. 4 life in these children. 5) Traveling, painful edition, Haryana: Wolters Kluwer; 2017; diagnostic and therapeutic procedures, free 656 62 - h ealth care services were the other major Khani H, Majdi M, Aza 3. dmarzabadi E, factors had profound impact on overall Montazeri A, Ghorbani A, et al. Quality of 19 [ ] . quality of life among this group - thalassemia major life in Iranian Beta patients of Southern coastwise of the The frequent visit to health care Caspian Sea. Behavioral Sciences. 2009; 2: facility was one of the main factors for poor 332. - 325 qol score in school functionin g of children 4. Kaheni S, Yaghobian M, Sharefzadah GH, with thalassemia major. Also, qol of a lity of Life Qu Vahidi A, Ghorbani H, et al. thalassemic children was substantially Thalassemia Major at - in Children with Β influenced by many other factors such as Center for Special Diseases. Iran J Ped impact of having chronic illness, body Hematol Oncol. 2013; 3: 108 - 113. image disturbance, subcutaneous iron 5. Khaikar P, Malhotra S, Marwaha R. complications therapy, chelation and Growing up with families of β thalassemia uncertainty about their future . importantly major using an accelerated longitudinal ] 20 [ design. Indian Journal of Med Res. 2010; - Oct: 428 37 Ismail M, Chun C.Y, Shahar S, Abudul 6. CONCLUSION Manaf Z, Rajikan R, Mohd Yusoff N.A, The literature reviews related to Jamal A.R. Quality of life among thalasemia health related quality of life and associated children, adolescent and their care givers. factors shows that overall quality of life - Sais Malaysiana. 2013; 42 (3): 373 80. among children with beta thalassemia major 7. K, Torcharus M, Thavorncharoensa p was found to be less. However there are Nuchprayoon I, Riewpaiboon A, Indraratna variations in type of domain/ dimension K.. Factors affecting health related quality affected from one study to another. Also of life in Thai children with Thalassemia. there were so many factors found to have BMC Blood Disord. 2010; 10: 1 - 10 impact on quality of life like frequent Shaligram D, Girimaji S.C, Chaturvedi S.K. 8. Quality of life issues in caregi vers of hospital visits, therapeutic procedures, Youngsters with thalassemia. Indian J economic burden etc. - socio but there was a 8 - Pediatrics. 2007 Mar; 74 (3): 275 contradictory between the factors identified 9. Dakhakhny M.A, Hesham A.M, Mohamed in above studies. However, frequent E.S, Mohamed N.F. Quality of life of school hospitalization and chelation therapy were age Thalassemic children at Zagazig city. J QoL of common factors which influence 97 - of American Science. 2012; 7 (1):186 thalassemic patients in majority of the 10. Wahyuni S. M, Ali M, Rosdiana N, Lubis B. studies. Quality of life assessment of children with The variation in quality of life scores Thalassemia. Pediatrica Indonesia. 2011 and influencing factors in various studies May; 51 (3): 163 68. - may be due to different types of tools and . Assessment of health related Mutsher 11. - quality of life upon school age children ( 6 techniques and analytical procedures used - 12) with Thalassemia. Thi Qar Medical by different researchers apart from study - 108 Journal, August 5 (2): 100 demographic characteristics. participants’ Ismail A, Cambell M.J, Ibrahim M.H, Jone 12. G.L. Health related quality of life in Malasian children with Thalassemia. 2006 8 - 4(39): 1 389 International Journal of Health Sciences & Research (www.ijhsr.org) 2019 Vol.9; Issue: 5; May

5 Kavitha K et.al. Health Related Quality of Life and Its Associated Factors among Thal assemic Children: A Review Hakeem A.G.L, Mousa S.O, Moustafa A N, 13. Health related quality of life in Middle Eastern children with beta - thalassemia. Mahgoob M.H, Hassan E.E. Health - related BMC Blood disorders. 2012 12:6. Retrieved quality of l ife in pediatric and adolescent - dependent β from - http://www.biomedcentral.com/1471 patients with transfusion 2326/12/6 thalassemiain Upper Egypt (single center Mahmoud M.A.M. Better understanding of 18. study). Health and quality of life outcomes. 2018;16(59): 1 health related quality of life in thalassemia 9. - patients treated by iron chelation therapy in Ayoub M.D, Radi S.A, Azab A.M, 14. Abulaban A.A, Balkhovor A.H, Bedair the United Arab Emirates. 2015; Retrieved from S.W, Ajaouni S.K, Kari J.. Quality of life - among children with beta thal https://www.duo.uio.no/bitstream/handle/10 assemia major -- 852/45193/MADIAN - THESIS treated in Western Saudi Arabia. Saudi Med 6. FINAL.pdf?sequence=1 J. 2013Dec; 34 (12): 1281 - 15. Dahlui M, Hishamshah M.I, Rahman A.J.A, 19. Dhirar N, Khandekar J, Bachani D, Mahto emia Major: how do we improve Aljunid S.M. Quality of life in transfusion D. Thalass quality of life? Springerplus. 2016; Oct 28; dependent thalassemia on patients desferrioxamine treatment. Singapore Med 5(1):1895 retrieved from J. 2009; 50 9 - (8): 794 https://www.ncbi.nlm.nih.gov/pubmed/2784 El - 16. 3752 Kamah G, Adam S, Magdy P, Michel M, 20. Siddiqui S.H, Ishtiaq R, Sajid F, Sajid R. Afifi H. Quality of life outcomes among Quality o Egyptian Children with beta lassemia - - f life in patients with thas thalassemia. major in a developing country. J Coll Blood. 2014; 124: 4864. Retrieved from http://www.bloodjournal.o rg/content/124/21 Physicians Surg Pak. 2014 Jul; 24 (7): 477 - 80 retrieved from 4864 https://www.ncbi.nlm.nih.gov/pubmed/2505 Caocci G, Efficace F, Ciotti F, Ron carolo 17. 2969 M.G, Vacca A, PirasE, Littera R et.al. Health related quality of life and its associated How to cite this article: Kavitha K, Padmaja A . - 9; 9(5 38 Int J Health Sci Res. 201 . factors among thalassemic children: A Review ): 3 90 . 6 **** ** International Journal of Health Sciences & Research (www.ijhsr.org) 390 2019 Vol.9; Issue: 5; May

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