FAKTOR-FAKTOR YANG BERHUBUNGAN DENGAN KUALITAS HIDUP ANAK THALASSEMIA BETA MAYOR FACTORS RELATING TO QUALITY OF LIFE CHILDREN WITH THALASSEMIA BETA MAJOR

Abstract

BSTRACT Back ground. Thalassemia is a chronic disease which makes a lot of problem due to defect of various organs because of the illness it self or the treatment being given. Development of a disease during physical and psychosocial maturation could disrupt a child’s quality of life. Aims. To prove the factors which relating to quality of life of children with thalassemia β major. Methods. Design: cross sectional. Subject: 55 thalassemia β major’s children aged 5- 14 years old at Kariadi hospital and Blood Transfusion Unit PMI Semarang (January - June 2009). Hemoglobin level was measured by Sodium Lauryl Sulfate method. Ferritin was measured by IRMA method. Quality of life was measured using PedsQL generic. Statistic analysis were done using Pearson Correlation, Spearman and Multivariate Regression Logistics. Result. Girls predominate, mean age 9,8±3,40 years. QOL measurement found that mean QOL was 65,8 (+ 13,6). Correlation test between mean QOL with Hb levels (r=+0,289;p=0,032), economy status (r=+0,304; p=0,024), father education (r=+0,295;p=0,029), mother education (r=+0,336;p=0,012). Correlation test between mean QOL with spleen measurement (r=-0,324;p=0,016). As a whole level of Hb, level of ferritin, level of chelation, spleen measurement, economy status and also parents education (mother & father), which have an impact the QOL, with spleen measurement as the main factor. Conclusion. We find that higher Hb level, economic status and father-mother education correlate significantly with higher value of QOL thalasemia beta major children, but bigger spleen measurement correlate significantly with lower value of QOL. Key words. Thalassemia, Quality of Life xvi ABSTRAK Latar belakang. Thalassemia adalah penyakit kronik yang berdampak pada berbagai organ karena penyakitnya sendiri maupun pengobatan yang diberikan. Terjadinya penyakit saat maturasi fisik dan psikososial dapat mengganggu kualitas hidup anak Tujuan. Membuktikan faktor-faktor yang berhubungan dengan kualitas hidup anak thalassemia mayor Metode penelitian. Disain belah lintang. Subyek : anak thalassemia beta mayor umur 5-14 tahun yang menjalani transfusi di RS dr.Kariadi,UTD PMI Semarang (Januari 2009-Juni 2009). Kadar hemoglobin diukur dengan metode Sodium Lauryl Sulfate bebas sianida, feritin dengan metode IRMA. Pengukuran kualitas hidup anak menggunakan Peds QL generic, dianalisa hubungannya dengan hemoglobin, feritin, jenis kelasi besi, ukuran limpa, status gizi, status ekonomi, tingkat pendidikan orang tua. Analisis statistik menggunakan Pearson correlation, Spearman dan Multiple Linier Regression Hasil. Dari 55 anak thalassemia beta mayor, 5-14 tahun, rerata umur 9,8±3,40 tahun. Pengukuran kualitas hidup didapatkan rerata kualitas hidup 65,8(±13,6).Terdapat hubungan bermakna positif antara kadar Hemoglobin (r=0,289;p=0,032), status ekonomi (r=0,304; p=0,024), pendidikan ayah (r=0,295;p=0,029), pendidikan ibu (r=0,336;p=0,012) dengan rerata nilai kualitas hidup. Terdapat hubungan bermakna negatif antara nilai kualitas hidup anak thalassemia dengan ukuran limpa (r=-0,324; p=0,016). Secara bersama-sama status ekonomi, pendidikan ibu, kadar feritin, pendidikan ayah, kadar Hb, jenis kelasi besi , ukuran limpa, berpengaruh terhadap kualitas hidup anak thalassemia beta mayor dengan ukuran limpa sebagai faktor yang paling berpengaruh. Simpulan. Terdapat hubungan bermakna sdebagai berikut: makin tinggi kadar hemoglobin, status ekonomi dan tingkat pendidikan ayah, ibu makin tinggi nilai kualitas hidup. Tetapi makin besar ukuran limpa makin rendah nilai kualitas hidupnya. Kata kunci: Thalassemia, Kualitas hidup