GAMBARAN KUALITAS HIDUP ANAK PENYANDANG THALASSEMIA DI RSUD TIDAR MAGELANG

NOVA YULI PRASETYO B, Dr. dr. Sri Mulatsih, Sp.A(K); dr. S. Yudha Patria, Ph.D, Sp.A(K)

2015 | Skripsi | PENDIDIKAN DOKTER

Latar Belakang : Transfusi darah merupakan pengobatan utama untuk menanggulangi anemia pada thalassemia. Pemberian transfusi darah yang berulang-ulang akan mengakibatkan terjadinya penumpukan besi diberbagai jaringan atau organ tubuh. Pasien thalassemia beta mayor berhasil diterapi dengan baik pada pasien yang mempunyai good compliance transfusi dan terapi kelasi. Paling tidak setiap bulan sekali pasien harus melakukan transfusi dan meminum obat kelasi besi setiap hari. Hal ini tentu akan menjadi stressor fisik maupun psikososial bagi penyandang dan juga juga orang tuanya. Hal ini akan mempengaruhi Health Related Quality of Life. Pengukuran HRQoL merupakan luaran esensial untuk melihat well being akibat dari suatu penyakit kronik dan terapinya. Tujuan : Mengetahui nilai kualitas hidup anak penyandang thalassemia berdasarkan instrumen Pediatric Quality of Life Inventory (PedsQL)4.0 generik dan domain yang paling rendah disetiap kelompok umur. Metode : Penelitian deskriptif-observasional pada subjek pasien thalassemia beta mayor. Hasil : Penelitian ini dilakukan pada 53 subyek dengan response rate 77%. Dari 41 subyek yang digunakan dalam peneltilian didapatkan nilai kualitas hidup dari laporan orang tua, nilai total : 65,8; fungsi fisik 70,3; fungsi emosi: 61,9; fungsi sosial:76,1; sungsi sekolah 53,4. Berdasarkan laporan anak didapatkan nilai total: 74,1; fungsi fisik: 79,4; fungsi emosi 71,0; fungsi sosial 82,9; fungsi sosial: 65,0. Simpulan : Dari 4 domain fungsi kualitas hidup yang dilihat pada penelitian ini, fungsi sekolah merupakan fungsi yang mendapatkan nilai terendah menurut laporan anak dan laporan orang tua. Sebagian besar subyek mempunyai nilai kualitas hidup yang baik. Berdasarkan total summary score, laporan orang tua mendapatkan skor yang lebih rendah.

Background : Thalassemia is a genetic blood disorder which can be fatal if proper treatment is not received. Blood transfusion is the main treatment for treating anemia in thalassemia patient. Giving blood transfusion repeatedly will result in the accumulation of iron in various tissues or organs. Beta thalassemia major patients successfully treated with both good compliance transfusion and chelation therapy. At least once a month patient should regularly transfused and take an iron chelating drug every day. Certainly, this will be a physical and psychosocial stressor for patients and also their family. This will affect the Health Related Quality of Life. HRQoL measurement is essential to look at the outcomes of well being as a result of a chronic disease and its treatment. Goal : Understand the HRQoL score among thalassemia patient using with Generic Pediatric Quality of Life Inventory (PedsQL)4.0 and to know the most affected domain in each category of the variable. Methods : Descriptive observational study in beta thalassemia major patients using the PedsQL 4.0 generic Scale Score: physical, emotional, social and role (school) functioning. The Questionnaire was completed at baseline by all patients and their parents. Result : This study was conducted on 53 patients with response rate 77%. Parents reported lower scores than the children. Based on parents report, total summary score: 65,8; physical function: 70,3; emotional function 61,9; social function:76,1; and school function 53,4. In other hand, based on child report, total summary score: 74,1; physical function 79,4; emotional function: 71,0; social function 82,9; school fuction 65,0. Conclusion : Based on HRQoL, thalassemia has a negative impact on perceived physical, emotional, social and school functioning in thalassemia patients. School function is the domain that got lowest score reported by parent and the children. Parent reported lower scores than the children, it shows that parents may be too overprotective to their children.

Kata Kunci : thalassemia, HRQoL, PedsQL