<![CDATA[Abstrak Talasemia merupakan kelainan genetik yang membutuhkan penanganan jangka panjang dan dapat mempengaruhi aspek pertumbuhan dan kualitas hidup anak. Penelitian ini bertujuan untuk menggambarkan profil status gizi dan kualitas hidup anak penderita talasemia. Penelitian ini merupakan penelitian deskriptif dengan pendekatan cross sectional yang melibatkan seluruh pasien anak talasemia di RSUD Temanggung berjumlah 15 pasien. Pengambilan data dengan kuesioner profil pertumbuhan dan instrumen Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL). Data dianalisis secara deskriptif dengan distribusi frekuensi, penghitungan status gizi dan skoring instrumen PedsQL. Hasil penelitian menunjukkan responden berjumlah 15 pasien anak dengan usia sebagian besar pada kelompok usia sekolah (9,3 th). Kadar hemoglobin (Hb) pra tranfusi rata-rata 8,11 gr/dl dan 80% responden melakukan tranfusi setiap 4 minggu. Usia diagnosis paling banyak terjadi pada usia 3 tahun. Profil status gizi berdasarkan IMT dijumpai 20% status gizi gemuk, 20% status gizi kurus dan 60% status gizi normal. 80% responden memiliki riwayat berat dan panjang lahir normal. Berdasarkan analisis PedsQL laporan anak, terdapat 33,3% anak memiliki kualitas hidup buruk dengan skor rata-rata 56,1 dan 66,7% memiliki kualitas hidup baik dengan skor rata-rata 88,8. Sedangkan berdasarkan laporan orang tua, 26,7% memiliki kualitas hidup buruk dengan skor 63,9 dan 73,3 % memiliki kualitas hidup baik dengan skor 84,3. Adapun skor terendah berada pada fungsi sekolah yaitu sebesar 69,7 (buruk). Profil status gizi berdasarkan IMT sebagian besar anak berstatus gizi normal. Kualitas hidup anak talasemia pada kategori baik berdasarkan laporan anak dan orang tua. Hasil ini sebagai dasar bagi perawat dalam memberikan intervensi keperawatan. Kata Kunci: anak talasemia; kualitas hidup; profil status gizi Abstract Thalassemia is a genetic disorder that requires long-term treatment and can affect aspects of a child's growth and quality of life. This study aims at describing the nutritional status profile and quality of life of children with thalassemia. This research was a descriptive study with a cross-sectional approach involving all 15 thalassemia pediatric patients at Temanggung Regional Hospital. Data were collected using a growth profile questionnaire and the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) instrument. Data were analyzed descriptively using frequency distribution, calculating nutritional status and scoring the PedsQL instrument. The research results showed that the respondents were 15 pediatric patients, most of them were in the school age group (9.3 years). Pre-transfusion hemoglobin (Hb) levels averaged 8.11 gr/dl and 80% of respondents underwent transfusions every 4 weeks. The most common age of diagnosis was 3 years old. The growth profile based on BMI found 20% fat nutritional status, 20% thin nutritional status and 60% normal nutritional status. 80% of respondents had a history of normal birth weight and length. Based on PedsQL analysis of children's reports, 33.3% of children had poor quality of life with an average score of 56.1 and 66.7% had good quality of life with an average score of 88.8. Meanwhile, based on parent reports, 26.7% had a poor quality of life with a score of 63.9 and 73.3% had a good quality of life with a score of 84.3. The lowest score was for school function, namely 69.7 (bad). The nutritional status profile based on BMI of most children has normal nutritional status. The quality of life of thalassemia children is in the good category based on child and parent reports. These results as the basis data for nurses in providing nursing interventions. Keywords : children with thalassemia, quality of life, profile of nutrition status]]>
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