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Abstrak :
Penelitian mendapatkan gambaran "faktor-faktor berhubungan dengan Selfcare Behavior anak usia sekolah dengan talasemia mayor". Penelitian merupakan penelitian cross sectional. Hipotesa yang dibuktikan adalah "Adanya hubungan antara Pengetahuan, Dukungan Sosial, Status Kesehatan, Usia, Jenis Kelamin, Lamanya Sakit dengan Selfcare behavior Anak Usia Sekolah dengan Talasemia Mayor". Sampel penelitian adalah pasien usia sekolah dengan talasemia mayor di RSUPN. Dr. Cipto Mangunkusumo Jakarta, sejumlah 131 pasien. Instrumen berupa instrument pengetahuan, dukungan sosial, status kesehatan dan instrument selfcare behavior. Hasil menunjukkan ada hubungan antara pengetahuan, dukungan sosial dengan selfcare behavior, dengan pengetahuan yang paling dominan. Penelitian ini merekomendasikan untuk meningkatkan pendidikan kesehatan tentang talasemia.

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This research to gain the description on "Analysis of Factors That Corelate With Talasemia's Selfcare Bahavior School Age Children With Major Thalassemia at RSUPN. Dr. Cipto Mangukusumo Jakarta 2010". The design of this research was descriptive correlation with cross sectional method. The proven in this research was the relationship between knowledge, social support, health condition, age, gender, long illness with thalassemia's selfcare behavior. The sample were 131 school age patiens with major thalassemia. In the research used to instrument about knowledge, social support, health condition and thalasemia's selfcare behavior. The result indicated that knowledge and social support had significant correlation with thalassemia's selfcare behavior. This research recommend to improve health education about thalassemia.

Abstrak :
ABSTRAK
Lama transfusi darah pada talasemia mayor menyebabkan hemosiderosis. Penelitian ini untuk mengetahui dampak lama pemberian PRC terhadap hemosiderosis kulit, endokrin, jantung, tulang, hati dan limfa, serta saluran pencernaan pada anak dengan talasemia mayor di Ruang Melati 2 RSUD Dr.Moewardi Surakarta. Penelitian kuantitatif, metode deskriptif analisis dengan pendekatan cross sectional. Sampel 35 anak, usia 3-17 tahun, dalam 4 kategori transfusi darah 1-5 tahun, >5-9 tahun, >9-13 tahun, dan >13-17 tahun. Penelitian dilakukan selama 2 bulan, Mei sampai Juni 2010, dengan wawancara, pemeriksaan fisik, dan observasi. Analisis data menggunakan uji ANOVA. Ada perbedaan hemosiderosis keseluruhan organ diantara keempat kategori lama transfusi darah (p=0,05). Ada perbedaan hemosiderosis pada kulit (p=0,000), endokrin (p=0,032), tulang (p=0,015), hati dan limfa (p=0,000). Hemosiderosis dapat terjadi pada beberapa organ maupun seluruh organ tubuh. Rekomendasi untuk perawat yaitu mengantisipasi hemosiderosis dan memberikan perawatan sesuai dengan kondisi hemosiderosis anak talasemia mayor.

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Abstract
Duration of blood transfusion resulted hemosiderosis. This study to known duration of PRC transfusion effect for hemosiderosis of skin, endocrine, heart, bone, hepar and lien, and tractus digestivus in children with major thalassemia at Melati 2 ward of Dr.Moewardi Hospital in Surakarta 2010. This study was kuantitative researched, analized descriptived method, cross sectional approached. Sample of 35 children, at the age range of 3 to 17 years in 4 groups were transfusion 1-5 years, >5-9 years, >9-13 years, and >13-17 years. This study did two months, Mei until June 2010 with interviewed, physical examinated, and observated. Data analized with ANOVA test. There was statistical difference between 4 groups transfusion prolonged for hemosiderosis (p=0,05). There were statistical difference were skin (p=0,000), endocrine (p=0,032), bone (p=0,015), hepar and lien (p=0,000). Hemosiderosis could occur at several body organs or all organs. Rekomendation for nurses, nurses should anticipate hemosiderosis and taken care for each organ of hemosiderosis.

Abstrak :
Tindakan aborsi merupakan tindakan kriminal di Indonesia, akan tertapi terdapat pengecualian dalam pelaksanaannya apabila terdapat indikasi kedaruratan medis atau kehamilan terjadi akibat perkosaan. Talasemia merupakan penyakit genetik kelainan sel darah merah. Talasemia mayor merupakan keadaan klinis talasemia yang paling berat karena pengidapnya membutuhkan transfusi darah seumur hidup. Penelitian ini mengkaji permasalahan pengaturan tindakan penghentian kehamilan di Indonesia, pengaturan dan penanganan pasien pengidap talasemia mayor, serta menganalisis tindakan penghentian kehamilan terhadap janin pengidap talasemia mayor. penelitian ini merupakan penelitian yuridis-normatif yang bersifat deskriptif dengan mengkaji data sekunder yang diperoleh dari bahan hukum, serta data primer melalui wawancara narasumber, dengan metode analisis data kualitatif. Simpulan dari penelitian ini adalah pengaturan mengenai aborsi atas indikasi kedaruratan medis sebenarnya mengakomodir kasus terminasi kehamilan terhadap janin pengidap talasemia mayor setelah dilakukannya prenatal diagnosis, namun dalam pelaksanaannya, dokter kandungan di Indonesia memilih untuk mengikuti hati nuraninya dan menolak untuk melakukan terminasi kehamilan terhadap janin pengidap talasemia mayor. Perlu adanya pengaturan lebih detail mengenai batas usia kehamilan serta penyakit apa saja yang termasuk sebagai hal kedaruratan medis sebagai pengecualian diperbolehkan dilakukannya tindakan aborsi. ......Termination of pregnancy is illegal in Indonesia, but there are exceptions in its implementation if there are indications of a medical emergency or pregnancy due to rape. Thalassemia is a genetic disease of red blood cell disorders. Thalassemia major is the most severe clinical condition of thalassemia because the sufferer requires blood transfusion for life. This study examines the problems of regulating termination of pregnancy in Indonesia, the regulation and management patients with thalassemia major, and analyzing the termination of pregnancy for fetuses with thalassemia major. This research is a descriptive-juridical-normative research by examining secondary data obtained from legal materials, as well as primary data through interviewing sources, using qualitative data analysis methods. The conclusion of this study is that the regulation of abortion for medical emergency situation is sufficient to acommodates cases of termination of pregnancy for fetuses with thalassemia major after prenatal diagnosis, but in practice, obstetricians in Indonesia choose to follow their conscience and refuse to terminate pregnancy for fetuses with major thalassemia. . There needs to be a more detailed regulation regarding the age limit for pregnancy and what diseases are included as medical emergencies as an exception to the permissible act of abortion.

Abstrak :
Latar belakang: Kegagalan pertumbuhan sering terjadi pada pasien talasemia mayor (TM). Tata laksana nutrisi merupakan salah satu aspek penting untuk mengoptimalkan hasil luaran klinis. Penilaian komposisi tubuh berupa persentase massa otot, persentase masa lemak dan densitas massa tulang (DMT) menjadi komponen penting dalam mengevaluasi status gizi. Hingga saat ini belum ada penelitian di Indonesia yang mengevaluasi hubungan antara asupan makronutrien dan mikronutrien terhadap komposisi tubuh pada pasien TM remaja serta hubungannya dengan berbagai parameter antropometri. Metode: Penelitian dengan desain studi potong lintang melibatkan 55 pasien TM remaja, berusia 10-18 tahun di Pusat Talasemia RSUPN Cipto Mangunkusumo. Status gizi dievaluasi disertai pengukuran lingkar lengan atas (LILA), triceps skin thicknes (TSK), dan mid-upper arm muscle circumference (MUAMC). Asupan makronutrien dan mikronutrien diperoleh melalui food record selama tiga hari. Persentase massa otot, massa lemak, dan DMT dinilai menggunakan dual-energy X-ray absorptiometry (DXA). Kadar vitamin D diperiksa melalui metode enzyme-linked immunosorbent assay (ELISA). Data dianalisis menggunakan korelasi Pearson dan Spearman sesuai dengan pola distribusi normalitas. Hasil penelitian: Gizi kurang dijumpai pada 58,2% subjek dan gizi buruk pada 9,1% subjek. Rerata dan median asupan zat gizi harian dibandingkan dengan kebutuhannya pada subyek lelaki yakni asupan energi 85,6 % (SB 20,19), protein 55% (SB 14,19), lemak 112,4% (SB 35,48), karbohidrat 85,5 % (SB 23,31), vitamin D 29% (RIK 15,68-40,80), vitamin E 34,1% (SB 14,77), kalsium 37% (RIK 16,63-43,45), dan asam folat 32,98% (SB 14,6), sedangkan pada subyek perempuan asupan energi 93,6 % (SB 18,61), protein 59% (RIK 51-63), lemak 112,4% (RIK 105-142,5), karbohidrat 93,3 % (SB 25,5), vitamin D 22% (RIK 13,65-43), vitamin E 24% (RIK 21,65-39,7), kalsium 35,7% (RIK 20,45-55,6), dan asam folat 26,3% (RIK 16,2-41,15). Terdapat korelasi  ringan antara asupan energi dengan persentase massa lemak pada subyek lelaki dan perempuan (r= 0,25, p= 0,017; r= 0,38, p= 0,02). Tidak terdapat korelasi antara asupan karbohidrat, lemak, dan protein, vitamin D, vitamin E, kalsium, dan asam folat terhadap persentase massa otot, persentase massa lemak dan DMT. Kadar vitamin D tidak berkorelasi dengan komposisi tubuh. Terdapat korelasi kuat antara LILA dan MUAMC dengan persentase massa otot (r= 0,54, p<0,001; r= 0,68, p<0,001) dan massa lemak (r=0,77, p<0,001; r= 0,61, p<0,001). Kesimpulan: Lebih dari separuh remaja talasemia mengalami malnutrisi dan kekurangan asupan protein. Komposisi tubuh berkorelasi dengan jumlah asupan energi, tetapi tidak dengan yang lainnya. Kadar vitamin D tidak berkorelasi dengan komposisi tubuh. Lingkar lengan atas (LILA) dan MUAMC berkorelasi dengan persentase massa otot dan massa lemak. ......Background:Growth failure is common in thalassemia major (TM) patients. Nutritional management is an imperative aspect to optimize the clinical outcome. Measurement of muscle mass percentage, fat mass percentage, and bone mass density (BMD) on body composition is important component in assessing the nutritional status. There has been no study in Indonesia for the correlation between macronutrient and micronutrient intake on body composition in adolescents with thalassemia major. Methods: This cross-sectional study involved 55 adolescent TM patients aged 10-18 years old taken through concecutive sampling at the Thalassemia Center dr. Cipto Mangunkusumo National Hospital Jakarta. Nutritional status was evaluated and anthropometric measurements was performed including  mid-upper arm circumference (MUAC), triceps skin thickness (TSK), and mid-upper arm muscle circumference (MUAMC). Macronutrient and micronutrient intake was obtained through a three-day food record. Muscle mass percentage, fat mass percentage, and BMD were assessed by dual-energy X-ray absorptiometry (DXA). The enzyme-linked immunosorbent assay (ELISA) method was used to examine vitamin D levels. The data was analyzed by Pearson and Spearman correlation depending on the type of distribution. Result: Moderate malnourish occurred in 58.2% subjects and severe malnourish in 9,1% subjects. The mean and median daily nutrient intake compared to their needs in male subjects were energy intake 85.6% (SD 20.19), protein 55% (SD 14.19), fat 112.4% (SD 35.48), carbohydrates 85.5% (SD 23.31), vitamin D 29% (IQR 15.68-40.80), vitamin E 34.1% (SD 14.77), calcium 37% (IQR 16.63-43, 45), and folic acid 32.98% (SD 14.6), while in female subjects, energy intake were 93.6% (SD 18.61), protein 59% (IQR 51-63), fat 112.4% (IQR 105-142.5), carbohydrates 93.3% (SD 25.5), vitamin D 22% (IQR 13.65-43), vitamin E 24% (IQR 21.65-39.7), calcium 35 .7% (IQR 20.45-55.6), and folic acid 26.3% (IQR 16.2-41.15). There was a mild correlation between energy intake and fat mass percentage in male and female subjects (r= 0,25, p= 0,017; r= 0,38, p= 0,02). There was no correlation between carbohydrate, fat, and proteis, vitamin D, vitamin E, calcium, and folic acid on the proportion of muscle mass percentage, fat mass percentage, and BMD. Vitamin D levels were not correlated with body composition. There were strong correlation between MUAC and MUAMC with the percentage of muscle mass (r= 0.54, p<0.001; r= 0.68, p <0.001) and fat mass (r=0.77, p<0.001; r= 0.61 , p < 0.001). Conclusion: More than half of adolescent TM patients are malnourished and lack protein intake. Body composition correlates with total calorie intake, but not with anything else. Vitamin D levels are not correlated with body composition. Mid-upper arm circumference and MUAMC correlate with the percentage of muscle mass and fat mass.

Abstrak :
Latar belakang. Pandemi COVID-19 dapat menyebabkan peningkatan masalah psikososial pada remaja dari populasi umum. Talasemia merupakan penyakit kronik yang banyak ditemukan pada anak dan remaja di Indonesia. Pasien dengan penyakit kronik rmerupakan kelompok yang rentan mengalami peningkatan masalah psikososial selama pandemi COVID-19. Peningkatan masalah psikososial menyebabkan risiko peningkatan morbiditas dan penurunan kualitas hidup. Pandemi juga dapat berdampak pada praktik transfusi darah pasien talasemia. Saat ini belum diketahui gambaran masalah psikososial dan praktik transfusi darah pada remaja talasemia mayor di Indonesia selama masa pandemi COVID-19. Tujuan. Mengetahui gambaran masalah psikososial pada remaja dengan talasemia mayor selama pandemi COVID-19 di RS Cipto Mangunkusumo, Jakarta, dan dampak pandemi COVID-19 pada praktik transfusi darah di RSCM. Metode. Penelitian ini merupakan studi potong lintang yang dilakukan pada 121 pasien talasemia mayor berusia 10 sampai <18 tahun di RSCM. Penilaian psikososial dilakukan melalui pengisian Strengths and Difficulties Questionnaire (SDQ). Penilaian depresi dilakukan melalui pengisian Children’s Depression Inventory (CDI). Analisis komparatif kategorikal berpasangan dilakukan untuk menilai perbedaan frekuensi transfusi dan nilai rerata Hb pretransfusi sebelum dan selama pandemi COVID-19. Hasil. Sebanyak 11,6% remaja talasemia mayor memiliki total skor SDQ abnormal dengan gambaran masalah meliputi masalah emosi (18,2%), masalah conduct (9,9%), hiperaktivitas (5%), masalah hubungan dengan teman sebaya (8.3%), dan masalah perilaku prososial (1,7%). Sebanyak 19% remaja talasemia mayor mengalami peningkatan gejala depresi berdasarkan penilaian CDI. Tidak terdapat perbedaan bermakna pada frekuensi transfusi sebelum dan selama pandemi COVID-19, tetapi terdapat perbedaan bermakna pada pola interval transfusi pasien (p=0,017) dan nilai rerata Hb pretransfusi (p=0,043) sebelum dan selama pandemi COVID-19. Volume darah yang didapatkan oleh pasien talasemia mayor lebih rendah selama pandemi COVID-19 daripada volume darah yang dibutuhkan yang bermakna secara statistik (p<0,001). Kesimpulan. Skrining masalah psikososial pada remaja talasemia mayor menunjukkan masalah yang paling banyak ditemukan selama masa pandemi COVID-19 adalah masalah emosi dan masalah conduct, dengan sejumlah pasien mengalami peningkatan gejala depresi. Pandemi COVID-19 memberikan dampak pada pola interval transfusi darah oleh pasien talasemia mayor. ......Background. The COVID-19 pandemic may increase the risk of psychosocial problems in adolescents from general population. Thallasemia is highly prevalent chronic disease in children and adolescents in Indonesia. Patients with chronic disease are vulnerable to have more psychosocial problems during the COVID-19 pandemic. An increase in psychosocial problems may lead to high morbidity and the risk of decreased quality of life. The pandemic can also have an impact on the transfusion practice of thalassemia patients. The psychosocial problems and its impact on transfusion practice in adolescents with thalassemia major during the COVID-19 pandemic in Indonesia have not been established. Objectives. To evaluate the magnitude of psychosocial problems in adolescents with thalassemia major during the COVID-19 pandemic and the impact of the COVID-19 pandemic on the transfusion practice at Cipto Mangunkusumo Hospital, Jakarta. Methods. This is a cross-sectional study on 121 thalassemia mayor patients aged 10-<18 years old at Cipto Mangunkusumo Hospital. Psychosocial aspect was evaluated using the Strengths and Difficulties Questionnaire (SDQ) form. Depression was further assessed using the Children’s Depression Inventory (CDI) form. A comparative paired categorical analysis was performed to analyze the difference between before and during the COVID-19 pandemic concerning transfusion frequency and average pretransfusion haemoglobin. Results. There are 11,6% thalassemia major adolescents with abnormal total SDQ scores including emotional problems (18,2%), conduct problems (9,9%), hiperactivity (5%), peer problems (8.3%), dan prosocial behavior problems (1,7%).  Nineteen percents thalassemia major adolescents experienced elevated number of depressive symptoms. There was no significant difference between before and during the COVID-19 pandemic concerning transfusion frequency, but there were significant difference between before and during the COVID-19 pandemic concerning blood transfusion pattern (p=0,017) and average pretransfusion haemoglobin (p=0,043). The blood volume obtained by thalassemia major patients was also lower during the COVID-19 pandemic than the required blood volume that is statiscally significant(p<0,001). Conclusion. Psychosocial screening in adolescents with thalassemia major during the COVID-19 pandemic showed that the most common problems encountered were emotional problems and conduct problems, with a number of patients experiencing elevated symptoms of depression. The pandemic had an impact on the blood transfusion pattern for thalassemia major patients.

Abstrak :
Latar belakang. Hipoparatiroid merupakan salah satu komplikasi yang terjadi pada talasemia mayor akibat deposisi besi di kelenjar paratiroid. Sampai dengan saat ini belum diketahui berapa prevalens hipoparatiroid pada anak talasemia mayor di Indonesia. Keterlambatan dalam diagnosis dan tata laksana dapat menyebabkan risiko terjadinya morbiditas seperti fraktur, osteoporosis, atau kejang. Tujuan. Mengetahui prevalens hipoparatiroid pada pasien talasemia mayor usia 7-12 tahun dan faktor yang memengaruhi. Metode. Penelitian ini adalah penelitian potong lintang yang dilakukan pada 64 pasien talasemia mayor usia 7-12 tahun di RSCM. Pengambilan darah puasa dilakukan untuk menilai kalsium ion (Ca), serum fosfat (P), magnesium, 25-(OH)D3 dan intak paratiroid hormon (iPTH). Subyek diklasifikasikan sebagai hipoparatiroid primer bila mengalami hipokalsemia dan penurunan iPTH, hipoparatiroid subklinis bila hipokalsemia dan atau penurunan 25-(OH)D3 tanpa peningkatan iPTH. Analisis bivariat dan regresi multipel logistik dilakukan untuk menilai faktor risiko hipoparatiroid. Hasil. Rerata usia subyek adalah 9,7(SB 1,6) tahun dengan lelaki 51,6%(n=33). Ditemukan hipoparatiroid primer sebanyak 6/64 (9,4%) subyek (rerata iPTH 11,9(SB 2,3) pg/mL), hipoparatiroid subklinis 34/64 (53,1%) subyek (median iPTH 31,4(20,0-64,0) pg/mL). Kejadian hipoparatiroid lebih banyak ditemukan pada subyek dengan frekuensi transfusi >1x/bulan, kepatuhan kelasi tidak baik dan Hb pre-transfusi <9 g/dL. Namun, berdasarkan hasil analisis regresi logistik hanya lama sakit >5 tahun yang memiliki hubungan bermakna dengan kejadian hipoparatiroid (rasio odd 8,6 interval kepercayaan 2,1-35,7 p=0,003). Terdapat korelasi negatif ringan dan sedang antara nilai rerata feritin (r-0,34, p=0,01) dan saturasi transferin (r=-0,41, p<0,0001) dengan kejadian hipoparatiroid. Kesimpulan. Prevalens hipoparatiroid pada dekade pertama kehidupan pada pasien talasemia mayor di Indonesia cukup tinggi. Lama sakit >5 tahun adalah faktor prediktor yang sangat memengaruhi kejadian hipoparatiroid pada anak talasemia mayor. ......Background. Hypoparathyroidism is a complication that occurs in thalassemia major due to iron deposition in the parathyroid glands. Until now, the prevalence of hypoparathyroidsm in children with thalassemia major is unknown. Delay in diagnosis and treatment can increase the risk of developing morbidities such as fractures, osteoporosis, or seizure. Methods. This study was cross-sectional, conducted on 64 thalassemia major patients, aged 7-12 years, in Cipto Mangunkusumo Hospital (CMH). Blood samples were collected in fasting to determine Calcium ion (Ca), Phosphorus (P), Magnesium (Mg) , 25-(OH)D3 and intact parathyroid hormone (iPTH). Subjects were classified into primary hypoparathyroidism (low Ca and low iPTH), subclinical hypoparathyroidsm (low Ca and/or low 25(OH)D3 without an increase of iPTH). Bivariate analysis and multiple logistic regression were performed to assess risk factors for hypoparathyroidsm. Result. The mean age of the subjects was 9.7(SD 1.6) years with 51.6% male (n=33). primary hypoparathyroidism was found in 6/64(9.4%) subjects (mean iPTH 11.9(SD 2.3 pg/mL), subclinical hypoparathyroidism in 34/64(53.1%) subjects (median iPTH 31.4(20-64) pg/mL). The prevalence of hypoparathyroidism was more common in subjects with tranfusion frequency >1x/month, poor chelation compliance and pre-transfusion haemoglobin <9 g/dL. However, based on the results of logistic regression analysis, only duration of illness >5 years had a significant relationship with hypoparathyroidism (odds ratio 8.6, confidence inrerval 2.1-35.7 p=0.003). There was a mild and moderate negative correlation between the mean value of ferritin (r=-0.34, p=0.01) and transferrin saturation (r=-0.41, p<0.0001) with hypoparathyroidism. Conclusion. The prevalence of hypoparathyroidism in the first decade of life in thalassemia major in Indonesia is quite high. Duration of illness >5 years is a predictor factor that greatly influences the incidence of hypoparathyroidism in children with thalassemia major.

Abstrak :
Pada dua tahun pertama kehidupan penderita talasemia mayor, umumnya menderita anemia dan membutuhkan tranfusi darah. Penelitian ini bertujuan membuat model prediksi kebutuhan darah bagi penderita talasemia mayor. Penelitian observasional dengan desain studi pendekatan potong lintang ini dilakukan pada sampel 79 penderita talasemia mayor yang melakukan transfusi rutin minimal satu bulan satu kali di Rumah Sakit Umum Banyumas, selama tahun 2012. Analisis regresi linier ganda digunakan untuk membuat model prediksi. Hasil penelitian menunjukkan bahwa 80,7% kebutuhan darah penderia talasemia mayor dijelaskan oleh variabel usia, berat badan, dan kadar hemoglobin sedangkan 19,3% dijelaskan oleh sebab-sebab yang lain. Rumus prediksi menyatakan setiap kenaikan usia 1 tahun maka kebutuhan darah akan bertambah sebanyak 0,816 mililiter dan setiap kenaikan 1 kilogram berat badan maka kebutuhan darah akan bertambah 13,4 mililiter serta apabila kadar hemoglobin mengalami penurunan 1 g/dL maka kebutuhan darah akan bertambah sebesar 81 mililiter. ......Patients with thalassemia major usually present within the first two years of life with severe anemia, need red blood cell transfusion. The objective of this study was to create a prediction model of blood transfusion need for patients with thalassemia mayor. This type of research was observational with cross sectional design. Samples are 79 patients with thalassemia major who perform routine transfusion at least once in a month at Banyumas hospital in 2012. Multiple linier regression analysis was used to create the model. The results showed that 80.7% blood requirements can be explained by variables of weight, haemoglobin level and age, while 19.3% is explained by other causes. Prediction formula states every increment of one year in age, the need for blood will increase by 0.816 millilitres and every increment of one kilogram of body weight, the need for blood will increase 13.4 millilitres, Model Prediksi Kebutuhan Darah untuk Penderita Talasemia Mayor Blood Need Prediction Model for Mayor Thalassemia Patients Dwi Sarwani Sri Rejeki* Putri Pradani* Nunung Nurhayati** Supriyanto** and when the haemoglobin level decreased 1 gr/dL the need for blood will increase by 81 millilitres.