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"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.

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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."

"Latar Belakang: Hemofilia A adalah gangguan perdarahan herediter akibat defisiensi faktor VIII (FVIII). Scientific and Standardization Committee (SSC), pada tahun 2021, mengeluarkan nomenklatur baru yang membagi perempuan menjadi lima kategori: hemofilia ringan, sedang, berat, serta pembawa sifat simptomatik dan asimptomatik. Penelitian ini bertujuan mengidentifikasi proporsi pasien dan pembawa sifat hemofilia A perempuan di RSCM, serta manifestasi dan derajat keparahan menggunakan kuesioner International Society on Thrombosis and Haemostasis - Bleeding Assessment Tool (ISTH-BAT).Metode: Penelitian cross-sectional analitik dilakukan di RSCM selama Agustus-September 2024. Subjek penelitian adalah kerabat perempuan dari pasien hemofilia A berusia ≤18 tahun. Pemeriksaan FVIII dilakukan. Kuesioner ISTH-BAT yang telah diterjemahkan digunakan sebagai alat skrining untuk mengevaluasi manifestasi perdarahan.Hasil: Berdasarkan 74 subjek yang diteliti, 5 orang terdiagnosis hemofilia A, terdiri dari 4 hemofilia ringan dan 1 hemofilia berat. 69 subjek yang diidentifikasi sebagai pembawa sifat, 62 orang merupakan pembawa sifat asimptomatik, sementara 7 orang adalah pembawa sifat simptomatik. Manifestasi perdarahan pada pasien hemofilia A perempuan bervariasi antara kelompok anak dan dewasa. Pada kelompok anak, manifestasi paling umum adalah memar pada kulit, sedangkan pada kelompok dewasa, menoragia menjadi manifestasi yang paling sering ditemukan. Pada pembawa sifat simptomatik, baik anak maupun dewasa, manifestasi perdarahan yang dominan adalah memar pada kulit dan menoragia. Skor ISTH-BAT pembawa sifat asimptomatik, simptomatik, dan pasien hemofilia berturut-turut adalah 0,83 ± 1,7; 6,2 ± 1,2 dan 3,25 ± 2,9.Kesimpulan: Hasil penelitian ini menunjukkan proporsi pasien hemofilia A perempuan di RSCM masih relatif rendah, dengan sebagian besar pembawa sifat bersifat asimptomatik. Manifestasi perdarahan tersering pada pasien dan pembawa sifat simptomatik hemofilia A perempuan adalah menoragia dan memar pada kulit.

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Background: Hemophilia A is a hereditary bleeding disorder caused by factor VIII (FVIII) deficiency. In 2021, the Scientific and Standardization Committee (SSC) introduced a new nomenclature categorizing women into five groups: mild, moderate, and severe hemophilia, as well as symptomatic and asymptomatic carriers. This study aimed to identify the proportion of female patients and carriers of hemophilia A at RSCM, along with their manifestations and severity levels, using the International Society on Thrombosis and Haemostasis - Bleeding Assessment Tool (ISTH-BAT) questionnaire.

Methods: A cross-sectional analytical study was conducted at RSCM from August to September 2024. The study subjects were female relatives of hemophilia A patients aged ≤18 years. FVIII levels were measured, and the translated ISTH-BAT questionnaire was used as a screening tool to evaluate bleeding manifestations.

Results: Among the 74 subjects studied, 5 were diagnosed with hemophilia A, comprising 4 cases of mild hemophilia and 1 case of severe hemophilia. Of the 69 subjects identified as carriers, 62 were asymptomatic carriers, while 7 were symptomatic carriers. Bleeding manifestations in female hemophilia A patients varied between children and adults. In children, the most common manifestation was skin bruising, whereas in adults, menorrhagia was the most frequently observed manifestation. Among symptomatic carriers, both children and adults predominantly experienced skin bruising and menorrhagia. The ISTH-BAT scores for asymptomatic carriers, symptomatic carriers, and hemophilia patients were 0.83 ± 1.7, 6.2 ± 1.2, and 3.25 ± 2.9, respectively.

Conclusion: Results of this study indicate that the proportion of female hemophilia A patients at RSCM remains relatively low, with the majority of carriers being asymptomatic. The most common bleeding manifestations in symptomatic female hemophilia A patients and carriers are menorrhagia and skin bruising."