Thalassemia merupakan penyakit hereditas kronis dengan prevalensi tinggi di Indonesia. Studi cross-sectional ini melibatkan 109 pasein thalassemia beta mayor berusia 10 – 18 tahun yang menjalani terapi kelasi besi di RSUPN dr. Cipto Mangunkusumo untuk menilai hubungan antara persepsi penyakit (B-IPQ) dan kepatuhan terapi kelasi besi (MMAS-8). Sebagian besar responden berusia 10 – 14 tahun (50,5%) dan didominasi oleh laki-laki (51,4%). Mayoritas responden memiliki rumah sendiri (57,8%). Status pekerjaan orang tua menunjukkan 94,5% ayah responden bekerja dan 63,3% ibu responden tidak bekerja. 52,3% responden mengalami thalassemia > 12 tahun. Kadar Hb pratransfusi < 9 g/dL dialami oleh 55% responden. Frekuensi transfusi darah terbanyak dilakukan ≥ 2 kali dalam sebulan oleh 70,6% responden. Mayoritas responden (85,3%) tidak dapat mengendalikan kadar feritin. Seluruh responden minum obat terapi kelasi secara oral. Hasil menunjukkan 70,6% responden memiliki persepsi penyakit positif dan 57,8% responden memiliki kepatuhan yang rendah. Uji Chi-square menunjukkan hubungan signifikan antara usia dan kepatuhan (p = 0,025), tetapi tidak ditemukan hubungan signifikan antara persepsi penyakit atau faktor demografis lainnya dengan kepatuhan (p > 0,05). Penelitian ini menunjukkan bahwa kepatuhan terapi kelasi semakin rendah seiring bertambahnya usia. Dengan demikian, orang tua perlu memahami cara berkomunikasi efektif dengan remaja. Perawat anak perlu memberikan intervensi yang menyasar efikasi dan manajemen diri pasien untuk meningkatkan kepatuhan.

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Thalassemia is a chronic hereditary disease with high prevalence in Indonesia. This cross-sectional study involved 109 beta-thalassemia major patients aged 10-18 years undergoing iron chelation therapy at Dr. Cipto Mangunkusumo National Central Public Hospital. The study aimed to assess the association between illness perception (B-IPQ) and adherence to iron chelation therapy (MMAS-8). The majority of respondents were aged 10-14 years (50.5%) and predominantly male (51.4%). Most respondents lived in their own homes (57.8%). Parental employment status indicated that 94.5% of fathers were employed, while 63.3% of mothers were unemployed. Furthermore, 52.3% of respondents had experienced thalassemia for more than 12 years. Pre-transfusion hemoglobin levels of < 9 g/dL were observed in 55% of respondents. The most frequent blood transfusions (≥ 2 times per month) were reported by 70.6% of respondents. A significant majority (85.3%) of respondents were unable to control their ferritin levels. All respondents received oral chelation therapy. Results showed that 70.6% of respondents had a positive illness perception, while 57.8% demonstrated low adherence to therapy. Chi-square tests revealed a significant association between age and adherence (p = 0.025), but no significant association was found between illness perception or other demographic factors and adherence (p > 0.05). This study indicates that adherence to chelation therapy tends to decrease with increasing age. Therefore, parents need to understand effective communication strategies with adolescents. Pediatric nurses should implement interventions targeting patients' self-efficacy and self-management skills to improve adherence.