MASALAH PERILAKU-EMOSI DAN KUALITAS HIDUP PADA PASIEN HIPERPLASIA ADRENAL KONGENITAL DIBANDINGKAN DENGAN PASIEN PENYAKIT KRONIS LAIN DAN ANAK SEHAT

Elvina Evelyne, Prof. dr. Madarina Julia, MPH, Ph.D, Sp.A(K); Prof. dr. Mei Neni Sitaresmi, Ph.D, Sp.A(K)

2026 | Tesis | S2 Kedokteran Klinik

Latar Belakang: Hiperplasia adrenal kongenital (HAK) merupakan penyakit kronis yang memerlukan terapi jangka panjang dan berpotensi memengaruhi kesehatan psikososial anak. Penelitian mengenai masalah perilaku-emosi dan kualitas hidup pada pasien HAK masih menunjukkan hasil yang bervariasi, sedangkan penelitian yang membandingkan pasien HAK dengan anak penyakit kronis lain dan anak sehat masih terbatas.

Tujuan: Membandingkan masalah perilaku-emosi dan kualitas hidup pada pasien HAK, pasien penyakit kronis nefrologi, dan anak sehat, serta menganalisis hubungan antara masalah perilaku-emosi dengan kualitas hidup.

Metode: Penelitian observasional analitik dengan rancangan potong lintang melibatkan 98 anak, terdiri atas 24 pasien HAK, 24 pasien penyakit kronis nefrologi, dan 50 anak sehat. Kelompok pembanding dipilih melalui matching berdasarkan usia dan jenis kelamin. Masalah perilaku-emosi dinilai menggunakan Strengths and Difficulties Questionnaire (SDQ), sedangkan kualitas hidup dinilai menggunakan Pediatric Quality of Life Inventory (PedsQL™ 4.0). Analisis menggunakan uji Chi square/Fisher Exact, Mann–Whitney, korelasi Spearman, dan regresi logistik ordinal.

Hasil: Pasien HAK memiliki proporsi masalah perilaku-emosi yang lebih tinggi dibandingkan pasien penyakit kronis nefrologi maupun anak sehat, terutama pada skor total kesulitan SDQ (p<0>p=0,046). Analisis regresi logistik ordinal menunjukkan bahwa status HAK berhubungan dengan peningkatan kategori total kesulitan SDQ (p<0>p<0>p>0,05). Kesimpulan: Pasien HAK memiliki masalah perilaku-emosi yang lebih tinggi iii dibandingkan pasien penyakit kronis nefrologi maupun anak sehat. Kualitas hidup pasien HAK sebanding dengan pasien penyakit kronis nefrologi, namun lebih rendah dibandingkan anak sehat. Tidak terdapat hubungan yang bermakna antara masalah perilaku-emosi dengan kualitas hidup.

Kata kunci: hiperplasia adrenal kongenital, perilaku-emosi, SDQ, kualitas hidup, PedsQL™ 4.0, penyakit kronis. 

Background: Congenital adrenal hyperplasia (CAH) is a chronic endocrine disorder requiring lifelong treatment that may affect children's psychosocial well-being. Previous studies on behavioural-emotional problems and health-related quality of life (HRQoL) in children with CAH have reported inconsistent findings, while comparisons with children with other chronic diseases and healthy peers remain limited.

Objective: To compare behavioural-emotional problems and HRQoL among children with CAH, chronic nephrological diseases, and healthy controls, and to evaluate the association between behavioural-emotional problems and HRQoL.

Methods: This cross-sectional analytical study included 98 children: 24 with CAH, 24 with chronic nephrological diseases, and 50 healthy controls. The comparison groups were matched to the CAH group by age and sex. Behavioural-emotional problems were assessed using the Strengths and Difficulties Questionnaire (SDQ), and HRQoL was evaluated using the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0). Group comparisons were performed using the Chi-square/Fisher's exact and Mann–Whitney U tests. Spearman's correlation assessed the association between SDQ and PedsQL™ 4.0 scores, while ordinal logistic regression identified factors associated with total SDQ difficulties.

Results: Children with CAH had significantly higher behavioural-emotional problems than those with chronic nephrological diseases and healthy controls, particularly in total SDQ difficulties (p<0 p=0.046).>

Conclusions: Children with CAH have greater behavioural-emotional problems than children with chronic nephrological diseases and healthy peers. Their HRQoL is comparable to that of children with chronic nephrological diseases but lower than that of healthy controls. No significant association was found between behavioural-emotional v problems and HRQoL.

Kata Kunci : congenital adrenal hyperplasia, behavioural-emotional problems, quality of life, PedsQL™, SDQ.