Tesis

Efektivitas Pendampingan Komprehensif Pasien Sindrom Epilepsi Spasme Infantil terhadap Perbaikan Klinis, Perkembangan Neurologis, dan Status Nutrisi = Effectiveness of Comprehensive Caregiving Support for Patients with Infantile Epileptic Spasms Syndrome on Clinical Improvement, Neurological Development, and Nutritional Status.

Latar belakang: Spasme infantil (SI) adalah sindrom epilepsi yang terjadi pada anak kurang dari 2 tahun dengan outcome terbanyak adalah gangguan neurodevelopmental. Pendampingan komprehensif merupakan salah satu algoritma terapi untuk memenuhi longterm needs. Hingga saat ini, belum ada data yang memadai mengenai pengaruh pendampingan komprehensif terhadap aspek klinis, perkembangan neurologis, status nutrisi, serta pengetahuan pengasuh pasien SI. Tujuan penelitian: Mengevaluasi pengaruh intervensi pendampingan komprehensif pada pasien SI terhadap frekuensi kejang, perkembangan neurologis, status nutrisi, dan pengetahuan pengasuh mengenai spasme infantil. Metode: Metode yang digunakan adalah quasi eksperimental dengan studi klinis intervensi dengan historical control (single arm and double arms) pada populasi pasien SI usia 0-2 tahun dalam rentang Januari 2022–Maret 2025. Pendampingan komprehensif yang diberikan berupa pendampingan melalui webinar edukasi dan pendampingan keberlanjutan yang dilakukan saat pasien datang ke RSCM dan komunikasi melalui Whatsapp. Hasil: Subjek penelitian terdiri dari 40 anak dengan karakteristik dasar yang seimbang antara kelompok intervensi dan kontrol. Proporsi jenis kelamin relatif merata, sebagian besar lahir cukup bulan, dan sekitar sepertiga memiliki riwayat asfiksia. Usia awal timbulnya kejang sebagian besar terjadi sebelum usia 6 bulan pada kelompok intervensi dan setelah 6 bulan pada kelompok kontrol. Pola EEG yang paling banyak ditemukan adalah burst-suppression. Mayoritas ibu memiliki tingkat pendidikan menengah. Sebanyak 36 subjek menerima metilprednisolon oral dosis tinggi selama 14 hari dengan penurunan frekuensi spasme sebesar 24,99% (p=0,000), dilanjutkan OAE (1 OAE: 38,42%; >1 OAE: 55,17%; p=0,000). Terdapat perbaikan signifikan pada WAZ (0,74 SD vs -0,15 SD; p=0,001), WHZ (0,94 SD vs 0,10 SD; p=0,010), dan skor lingkar kepala (0,17 SD vs -0,27 SD; p=0,026). Skor motorik kasar juga meningkat signifikan (3 vs 1,5; p=0,001). Status gizi dan perkembangan motorik kasar lebih baik pada kelompok intervensi di minggu ke-12. Orangtua memberikan respons positif terhadap pendampingan. Kesimpulan: Secara keseluruhan, pendampingan komprehensif jangka pendek selama 12 minggu bermanfaat dalam kontrol spasme, meningkatkan status nutrisi, meningkatkan kemampuan motorik kasar dan meningkatkan pengetahuan pengasuh pasien SI.
Kata kunci: spasme infantil, pendampingan komprehensif, status nutrisi, motorik kasar, personal sosial, bahasa, perkembangan neurologis.


Background: Infantile spasms (IS) are an epileptic syndrome occurring in children under 2 years old, with neurodevelopmental disorders being the most common outcome. Comprehensive caregiver support is one of the therapeutic algorithms aimed at addressing long-term needs. To date, there is limited data on the effects of comprehensive support on clinical aspects, neurological development, nutritional status, and caregiver knowledge in IS patients. Objective: To evaluate the effect of comprehensive support intervention on seizure frequency, neurological development, nutritional status, and caregiver knowledge in patients with infantile spasms. Methods: A quasi-experimental clinical intervention study using both single-arm and double-arm historical controls was conducted among IS patients aged 0–2 years between January 2022 and March 2025. The comprehensive support included educational webinars and ongoing assistance during hospital visits at RSCM and through WhatsApp communication. Results: The study included 40 children with comparable baseline characteristics between the intervention and control groups. The distribution of sex was relatively balanced, most were born at term, and approximately one-third had a history of asphyxia. In the intervention group, seizure onset occurred predominantly before 6 months of age, whereas in the control group it occurred after 6 months. The most common EEG pattern observed was burstsuppression. Most mothers had a middle level of education. A total of 36 subjects received high-dose oral methylprednisolone for 14 days, resulting in a 24,99% reduction in spasm frequency (p=0,000), followed by antiepileptic drug (AED) therapy (1 AED: 38,42%; >1 AED: 55,17%; p=0,000). Significant improvements were observed in WAZ (0,74 SD vs - 0,15 SD; p=0,001), WHZ (0,94 SD vs 0,10 SD; p=0,010), and head circumference z-scores (0,17 SD vs -0,27 SD; p=0,026). Gross motor scores also improved significantly (3 vs 1,5; p=0,001). At week 12, nutritional status and gross motor development were better in the intervention group. Parents gave positive responses to the comprehensive support provided. Conclusion: Short-term comprehensive support over 12 weeks was beneficial in controlling spasms, improving nutritional status, enhancing gross motor function, and increasing caregiver knowledge in patients with infantile spasms.
Keywords: infantile spasms, comprehensive support, nutritional status, gross motor skills, personal social, language, neurological development.