Tesis

Kualitas Hidup Pasien Miopati Inflamasi Idiopatik di Rumah Sakit Cipto Mangunkusumo = Quality of Life in Idiopathic Inflammatory Myopathy Patients at Cipto Mangunkusumo Hospital.

Latar Belakang. Miopati inflamasi idiopatik (MII) merupakan jenis miopati acquired dengan pola kelemahan ekstremitas predominan proksimal dengan prevalensi secara global yaitu 2.4-33.8 per 100.000 per tahun. Di Indonesia, data mengenai prevalensi MII belum diketahui secara pasti namun terdapat studi mengenai profil MII di Rumah Sakit Cipto Mangunkusomo (RSCM) yaitu probable MII sebanyak 33% dan Definite MII sebanyak 67%. Keterlibatan organ ekstraskeletal dan berbagai macam faktor lain dapat berdampak pada aspek fisik, mental dan sosial yang dapat mempengaruhi kualitas hidup pasien MII. Penelitian ini bertujuan untuk mengetahui kualitas hidup pasien MII dan faktor-faktor yang mempengaruhinya Metode. Penelitian ini menggunakan desain potong lintang yang dilakukan pada Januari hingga Mei 2024 di RSUPN Cipto Mangunkusumo Jakarta. Faktor demografis, fenotipe klinis, subtipe, pemeriksaan penunjang kegansan dan pelaku rawat dinilai hubungannya dengan kualitas hidup pasien MII. Penilaian kualitas hidup\dinilai dengan ShortForm Health Survey-36 (SF-36) versi Indonesia yang mengukur delapan domain kualitas hidup: fungsi fisik, peran fisik, nyeri tubuh, kesehatan umum, vitalitas, fungsi sosial, peran emosional, dan kesehatan mental. Hasil. Total subjek pada penelitian ini adalah 58 orang dan didominasi oleh prempuan sebanyak 69% dengan rerata usia adalah 39.09 ± 13.08 tahun. Rerata skor total SF-36 yaitu 51.07 ± 21.67, domain PCS didapatkan rerata 42.13 ± 21.68 dan domain MCS dengan median 56.00 (2-100). Faktor-faktor yang secara signifikan berhubungan dengan kualitas hidup pasien MII baik pada skor total meliputi nyeri, fatigue, keterbatasan fisik, kemampuan berpindah tempat, keterlibatan sendi, ansietas, depresi dan pelaku rawat sementara pada subtipe MII berupa PM memiliki skor kualitas hidup terendah bila dibandingkan dengan subtipe lainnya. Kesimpulan. Berdasarkan skor SF-36 maka kualitas hidup pasien MII lebih rendah bila dibandingkan dengan populasi normal. Beberapa faktor telah diketahui memiliki hubungan yang signifikan terhadap kualitas hidup pasien. Tatalaksana secara komprehensif dan holistik melibatkan multidisiplin sehingga dapat meningkatkan kualitas hidup pasien MII
Kata Kunci. Miopati inflamasi idiopatik; kualitas hidup; SF-36


Background. Idiopathic inflammatory myopathy (MII) is a type of acquired myopathy with proximal predominant limb weakness and a global prevalence of 2.4-33.8 per 100,000 per year. In Indonesia, data on the prevalence of MII is not yet known with certainty, however, a recent study on the profile of MII at Cipto Mangunkusomo Hospital (RSCM) identified 33% of patients with probable MII and 67% of patients with definite MII.. Extraskeletal organ involvement and various other factors can have an impact on physical, mental and social aspects that can affect the quality of life of MII patients. This study aims to determine the quality of life of MII patients and the factors that influence it. Methods. This study used a cross-sectional design conducted from January to May 2024 at Cipto Mangunkusumo Hospital Jakarta. Demographic factors, clinical phenotypes, subtypes, supporting examinations and caregivers were assessed for their association with the quality of life of MII patients. Quality of life assessment was performed according to the recommendations of the International Myositis Assessment and Clinical Studies Group (IMACS), namely the Short-Form Health Survey-36 (SF-36) questionnaire which measures eight quality of life domains: physical function, physical role, body pain, general health, vitality, social function, emotional role, and mental health. Results. The total subjects in this study were 58 people and were dominated by women as much as 69% with an average age of 39.09 ± 13.08 years. Cutaneous manifestaons was the most common organ involvement 72.4% The mean total score of SF- 36 is 51.07 ± 21.67, the PCS domain obtained a mean of 42.13 ± 21.68 and the MCS domain with a median of 56.00 (2-100). Factors associated with the quality of life of MII patients in the total score include pain, fatigue, physical limitations, ability to move, joint involvement, anxiety, depression and perpetrators of care while the MII PM subtype has the lowest quality of life score when compared to other subtypes. Conclusion. Based on SF-36 scores, the quality of life of MII patients is lower in comparisonto the normal population. Several factors have been known to have a significant relationship with the quality of life of patients. Comprehensive and holistic management involving multidisciplinary can improve the quality of life of MII patients.
Keywords. Idiopathic inflammatory myopathy; quality of life; SF-36