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[Latar belakang. Sindrom nefrotik (SN) merupakan penyakit ginjal yang sering ditemukan padaanak. Komplikasi SN terkait perjalanan penyakit, terapi, fisik dan psikososial yangmemengaruhi kualitas hidup.Tujuan. Mendapatkan gambaran tentang kualitas hidup anak SN yang berobat di DepartemenIlmu Kesehatan Anak (IKA) Rumah Sakit Dr. Cipto Mangunkusumo (RSCM) dan faktor yangberhubungan.Metode. Studi deskriptif analitik dengan desain potong lintang di poliklinik nefrologi dan rawatinap Departemen IKA RSCM periode April 2012 – Desember 2013. Subjek berusia 2-18 tahun.Penilaian kualitas hidup menggunakan PedsQLTM 4.0 modul generik dan pola asuhmenggunakan Kuesioner Pola Asuh Anak (KPAA).Hasil. Seratus pasien SN mengikuti penelitian dan didapatkan gangguan kualitas hidupberdasarkan laporan orangtua dan laporan anak 19%. Usia 5-7 tahun, usia 13-18 tahun, statussosioekonomi rendah, dan kondisi relaps jarang pada SN sensitif steroid (SNSS) merupakanfaktor risiko gangguan kualitas hidup pada laporan orangtua (p<0,05) dengan rasio prevalenssecara berurutan 5,22, 7,5, 3,48, 10,33. Penggunaan steroid saat penelitian memiliki hubungandengan kualitas hidup berdasarkan laporan orangtua (p<0,05). Tingkat pendidikan ayah yangsemakin rendah merupakan faktor risiko gangguan kualitas hidup pada laporan anak (p<0,05)dengan rasio prevalens 5,22. Lama diagnosis memiliki hubungan dengan kualitas hidup padalaporan orangtua dan anak (p<0,05). Status sosioekonomi dan pola asuh merupakan faktor risikogangguan kualitas hidup.Simpulan. Usia prasekolah, remaja, kondisi relaps jarang, penggunaan steroid, lama diagnosis,tingkat pendidikan ayah semakin rendah, status sosioekonomi dan pola asuh akan memengaruhikualitas hidup anak SN. Gangguan kualitas hidup pada pasien SN merupakan masalah yang perludiperhatikan dalam tata laksana.;Background. Nephrotic syndrome (NS) is the most common kidney disease in children.Complication of NS is associated with course of disease, therapy, and psychosocial conditionaffecting the quality of life (QoL).Aim. Describing the QoL in children with NS and its associated factors in pediatric outpatientclinic and ward in Dr. Cipto Mangunkusumo Hospital.Method. Cross sectional study was performed in pediatric nephrology clinic and ward in Dr.Cipto Mangunkusumo Hospital, from April 2012 to December 2013. Subjects were 2 to 18 yearsold. Quality of life was assessed using PedsQLTM 4.0 generic module and parenting style wasassessed with Kuesioner Pola Asuh Anak.Results. One hundred subjects participated in this study and QoL impairment was reported in19% subjects based on report from parents and children. Factors associated with impairmentQoL from parent’s report were age group 5 – 7 years old, age group 13 - 18 years old, lowsocioeconomic status, and infrequent relapse condition in steroid sensitive NS (P<0.05), withprevalence ratio 5.22, 7.5, 3.48, 10.33, respectively. Steroid use was also associated with QoLaccording to parent’s report (P<0,05). Lower father’s education was risk factor for QoLimpairment according to patient’s report (P<0,05) with prevalence ratio 5.22. Duration ofdiagnosis was associated with QoL according to parent’s and patient’s report (P<0,05).Socioeconomic status and parenting style were risk factors of QoL impairment in children withNS.Conclusion. Preschool age, teen age, infrequent relapse, steroid use, duration of diagnosis, lowfather’s education, socioeconomic status, and parenting style are associated with QoL in childrenwith NS. Quality of life impairment is important in management of children with NS.Keyword. Nephrotic syndrome, quality of life, PedsQLTM, parenting styleUNIVERSITAS, Background. Nephrotic syndrome (NS) is the most common kidney disease in children.Complication of NS is associated with course of disease, therapy, and psychosocial conditionaffecting the quality of life (QoL).Aim. Describing the QoL in children with NS and its associated factors in pediatric outpatientclinic and ward in Dr. Cipto Mangunkusumo Hospital.Method. Cross sectional study was performed in pediatric nephrology clinic and ward in Dr.Cipto Mangunkusumo Hospital, from April 2012 to December 2013. Subjects were 2 to 18 yearsold. Quality of life was assessed using PedsQLTM 4.0 generic module and parenting style wasassessed with Kuesioner Pola Asuh Anak.Results. One hundred subjects participated in this study and QoL impairment was reported in19% subjects based on report from parents and children. Factors associated with impairmentQoL from parent’s report were age group 5 – 7 years old, age group 13 - 18 years old, lowsocioeconomic status, and infrequent relapse condition in steroid sensitive NS (P<0.05), withprevalence ratio 5.22, 7.5, 3.48, 10.33, respectively. Steroid use was also associated with QoLaccording to parent’s report (P<0,05). Lower father’s education was risk factor for QoLimpairment according to patient’s report (P<0,05) with prevalence ratio 5.22. Duration ofdiagnosis was associated with QoL according to parent’s and patient’s report (P<0,05).Socioeconomic status and parenting style were risk factors of QoL impairment in children withNS.Conclusion. Preschool age, teen age, infrequent relapse, steroid use, duration of diagnosis, lowfather’s education, socioeconomic status, and parenting style are associated with QoL in childrenwith NS. Quality of life impairment is important in management of children with NS.Keyword. Nephrotic syndrome, quality of life, PedsQLTM, parenting styleUNIVERSITAS] |
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