The quality of life in Chinese juvenile idiopathic arthritis patients: psychometric properties of the pediatric quality of life inventor generic core scales and rheumatology module

Background Juvenile idiopathic arthritis (JIA) may seriously affects patients’ quality of life (QoL), but it was rarely focused and studied in China, so we explore JIA children’s QoL using Chinese version of the PedsQL4.0 Generic Core and PedsQL3.0 Rheumatology Module scale, and analyzed the psychometric properties of these two Scales among Chinese JIA children. Methods We recruited 180 JIA patients from Children's Hospital Affiliated to Capital Institute of Pediatrics and Hebei Yanda Hospital from July 2018 to August 2019. The questionnaires include information related on JIA, PedsQL4.0 generic core and PedsQL3.0 Rheumatology Module scales. According to the disease type, onset age of and course of JIA, we divided them into different groups, then compared the QoL status among different groups. Moreover, we analyzed the reliability and validity of these two scales in these 180 JIA children. Results The mean score of PedsQL4.0 generic core scale on these 180 patients was 82.85 ± 14.82, for these in active period was 72.05 ± 15.29, in remission period was 89.77 ± 9.23; the QoL score of systemic, polyarticular and oligoarticular JIA patients were 77.05 ± 19.11, 84.33 ± 12.46 and 87.12 ± 10.23. The mean score of PedsQL3.0 Rheumatology Module scale on 180 patients was 91.22 ± 9.45, for these in active period was 84.70 ± 11.37, in remission period was 95.43 ± 4.48; the QoL score of systemic, polyarticular and oligoarticular JIA patients were 89.41 ± 11.54, 89.38 ± 10.08 and 93.71 ± 6.92. In the PedsQL 4.0 Generic Core scale, the α coefficients of total scale and almost every dimension are all greater than 0.8 except for the school activity dimension of 0.589; the correlation coefficients of 22 items’ scores (total 23 items) with the scores of dimensions they belong to are greater than 0.5 (maximum value is 0.864), and the other one is 0.406. In PedsQL3.0 Rheumatology Module scale, except for the treatment and worry dimensions of 0.652 and 0.635, the α coefficients of other dimensions and the total scale are all greater than 0.7; the correlation coefficients of all items’ score were greater than 0.5 (the maximum is 0.933, the minimum is 0.515). Conclusions The QoL of Chinese JIA children is worse than their healthy peers, these in active period and diagnosed as systemic type were undergoing worst quality of life. The reliability and validity of PedsQL 4.0 Generic Core and PedsQL3.0 Rheumatology Module scale in Chinese JIA children are satisfactory, and can be used in clinical and scientific researches.

HUBUNGAN DUKUNGAN KELUARGA DAN DUKUNGAN TEMAN SEBAYA DENGAN KUALITAS HIDUP ANAK PENYANDANG THALASEMIA MAYOR DI RSUD KABUPATEN SUMEDANG

Thalasemia mayor merupakan penyakit kronis terbanyak pada anak di Indonesia. Anak penyandang thalasemia mayor memerlukan transfusi darah dan pengobatan yang terus menerus agar dapat mempertahankan pertumbuhan yang normal. Akibat penyakit dan pengobatan yang terus menerus menimbulkan dampak terhadap anak, baik secara fisik, psikologis maupun sosial yang berpengaruh terhadap kualitas hidupnya. Kualitas hidup anak penyandang thalasemia mayor dipengaruhi oleh berbagai faktor, baik eksternal maupun internal. Tujuan penelitian ini menganalisis hubungan dukungan keluarga dan dukungan teman sebaya dengan kualitas hidup penyandang thalasemia mayor usia sekolah di RSUD Kabupaten Sumedang. Desain penelitian ini adalah analitik korelasional dengan pendekatan cross sectional. Populasi pada penelitian ini adalah penyandang thalasemia usia sekolah. Sampel penelitian berjumlah 55 orang yang diambil dengan teknik total sampling. Pengumpulan data kualitas hidup anak menggunakan instrumen PedsQL generic core scale. Faktor-faktor yang diteliti adalah dukungan keluarga dan dukungan teman sebaya. Data dianalisis secara bivariat dengan menggunakan Uji Korelasi Pearson. Hasil penelitian menunjukkan rerata kualitas hidup penyandang thalasemia mayor usia sekolah sebesar 66,54+12,85. Terdapat hubungan yang bermakna antara kualitas hidup dengan dukungan keluarga (p=0,004, α=0,05) dan dukungan teman sebaya (p=0,000,α=0,05). Kesimpulan penelitian ini bahwa faktor dukungan keluarga dan dukungan teman sebaya merupakan faktor yang berhubungan dengan kualitas hidup anak penyandang thalasemia mayor usia sekolah. Berdasarkan hasil penelitian tersebut implikasi keperawatan yang dapat diterapkan adalah dengan mengoptimalkan dukungan keluarga dan teman sebaya.