Distrito Federal Base Hospital.
Brasília José Alencar Children's Hospital.
J Pediatr Gastroenterol Nutr. 2018 Jun;66(6):861-865. doi: 10.1097/MPG.0000000000001930.
The aim of this study was to evaluate the effect of autoimmune hepatitis (AIH) on the quality of life of children and adolescents and to identify which variables effect health-related quality of life (HRQoL).
The Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0) was used to evaluate HRQoL. In addition, a questionnaire was applied which included signs, symptoms, and use of medications.
A total of 43 patients (mean age, 15.0 ± 3.9 years; 65.1% girls; 90.7% with type 1 AIH) was evaluated. Advanced liver disease was present in 30.2%, and 18.6% had sclerosing cholangitis. Treatment was effective in 93.1% of patients. The lowest HRQoL scores were associated with the school (67.7), emotional (68.2), and psychosocial (75.5) domains. Compared with healthy children, patients presented lower scores on the total, psychosocial, emotional, and school domains (P < 0.05). The presence of symptoms (β = 0.39, P < 0.01), extrahepatic autoimmune diseases (β = 0.27, P < 0.05), and a dislike of taking medication (β = 0.40, P < 0.01) negatively affected the psychosocial PedsQL 4.0 score, and the presence of symptoms (β = 0.40, P < 0.01) negatively affected the total PedsQL 4.0 score.
AIH has a significant and negative effect on HRQoL among children and adolescents. The presence of symptoms, extrahepatic autoimmune diseases, and a dislike of taking medication were associated with the worsening of HRQoL. Providers should work with professionals trained to improve QoL to help improve treatment adherence and disease outcomes.
本研究旨在评估自身免疫性肝炎(AIH)对儿童和青少年生活质量的影响,并确定哪些变量会影响健康相关生活质量(HRQoL)。
使用儿科生活质量量表 4.0(PedsQL 4.0)评估 HRQoL。此外,还应用了一份问卷,其中包括体征、症状和药物使用情况。
共评估了 43 例患者(平均年龄 15.0±3.9 岁;65.1%为女孩;90.7%为 1 型 AIH)。30.2%存在晚期肝病,18.6%患有硬化性胆管炎。93.1%的患者治疗有效。HRQoL 评分最低的是学校(67.7)、情绪(68.2)和心理社会(75.5)领域。与健康儿童相比,患者在总分、心理社会、情绪和学校领域的得分较低(P<0.05)。存在症状(β=0.39,P<0.01)、肝外自身免疫性疾病(β=0.27,P<0.05)和不喜欢服药(β=0.40,P<0.01)会对心理社会 PedsQL 4.0 评分产生负面影响,而存在症状(β=0.40,P<0.01)会对总 PedsQL 4.0 评分产生负面影响。
AIH 对儿童和青少年的 HRQoL 有显著的负面影响。存在症状、肝外自身免疫性疾病和不喜欢服药与 HRQoL 恶化相关。医务人员应与接受过改善 QoL 培训的专业人员合作,以帮助提高治疗依从性和疾病结局。