Paediatric Liver, GI and Nutrition service, King's College Hospital NHS Foundation Trust.
Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London.
J Pediatr Gastroenterol Nutr. 2021 Sep 1;73(3):376-384. doi: 10.1097/MPG.0000000000003119.
Autoimmune liver disease is commonly diagnosed during adolescence; a period associated with a higher prevalence of non-adherence, mental health concerns and worse health outcomes. The aim of the study was to explore adherence patterns, mental health and illness perceptions in young people with autoimmune liver disease.
Young people with autoimmune liver disease attending a multidisciplinary young adult clinic (16-25 years) completed an electronically administered questionnaire battery. Demographics and disease-related data were collected.
Sixty-eight (37 female), median age 17.9 (range 15-22) years completed the screening. Only 51.5% of patients were in remission (aspartate and alanine aminotransferase <36 IU//l) whereas 73% self-reported their adherence >80%. Compared to patients in remission, those not in remission required more immunosuppression, were more depressed and worried but reported a better understanding of their illness. A small but significant correlation was found between aspartate aminotransferase/alanine aminotransferase and adherence percentage (r = -0.27, P < 0.05 and r = -0.29, P < 0.05 respectively). Age was inversely associated with adherence (r = -0.31, P < 0.05), and older patients were more worried (r = 0.44, P < 0.001) and emotionally affected by the condition (r = 0.32, P < 0.01). Adherence behaviours such as forgetting to take medications (63%), taking medications more frequently before attending appointments (44%) and not having a routine for medications (31%) were prevalent, 7% reported intentional non-adherence.
Sup-optimal adherence to treatment is common in young people with autoimmune liver disease and associated with mental health problems and certain illness perceptions. Routine exploration of adherence beliefs and barriers to adherence in a non-judgmental, collaborative way is essential to improve outcome in this vulnerable population.
自身免疫性肝病在青少年中常被诊断；这一时期与更高的不依从率、心理健康问题和更差的健康结果相关。本研究旨在探讨自身免疫性肝病青少年的依从模式、心理健康和疾病认知。
参加多学科青年成人诊所（16-25 岁）的自身免疫性肝病年轻人完成了电子管理的问卷。收集了人口统计学和疾病相关数据。
68 名（37 名女性）患者完成了筛选，中位年龄 17.9 岁（范围 15-22 岁）。仅有 51.5%的患者处于缓解期（天冬氨酸和丙氨酸氨基转移酶<36IU//l），而 73%的患者自我报告其依从率>80%。与缓解期患者相比，未缓解期患者需要更多的免疫抑制治疗，抑郁和焦虑程度更高，但对疾病的理解更好。天冬氨酸氨基转移酶/丙氨酸氨基转移酶与依从百分比呈显著负相关（r=-0.27，P<0.05 和 r=-0.29，P<0.05）。年龄与依从性呈负相关（r=-0.31，P<0.05），年龄较大的患者更担心（r=0.44，P<0.001），情绪受病情影响更大（r=0.32，P<0.01）。忘记服药（63%）、在预约前更频繁地服药（44%）和没有服药常规（31%）等服药依从行为很常见，7%的患者报告有故意不依从。
自身免疫性肝病青少年的治疗依从性普遍不理想，与心理健康问题和某些疾病认知有关。以非评判性、协作的方式常规探讨依从信念和依从障碍对于改善这一脆弱人群的结局至关重要。
