Perceived Stigma in Patients with Autoimmune Hepatitis.

Perceived stigma (PS) adversely impacts psychosocial and disease outcomes in patients with chronic liver diseases (CLD), and those with autoimmune hepatitis (AIH) may be at risk for PS given inaccurate assumptions about the origin of their diagnosis. The aims of the current study are to describe the frequency of PS in patients with AIH, compare rates of PS in AIH to rates of PS in primary biliary cholangitis (PBC) and CLD, and examine demographic correlates of PS. 262 adults with AIH (95% female, Mage = 51.53 years) completed online questionnaires on demographics, disease information, and PS. 54-68% reported PS with themes of selective disclosure, non-disclosure, or hiding diagnosis. PS was higher in those with AIH compared to those with PBC, but lower than those with various CLD. Age was inversely related to PS. Given the results, provider screening of PS and integration of clinical health psychologists may be helpful for identifying PS in patients with AIH.

Decreased health-related quality of life in children and adolescents with autoimmune hepatitis / Redução na qualidade de vida relacionada à saúde em crianças e adolescentes com hepatite autoimune

Abstract Objective: The objective of this study was to evaluate the health-related quality of life in children and adolescents with autoimmune hepatitis. Methods: A cross-sectional assessment with the Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0) was completed for 80 patients with autoimmune hepatitis and 45 healthy controls. Demographic data, prednisone dose, disease remission state, disease severity, and abdominal pain were also evaluated. Results: Based on the child self-reports, physical, emotional, school, and total scores were significantly lower in autoimmune hepatitis patients when compared with controls (p < 0.05). Based on the parental reports, only the physical and total scores were significantly lower in autoimmune hepatitis patients versus controls (p < 0.05). Further analysis in autoimmune hepatitis patients with abdominal pain in the last month revealed significantly lower physical, social, and total median scores (p < 0.05). No differences were observed based on disease remission state or disease severity (p > 0.05). Autoimmune hepatitis patients who received a prednisone dose below 0.16 mg/kg/day at the time of the interview showed significantly higher physical scores than those who received a dose similar to or above 0.16 mg/kg/day (87.5 [50-100] vs. 75 [15.63-100], p = 0.006). Conclusions: Reduced scores in the physical, emotional, and school domains were observed in pediatric autoimmune hepatitis patients compared to control patients. Abdominal pain and corticosteroid dose negatively influenced the health-related quality of life in children and adolescents with autoimmune hepatitis.

Resumo Objetivo: Avaliar a qualidade de vida relacionada à saúde em crianças e adolescentes com hepatite autoimune (HAI). Métodos: Foi concluída uma avaliação transversal com o Inventário Pediátrico de Qualidade de Vida 4.0 (PedsQL 4.0) para 80 pacientes com hepatite autoimune e 45 controles saudáveis. Os dados demográficos, a dose de prednisona, o estado de remissão da doença, a gravidade da doença e dor abdominal também foram avaliados. Resultados: Com base nos autorrelatos das crianças, os escores físico, emocional, escolar e total foram significativamente menores em pacientes com hepatite autoimune em comparação com os controles (p < 0,05). Com base nos relatos dos pais, apenas os escores físico e total foram significativamente menores em pacientes com hepatite autoimune em comparação com os controles (p < 0,05). Uma análise adicional em pacientes com hepatite autoimune com dor abdominal no mês passado revelou escores médios físico, social e total significativamente menores (p < 0,05). Nenhuma diferença foi observada com base no estado de remissão da doença ou na gravidade da doença (p > 0,05). Os pacientes com hepatite autoimune que receberam uma dose de prednisona abaixo de 0,16 mg/kg/dia no momento da entrevista mostraram escores físicos significativamente maiores que os que receberam uma dose semelhante ou acima de 0,16 mg/kg/dia [87,5 (50-100) em comparação com 75 (15,63-100), p = 0,006]. Conclusões: Escores reduzidos nos domínios físico, emocional e escolar foram observados em pacientes pediátricos com hepatite autoimune em comparação com pacientes do grupo de controle. Dor abdominal e dose de corticosteroide influenciaram negativamente a qualidade de vida relacionada à saúde em crianças e adolescentes com hepatite autoimune.

Decreased health-related quality of life in children and adolescents with autoimmune hepatitis.

OBJECTIVE: The objective of this study was to evaluate the health-related quality of life in children and adolescents with autoimmune hepatitis. METHODS: A cross-sectional assessment with the Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0) was completed for 80 patients with autoimmune hepatitis and 45 healthy controls. Demographic data, prednisone dose, disease remission state, disease severity, and abdominal pain were also evaluated. RESULTS: Based on the child self-reports, physical, emotional, school, and total scores were significantly lower in autoimmune hepatitis patients when compared with controls (p<0.05). Based on the parental reports, only the physical and total scores were significantly lower in autoimmune hepatitis patients versus controls (p<0.05). Further analysis in autoimmune hepatitis patients with abdominal pain in the last month revealed significantly lower physical, social, and total median scores (p<0.05). No differences were observed based on disease remission state or disease severity (p>0.05). Autoimmune hepatitis patients who received a prednisone dose below 0.16mg/kg/day at the time of the interview showed significantly higher physical scores than those who received a dose similar to or above 0.16mg/kg/day (87.5 [50-100] vs. 75 [15.63-100], p=0.006). CONCLUSIONS: Reduced scores in the physical, emotional, and school domains were observed in pediatric autoimmune hepatitis patients compared to control patients. Abdominal pain and corticosteroid dose negatively influenced the health-related quality of life in children and adolescents with autoimmune hepatitis.

Neuropsychiatric symptoms in hepatitis C patients resemble those of patients with autoimmune liver disease but are different from those in hepatitis B patients.

Chronic fatigue, mood alterations and cognitive impairment are frequent accessory symptoms of HCV infection. Fatigue and mood alterations have also been observed in autoimmune hepatitis (AIH) and primary biliary cholangitis (PBC), but not in hepatitis B virus (HBV)-infection, thus indicating an autoimmune response as possible cause of HCV infection-associated encephalopathy. Data, however, are sparse. This study aimed to prove that HCV patients feature similar to those with autoimmune liver disease but contrary to HBV patients regarding neuropsychiatric symptoms. A total of 132 noncirrhotic patients (HCV: 46, HBV: 22, AIH: 27, PBC: 29, AIH/PBC: 8) completed questionnaires addressing the domains mentioned above. Eighty-eight underwent a comprehensive neuropsychological assessment. Patient groups were compared among each other and to 33 healthy controls. Fatigue, anxiety and depression scores were significantly increased, and the SF-36 mental score significantly decreased in all patient groups compared to controls. Fatigue was significantly more pronounced in HCV than in HBV patients. HCV patients scored significantly worse than HBV patients but not AIH and PBC patients in the SF-36. HCV, AIH and PBC but not HBV patients did significantly worse than controls in word learning. Recognition of words was impaired in HCV, AIH and PBC patients and recognition of figures in HCV patients, exclusively (P ≤ 0.002). HCV patients did also worse than controls and HBV patients concerning alertness and working memory (P ≤ 0.001). The neuropsychiatric profiles of HCV patients are similar to those of AIH and PBC patients but differ from those of HBV patients, suggesting an autoimmune response as a possible cause for these differences.

Autoimmune hepatitis exerts a profound, negative effect on health-related quality of life: A prospective, single-centre study.

BACKGROUND AND AIMS: Autoimmune hepatitis is a progressive chronic liver disease. Health-related quality of life in autoimmune hepatitis has not attracted much attention so far. We prospectively assessed various aspects of health-related quality of life in a well characterized group of patients with autoimmune hepatitis. METHODS: In total, 140 patients with autoimmune hepatitis (mean age 40 ± 17 years) and 170 controls (mean age 36 ± 14 years) were included. Health-related quality of life was evaluated with following questionnaires: The Short Form (36) Health Survey, Modified Fatigue Impact Score, State-Trait Anxiety Inventory and Patient Health Questionnaire-9 assessing depression. RESULTS: Patients with autoimmune hepatitis showed a significant impairment of health-related quality of life in all, but one, domains of The Short Form (36) Health Survey. Autoimmune hepatitis was associated with pronounced physical fatigue (P < 0.001), anxiety (P < 0.001) and depression (P < 0.001). As compared to males, female patients demonstrated greater impairment of physical aspects of The Short Form (36) Health Survey and Modified Fatigue Impact Score. Twenty-seven patients (19%) had moderate (Patient Health Questionnaire-9 >10) and 14 (10%) moderately severe depression (Patient Health Questionnaire-9 >15). Depression showed a very strong correlation with chronic fatigue (R = 0.68; P < 0.001); physical and mental components of The Short Form (36) Health Survey (R = 0.52/0.68 respectively; P < 0.001) and anxiety (R = 0.47; P < 0.001). There was a trend towards better life's quality in patients treated with budesonide in some aspects of their health-related quality of life. Duration of the disease, age at diagnosis, liver fibrosis and the presence of cirrhosis were not associated with health-related quality of life. CONCLUSIONS: Health-related quality of life is significantly impaired in patients with autoimmune hepatitis. Depression seems to be a dominant symptom affecting their well-being, not associated with clinical and biochemical features of the disease.

Health-related quality of life in patients with autoimmune hepatitis: A questionnaire survey.

AIM: Health-related quality of life is impaired in patients with autoimmune hepatitis, but the association between health-related quality of life and patients' backgrounds remains unknown. We assessed health-related quality of life in patients with autoimmune hepatitis and identified factors associated with its impairment. METHODS: We assessed health-related quality of life in patients with autoimmune hepatitis, patients with chronic hepatitis C, and healthy subjects using the Japanese version of the Chronic Liver Disease Questionnaire and the 36-Item Short Form Survey. We compared health-related quality of life in patients with autoimmune hepatitis with that of patients with chronic hepatitis C and healthy subjects. RESULTS: A total of 265 patients with autoimmune hepatitis, 88 patients with chronic hepatitis C, and 97 healthy subjects were enrolled; most patients were women. The median ages of patients were 65, 66, and 57 years, respectively. Of these patients with autoimmune hepatitis, 10.6% and 57.0% had cirrhosis and comorbid diseases, respectively. The overall Chronic Liver Disease Questionnaire scores (5.5 vs. 6.2, P < 0.001) and physical (48.1 vs. 54.2, P < 0.001) and mental (51.8 vs. 55.0, P = 0.004) component summaries of 36-Item Short Form Survey were significantly lower in patients with autoimmune hepatitis than in healthy subjects, and similar to scores in patients with chronic hepatitis C. Having cirrhosis, comorbid diseases, and treatment for autoimmune hepatitis were associated with impaired health-related quality of life among patients with autoimmune hepatitis. In particular, prednisolone use was associated with lower scores on the worry domain of the Chronic Liver Disease Questionnaire. CONCLUSIONS: Patients with autoimmune hepatitis showed impairment in health-related quality of life, which was associated with not only disease progression, but also comorbid diseases and treatment. Ways to improve health-related quality of life should be considered in patients with AIH when disease outcome is not favorable and when using prednisolone.

The Impact of Autoimmune Hepatitis and Its Treatment on Health Utility.

Patient reporting suggests that the physical and psychological effects of autoimmune hepatitis (AIH) can be substantial. However, health-related quality of life (HRQOL) in patients with AIH remains incompletely characterized, and health utility remains to be explored. Treatment for AIH often includes the use of corticosteroids, which are agents that can be associated with significant adverse effects. Here we explore the impact of AIH and its treatments on patient-reported HRQOL and health utility in a large cohort of prevalent cases from the United Kingdom Autoimmune Hepatitis (UK-AIH) national study. Data were collected from 990 adult participants with a clinical diagnosis of AIH using validated HRQOL tools including the European Quality-of-Life 5-Dimension 5-Level (EQ-5D-5L) and clinical data forms. The EQ-5D-5L dimension scores were compared with UK population norms and with a disease control cohort with primary biliary cholangitis (PBC). Within the AIH cohort, regression analysis was used to explore associations between HRQOL and demographic and clinical variables with a particular focus on the impact of AIH therapies including corticosteroid use. HRQOL, measured by the EQ-5D-5L utility index, is shown to be significantly impaired in our cohort of AIH patients compared with population norms. Within the AIH cohort, corticosteroid use was found to be significantly associated with impaired HRQOL, even when controlling for biochemical disease activity status. CONCLUSION: Our data show evidence of HRQOL impairment in a large cohort of AIH patients compared with the general population. Furthermore, corticosteroid use is strongly associated with decreased HRQOL, independent of remission status. This highlights the need for better corticosteroid-free therapy approaches and it emphasizes the need for future novel therapeutic trials in AIH. (Hepatology 2018; 00:000-000).

Autoimmune Hepatitis in Children and Adolescents: Effect on Quality of Life.

OBJECTIVES: 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). METHODS: 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. RESULTS: A total of 43 patients (mean age, 15.0 ±â€Š3.9 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 (ß = 0.39, P < 0.01), extrahepatic autoimmune diseases (ß = 0.27, P < 0.05), and a dislike of taking medication (ß = 0.40, P < 0.01) negatively affected the psychosocial PedsQL 4.0 score, and the presence of symptoms (ß = 0.40, P < 0.01) negatively affected the total PedsQL 4.0 score. CONCLUSIONS: 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.

Health-related quality of life, depression, and anxiety in patients with autoimmune hepatitis.

BACKGROUND & AIMS: Improving health related quality of life (HrQoL) in patients with chronic diseases such as autoimmune hepatitis (AIH) should be a major treatment goal. However, little is known on the HrQoL in patients with AIH, and the topic is not given attention in current practice guidelines. We therefore conducted a single center study evaluating HrQoL in 103 consecutive outpatients with AIH. METHODS: Patient-reported HrQoL data were analysed in relation to clinical disease parameters and compared to representative data of the German population as well as control patients. RESULTS: Based on patient-reported data, a major depressive syndrome (10.8%) was found to be five times more frequent in AIH patients compared to the general population (p<0.001). The rate of severe symptoms of anxiety was also found to be significantly increased compared to the general population (p=0.006). In seven of the eleven patients who scored for a major depressive syndrome a psychiatric comorbidity had not been diagnosed before. Major factors associated with depression and anxiety were concerns with regard to the progression of the liver disease. CONCLUSIONS: This study identified--for the first time--a high rate of previously unrecognized severe symptoms of depression and anxiety in patients with AIH. Of importance for daily clinical practice, the factors associated with these symptoms may in part be amenable to targeted counselling and adequate treatment of the disease, thereby offering the chance to improve the care and HrQoL of AIH-patients.

Health-related quality of life in children with autoimmune liver disease.

BACKGROUND AND AIM: Health-related quality of life (HRQOL), a pivotal outcome indicator of health care interventions, has not been evaluated in children with autoimmune liver disease (AILD). The aim of this study was to determine HRQOL in children with AILD and the factors affecting it. METHODS: The Pediatric Quality Of Life Inventory, generic core scale, was used to collect HRQOL data on children with AILD. Specific liver disease-related questions were added. RESULTS: Survey responses were received from 30 of 40 patients. Patients' mean age at diagnosis was 11.6 ± 4.5 years, with M:F ratio of 1:1.3, and AILD for average of 4.6 ± 4.3 years. Seventy-three percent of patients had advanced liver disease. Mean overall health summary scores for the group per child and parent reports were 71.6 ± 19.0 and 71.3 ± 17.1, respectively, which were lower than healthy controls: 83.9 ± 12.5 and 82.3 ± 15.6 (P = 0.002). Frequent liver-related symptoms were associated with impaired physical and school functioning by child (P = 0.034 and 0.047) and parent reports (P = 0.051 and P = 0.018). Abdominal pain, fatigue, and psychological symptoms were found to adversely affect the HRQOL. Although it was difficult to estimate the effect of individual features of advanced liver disease such as cirrhosis, history of upper gastrointestinal bleed, and portal hypertension on the HRQOL, because of a relatively small sample size, the presence of ascites revealed lower social functioning score per parent report (P = 0.036). In an analysis of patients with any of the above complications versus those without, however, children reported lower social functioning scores (P = 0.018). There were no differences in HRQOL scores in children with autoimmune hepatitis versus primary sclerosing cholangitis versus autoimmune hepatitis/primary sclerosing cholangitis overlap syndrome. CONCLUSIONS: First study to date shows that AILD in children significantly affects HRQOL, especially with frequent liver disease-related symptoms, even in early stages of disease. Findings need to be validated in larger, multicenter studies and will help practitioners understand their patients better and optimize care.

Identifying opportunities to improve management of autoimmune hepatitis: evaluation of drug adherence and psychosocial factors.

BACKGROUND & AIMS: Recognizing the importance of adherence to therapy in autoimmune hepatitis (AIH) is critical for patient care and avoidance of unnecessary intervention. The influence of psychosocial factors on treatment adherence needs better understanding and prominence. We sought to determine the association between anxiety, depressive symptoms, and avoidant relationship style on self-reported immunosuppressant medication adherence and treatment response in patients with AIH. METHODS: Fifty two patients with AIH were assessed using the Patient Health Questionnaire-9, the Generalized Anxiety Disorder-7, the Experiences in Close Relationship Scale (ECR) and a visual analogue scale to measure self-reported adherence. Laboratory markers of adherence and immunosuppressant treatment response were recorded. Chi-square Fisher's exact or Wilcox rank sum tests were used for comparison between groups. RESULTS: Treatment responders compared to non-responders were older (p=0.035), had normal or mild score ranges for anxiety and depression (p=0.025) and were significantly more likely to report >80% treatment adherence (p=0.007). Non-responders had higher anxiety symptoms (p=0.025), and significantly higher ECR-avoidance scores (p=0.023), suggestive of a tendency towards a more avoidant relationship style. CONCLUSIONS: We formally document that patients with AIH who have higher depressive and anxiety symptoms and avoidant relationship styles are more likely to be non-adherent to AIH therapy. We reiterate the need for early recognition and treatment of anxiety and depression in patients with AIH, stress the need for treatment adherence and highlight the need for formal evaluation of these factors in trials of therapy targeting apparent treatment non-responders.

Psychological stress is associated with relapse in type 1 autoimmune hepatitis.

BACKGROUND/AIM: The pathophysiological basis of relapse and recrudescence in type 1 autoimmune hepatitis (AIH) is poorly understood. This study examined factors associated with biochemical relapse in type 1 AIH, and specifically addressed whether psychological stress was associated with a relapsing-remitting disease course. METHODS: A case-control study design was used to analyse 33 patients with AIH followed at the Yale Liver Clinic during a 4-year period. Twenty-two patients with 46 episodes of relapse or recrudescence (cases) and 11 controls in long-term remission were identified during this period. Clinical variables were collected to establish factors associated with relapse. All patients were administered the Social Readjustment Rating Scale (SRRS), a psychological stress questionnaire consisting of 43 weighted life events. Stress is judged to be low when the score is 0-150; mild, 151-200; moderate, 201-300 and major >300. RESULTS: AST, ALT, prednisone dose and SRRS score were all significantly different between cases and controls. The mean SRRS score for cases with relapse/recrudescence was 239 vs 152 for the control group, P=0.048 and remained significant on ancova analysis which accounted for covariables, P=0.05. Cases also identified additional stressors not represented in the SRRS at a significantly higher rate than controls. Conversely, the controls spontaneously identified coping strategies that may have allowed them to manage stress more effectively. CONCLUSION: Psychological stress is a significant factor that is associated with relapse in type 1 autoimmune hepatitis. Management of AIH may benefit from strategies to reduce stress and promote psychological well being.

Hepatitis autoinmune en niños: diagnostico / Autoimmune hepatitis in children: diagnosis

El diagnóstico de la hepatitis autoinmune (HAI), se basa en una serie de criterios definidos por elGrupo Internacional de HAI (IAIHG) que permite clasificarla como HAI probable o definitiva. Un criterio clave para el diagnóstico de la HAI es la detección de ANA, SMA, y anti- LKM-1 por inmunofluorescencia indirecta. Otros anticuerpos menos frecuentes probados, pero de importancia diagnóstica en HAI pediátrica incluyen los anticuerpos tipo: citosol 1 hígado (LC-1), anti- citoplasma de los neutrófilos (ANCA) y el antígeno soluble hepático (SLA). La Ig G está usualmente elevada en ambos tipos de HAI, cerca del 15% de niños con HAI I y el 25% de niños con HAI tipo II tienen valores normales. La biopsia hepática es necesaria para establecer el diagnóstico de HAI.

The diagnosis of autoimmune hepatitis (HAI), is based on a set of criteria defined by the International HAI Group (IAIHG) that allows classified as a probable or definite HAI. A key criterion for the diagnosis of HAI is the detection of ANA, SMA, and anti-LKM-1 by indirectimmunofluorescence. Other less common antibodies tested, but important diagnostic tool in pediatric HAI include antibodies such as: liver cytosol 1 (LC-1), anti-neutrophil cytoplasmic (ANCA) and soluble liver antigen (SLA). The Ig G is usually high in both types of HAI, about 15% of children with HAI I and 25% of children with HAI type II are normal. Liver biopsy is necessary to establish the diagnosis of HAI.

Anxiety levels observed in candidates for liver transplantation.

INTRODUCTION: Anxiety can be considered an emotional state that does not present itself at the same intensity in all patients, and can be classified into 3 levels: mild, moderate, and severe. The patient, upon entering the waiting list for transplantation, reflects on the decision taken, which leaves him constantly anxious about the idea of possible death. OBJECTIVE: This study had the aim of evaluating the degree of anxiety observed in orthotopic liver transplantation (OLT) candidates and whether there was a correlation between anxiety and etiologic diagnosis. METHODS: This study was a prospective study where the patients underwent psychological evaluation by Beck Anxiety Inventory (BAI). The anxiety level was minimal, mild, moderate, or severe. The Model for End-Stage Liver Disease (MELD) score and etiology were recorded. RESULTS: The level of anxiety found were as follows: 55% minimal, 27% mild, 12% moderate, and 7% severe. The correlation between level of anxiety and etiologic diagnosis showed that 71% of patients with alcoholic cirrhosis and 60% of those with liver cancer showed a minimal degree of anxiety and 27% of patients with autoimmune cirrhosis had severe anxiety. CONCLUSION: We found that in patients with autoimmune hepatitis, the degree of anxiety was more pronounced. It is believed that the absence of physical symptoms is an important factor when observing anxiety in OLT candidates.

[Evaluation of quality of life in children with chronic hepatitis]. / Studiu de evaluare a calitatii vietii la copilul cu hepatita cronica.

UNLABELLED: The evolution of chronic viral and non-viral hepatitis in children, and the response to therapy influence the quality of life and the outcome of these patients and tehir family. MATERIAL AND METHOD: This study analyzes the quality of life in children with chronic liver disease, using the records of 45 patients hospitalised in the Hepatology Department of "Sf. Maria" Hospital of Children in Iasi. Data were customised using Kindle questionnaire, measuring the scores for quality of life in children and adolescents with chronic disease. Patients with chronic viral and autoimmune hepatitis hospitalised in the clinic were interrogated during three months (May-July 2008). All ethical aspects of clinical research were aproved and no child was harmed during the study. The questionnaire for children with chronic viral hepatitis, mostly with B virus, had a good aplicability, being simple and easy to respond. RESULTS: The results showed a positive perception of the disease, probably because of the young age (under 17) and the fact that the liver disfunction was at low rates. The study of quality of life in children with chronic disease can be an efficient method for treatment efficiency evaluation.

Generic and disease-specific health related quality of life of liver patients with various aetiologies: a survey.

Most studies on health related quality of life (HRQoL) of chronic liver patients were done in small clinical populations or restricted to one aetiology or disease stage. There is still a need for a study in a large liver patient population with various aetiologies and disease stages, approaching a population-based study. We evaluated the impact of liver disease aetiology on generic HRQoL, disease-specific HRQoL and fatigue and we compared HRQoL and fatigue between aetiological groups and healthy Dutch controls. Members of the Dutch liver patient association completed the Liver Disease Symptom Index, Short Form-36, and Multidimensional Fatigue Index-20. We compared the HRQoL between patients with viral hepatitis, autoimmune hepatitis, cholestatic diseases, hemochromatosis and other liver diseases by linear, ordinal and logistic regression, corrected for disease stage and other significant factors. Viral hepatitis patients showed a worse mental health than other aetiological groups. Hemochromatosis patients demonstrated 17% more bodily pain than viral hepatitis patients and the strongest decrease in role emotional health with increasing age. Aetiological groups showed a worse generic HRQoL and more fatigue than controls. In conclusion, viral hepatitis and hemochromatosis patients have a more impaired HRQoL than patients of other liver disease aetiological groups.

Prospective analysis of nonadherence in autoimmune hepatitis: a common problem.

OBJECTIVES: To prospectively assess nonadherence to medications, the relationship between nonadherence and medical outcome and the relationship between a psychiatric risk factor (posttraumatic stress) and nonadherence in patients with a diagnosis of autoimmune hepatitis. PATIENTS AND METHODS: Data were obtained in children with autoimmune hepatitis, who had consented to prospective monitoring of adherence, during 1 year of follow-up in our pediatric liver program. An electronic monitoring device as well as posttransplant trough blood levels of tacrolimus was used to evaluate adherence. A validated self-report questionnaire was used to assess posttraumatic stress. The medical outcome measure was the maximal alanine transaminase (ALT) for each monitored patient. RESULTS: Of 37 pediatric patients, 34 (15 posttransplant) enrolled. Fourteen (41%) used the monitoring device as directed. Monitor readings ranged between 28% and 94% of optimal adherence (100%). No patient took the medications exactly as prescribed. Electronic monitoring device readings correlated inversely with maximal ALT (P = 0.03, r = -0.59), and were also correlated with the tacrolimus level variability as a measure of adherence (P = 0.04, r = -0.72). Posttraumatic stress disorder questionnaire scores were correlated with both measures of adherence (for electronic monitoring, P = 0.02, r = -0.70, for tacrolimus levels, P = 0.03, r = 0.62). CONCLUSIONS: Nonadherence to immunosuppressants was common in this cohort, and it correlated with higher maximal ALT. Nonadherence is therefore an important risk factor for poor outcome in patients with autoimmune hepatitis. Posttraumatic stress symptoms, which were correlated with nonadherence, may serve as a focus for adherence-improving interventions.