Quality of Life in Patients with Cirrhosis—Measurement and Clinical Impact

Purpose of the Review

As understanding of liver disease progression to cirrhosis has expanded, there has also been an acceleration in clinical trials and treatment options for the different underlying causes of cirrhosis to include chronic viral hepatitis, alcoholic and non-alcoholic fatty liver disease. It is imperative that healthcare practitioners fully appreciate the impact of liver disease and treatment from the patients’ and society perspective.

Recent Findings

An important aspect of patient-reported outcomes (PROs) is assessment of health-related quality of life (HRQL) completed using generic or disease-specific instruments. In the past decades, substantial evidence has been complied that demonstrates development of cirrhosis which has a significant negative impact on a patients’ HRQL while effective treatment leads to significant gains in HRQL especially for patients with decompensated cirrhosis.

Summary

Clinicians and clinical investigators must understand the importance of PROs for inclusion in clinical trials to fully assess the impact of cirrhosis on patients and the society.

     

Gender Differences in Health‐Related Quality of Life Among Patients with Asthma

This study has a twofold objective: 1) to explore to what extent suffering from asthma affects the HRQL of men and women differently at several stages of disease severity and 2) to analyze whether the informed poorer HRQL of asthmatic women is related to their higher scores on instruments measuring emotionally disordered symptoms. One hundred fifty‐one outpatient asthmatics (84 women and 67 men) completed the Spanish versions of the Asthma Quality of Life questionnaire (AQL), as well as anxiety and depression inventories. A full history, physical examination, and pulmonary function test were performed on all subjects. Patients were classified into one of four asthma severity categories following the criteria of the Global Initiative on Asthma (GINA). There were no gender differences in sociodemographic variables, asthma duration, GINA, FEV₁ or dyspnea. However, women showed a poorer HRQL than men, as well as high degrees of anxiety and depression. When these data were reanalyzed taking into account the four groups of asthma severity, women only reported a poorer HRQL than men at the intermittent asthma level. The gender differences on depression and anxiety scores were maintained at the three lower severity levels, but not at the most severe asthma degree. When depression and anxiety scores were partialed out, the AQL scores maintained significant relationships with asthma severity, dyspnea, and FEV₁, both in women and men. Therefore, only in men were there also relationships among AQL and sociodemographic data. The best predictor of the women's HRQL was the dyspnea score, whereas in men it was the asthma severity (GINA).     

Catching the Zebra: Clinical Pearls and Pitfalls for the Successful Diagnosis of Zollinger–Ellison Syndrome

Zollinger–Ellison syndrome (ZES) results from an ectopic gastrin-secreting tumor leading to peptic ulcer disease, reflux, and chronic diarrhea. While early recognition portends an excellent prognosis with >80% survival at 15 years, symptoms are often nonspecific making the diagnosis difficult to establish. Diagnosis involves a series of tests, including fasting gastrin, gastric pH, chromogranin A, and secretin stimulation. Performing these tests in the correct sequence and at the proper time is essential to avoid inaccurate results. Tumor localization is equally nuanced. Although providers have classically used ¹¹¹indium-radiolabeled octreotide with somatostatin receptor scintigraphy to evaluate tumor size and metastases, recent studies have shown superior results with newer imaging modalities. In particular, ⁶⁸gallium (⁶⁸Ga)-labeled somatostatin radiotracers (i.e., ⁶⁸Ga-DOTATOC, ⁶⁸Ga-DOTANOC and ⁶⁸Ga-DOTATATE) used with positron emission tomography/computed tomography can provide excellent results. Endoscopic ultrasound is another useful modality, particularly in patients with ZES in the setting of multiple endocrine neoplasia type 1. This review aims to provide clinicians with an overview of ZES with a focus on both clinical presentation and the proper utilization of the various biochemical and imaging tests available.     

Hemobilia due to biliary intraepithelial neoplasia associated with Zollinger–Ellison syndrome

A 58-year-old man was transferred to us from his local hospital because of failure to control his gastrointestinal bleeding by endoscopic hemostasis. Abdominal imaging suggested a hypervascular tumor of the pancreatic head (36?mm diameter), and laboratory testing showed an elevated serum gastrin level (17,800?pg/mL). Gastroduodenal endoscopy revealed multiple duodenal ulcers and active bleeding from the ampulla of Vater. The selective arterial secretagogue injection test suggested a gastrinoma in the pancreatic head, but no gastrinoma in the pancreatic tail. The patient was diagnosed with solitary pancreatic head gastrinoma complicated by hemosuccus pancreaticus, and pancreaticoduodenectomy was performed. Intraoperatively, the diagnosis was changed to primary peripancreatic lymph node gastrinoma without pancreatic involvement. The gastrointestinal bleeding stopped postoperatively and serum gastrin levels returned to normal. Histological examination of the surgical specimens revealed a small submucosal gastrinoma in the duodenum (7?mm diameter). The final diagnosis was microgastrinoma of the duodenum with peripancreatic lymph node metastasis. The cause of bleeding from the ampulla of Vater was initially obscure, but eventually a hemorrhagic erosion with moderate atypia was found in the common bile duct, indicating biliary intraepithelial neoplasia (BilIN). This is the first report of hemobilia due to BilIN with gastrinoma.     

Racial Differences in Disease Activity and Quality of Life in Patients with Crohn’s Disease

Background

The existing literature on racial differences in Crohn’s disease (CD) activity and quality of life (QOL) is limited and extrapolated from surrogate measures.

Aim

The aim of our study was to compare objective markers of disease activity and QOL over time by race.

Study

A clinical data repository of inflammatory bowel disease (IBD) patients at University of Maryland, Baltimore IBD Program, was used. CD patients from 2004 to 2009 were included if they had greater than or equal to two clinic visits with disease activity and QOL scores during the study period. Differences in disease activity and QOL were compared by race over time.

Results

A total of 296 patients with CD met inclusion criteria; of these, 19 % (56/296) were African Americans (AA) and 81 % (240/296) were Caucasian. Baseline disease activity and QOL scores did not differ by race (p > 0.05). Caucasians had a steady decline in disease activity and increase in QOL. AA experienced a similar pattern of change in disease activity and QOL scores over time; however, the declines were not statistically significant between groups. At each time point post-baseline, disease activity and QOL scores were similar between races.

Conclusion

We found that Caucasian and AA patients with CD had similar disease activity and QOL scores at initial presentation and over time. Thus, AA do not represent a more severe subgroup of CD patients to treat. These findings have important implications for clinicians that care for patients with CD.     

Comparison of Quality of Life in Patients with β-Thalassemia Intermedia and β-Thalassemia Major in Southern Iran

Increased life expectancy in patients with β-thalassemia (β-thal) requires healthcare professionals to give greater attention to improving their quality of life (QoL). We aimed to evaluate health-related QoL (HRQoL) and its determinants in patients with β-thal intermedia (β-TI) compared with β-thal major (β-TM). In this cross sectional study, 118 patients with β-TI, referred to the Thalassemia Clinic of Shiraz University of Medical Sciences, Shiraz, Iran, were investigated by convenience sampling from January to June 2014 in southern Iran. A Short Form-36 (SF36) questionnaire was used. We had previously conducted a similar study in 101 patients with β-TM (12 to 38 years). Compared data of the two studies were analyzed. Mean age was 26.5?±?6.5 (12 to 48) years in β-TI and 19.5?±?4.4 (12–38) years in the β-TM group. The best scales of HRQoL were physical functionin (PF) (76.8?±?26.6) and bodily pain (BP) (70.1?±?24.8) in the β-TI group. Males had significantly better score only in vitality dimension compared to females (p?=?0.020). Higher education (p?=?0.023) in univariate analysis and age ≤20 years (B coefficient?=?13, p?=?0.008) in multivariate analysis showed significant relationships with higher total HRQoL score in β-TI. Comparison of β-TI and β-TM, after adjusting for covariates, total HRQoL was similar between the two groups. In evaluating the subscales, only PF showed a better condition in patients with β-TM [adjusted mean difference?=?12.5, 95% confidence interval (95% CI): 5.6–19.3, p?相似文献   

Quality of Life and Depression in Turkish Patients with β-Thalassemia Major: A Cross-Sectional Study

Abstract

Thalassemias are the most common monogenic disorders worldwide. Thalassemia patients experience difficulties in their schooling, finding jobs and/or marriage because of functional and physical limitations caused by this disease. It is expected that the quality of life (QoL) of patients with thalassemia will be lower than those without this disease. The aim of this study was to benefit worldwide thalassemia patients in terms of QoL and mental health. This cross-sectional study was performed in Turkey. The study population consisted of of 57 β-thalassemia major (β-TM) patients and the control group. The short form-36 (SF-36) questionnaire and Beck depression inventory (BDI) were used. The mean age of the patients was 21.6?±?6.6 (age range 15-39) and the male-to-female ratio was 0.7. The mean SF-36 scores of the patient and the control groups were 59.2?±?12.4 and 75.7?±?11.8, and the mean BDI scores of the patients and controls were 13.5?±?6.4 and 6.1?±?3.7, respectively. There was a statistically significant difference between the total SF-36 and BDI scores of patients and controls. We aimed to investigate the effects of the decrease in morbidity and mortality of β-thalassemia (β-thal) due to regular transfusions and chelation therapy on the QoL and mental health of patients. The β-TM patients have a comparatively worse QoL score than the normal population. Improving QoL should be the target of clinicians who are monitoring adolescent or young adult β-TM patients.     

Prognostic Potential of B - type Natriuetic Peptide and Quality of Life in Patients with Chronic Heart Failure

Objectives To study whether change of BNP levels reflect the change of cardiac function and to investigate the short -term prognostic potential of BNP and QOL in patients with CHF.Methods 96 consecutive patients admittedwith CHF between September 2002 and January 2003 were studied, upon entry the study, BNP levels were measured,Patients administered the disease - specificquality of life questionnaire Minnesota living with heart failure questionnaire (LiHFe) within 1 day. BNP levels and administering LiHFe were repeated three months later.Results BNP levels were increased proportional to the severity of cardiac function. Physical domain and total score of LiHFe were significantly correlated to the severity of CHF ( p ＜ 0. 05 ). BNP levels were decreased in improving group ( p = 0.032). In deteriorating group BNP levels increased ( P = 0.043 ). Kaplan -meier analysis according to BNP level cutoff point 150 ng/l, the life curve of higher BNP level group was significantly lower than the lower group ( p = 0. 001 ).In univariate logistic regression, NYHA class, BNP,LVEF, LVEDD, heart size, total score of LiHFe, physical domain of LiHFe and the emotional domain of LiHFe were all significant prognostic factors of CHF (p ＜0.05 for all). While in multiple regression, only BNPlevel( p = 0. 036 ) and the emotional domain of LiHFe( p = 0. 025 ) were independent prognostic factors.Conclusions Change of BNP reflects the treatment efficacy of CHF. BNP and QOL are the two major short- time prognostic factors of the chronic heart failure patients.     

Long-Term Quality of Life in Patients with Crohn’s Disease and Perianal Fistulas: Influence of Fecal Diversion

Purpose Symptomatic perianal fistulas impair quality of life in patients with Crohn’s disease. Fecal diversion improves symptoms but may impair quality of life. This study was designed to compare long-term quality of life in patients with Crohn’s disease with symptomatic perianal fistulas who were treated with or without fecal diversion. Methods From 1996 to 2002, perianal fistulas were treated in 116 patients with Crohn’s disease. A questionnaire, including four quality of life instruments, was mailed to each patient (Short-Form General Health Survey, Gastrointestinal Quality of Life Index, Cleveland Global Quality of Life Score, Short Inflammatory Bowel Disease Questionnaire). Results Questionnaires were returned by 77 of 116 patients (66 percent). Thirty-four of these patients had undergone fecal diversion, whereas 43 had not. Median follow-up was 49 (range, 18–97) months in diverted and 44 (range, 14–98) months in undiverted patients (not significant). In the diverted group, 44 percent complained of Crohn’s disease-related symptoms, which was less compared with 79 percent in undiverted patients (P < 0.05). Diverted patients achieved 68 ± 1 percent of the maximum possible score on the Gastrointestinal Quality of Life Index compared with 60 ± 2 percent in undiverted patients (mean ± standard error of the mean; P < 0.001); diverted patients scored better on the subscale “gastrointestinal symptoms” of the Gastrointestinal Quality of Life Index (81 ± 1 percent vs. 67 ± 2 percent; P < 0.001). There was no difference in the Short Inflammatory Bowel Disease Questionnaire between diverted and undiverted patients except for the subscale “bowel function” (91 ± 2 percent vs. 76 ± 2 percent; P < 0.0001). No difference in quality of life was detected by the Short-Form General Health Survey and Cleveland Global Quality of Life Score. Conclusions In the investigated population of patients with Crohn’s disease, quality of life seems to be similar or potentially superior in diverted patients suffering from perianal fistulas compared with undiverted patients. A diverting stoma, therefore, may improve quality of life in patients with severe perianal Crohn’s disease. Presented at the meeting of the American Gastroenterological Association, Digestive Diseases Week, Los Angeles, California, May 20 to 25, 2006, and published in abstract form Gastroenterology 2006;130(Suppl 2):A620.     

Confirmatory Factor Analysis of the Quality of Life in Alzheimer’s Disease Scale in Patients with Alzheimer’s Disease

Background/Study Context: Quality of life (QoL) has become an important outcome measure in clinical trials for Alzheimer’s disease (AD). The Quality of Life in Alzheimer’s Disease (QoL-AD) Scale is widely used for assessing QoL of patients with AD. This research aims to determine the factor structure of the QoL-AD Scale in AD patients.

Methods: One hundred thirty-nine patients with mild-to-moderate AD were administered the QoL-AD Scale. Based on the model proposed for healthy people, confirmatory factor models were built using modification indices and residual analysis to improve the model fit.

Results: Confirmatory factor analysis indicated poor fit for both the initial model and the single-factor model. Two models showed a good fit: a three-factor model (perceived health, perceived environment and perceived functional ability) and a two-factor model (perceived physical health and perceived psychological health). Because no differences in fit were found between both models, the authors proposed the more parsimonious solution as the best model.

Conclusion: These results provide evidence supporting the construct validity of the QoL-AD Scale. This instrument seems to measure the perception of two related constructs (behavioral competence and environment) and could be used together with instruments measuring psychological well-being and the perception of health.     

Clinical Features and Quality of Life in Patients with Different Phenotypes of Crohn’s Disease of the Ileal Pouch

Purpose Crohn’s disease of the pouch can occur in patients with colectomy and ileal pouch-anal anastomosis performed for ulcerative colitis. The clinical features of inflammatory, fibrostenotic, and fistulizing Crohn’s disease have not been characterized. Methods A total of 73 eligible patients with Crohn’s disease of the pouch, who were seen in the Pouchitis Clinic, were enrolled: 25 with inflammatory Crohn’s disease, 17 with fibrostenotic Crohn’s disease, and 31 with fistulizing Crohn’s disease. The clinical phenotypes of Crohn’s disease were based on a combined assessment of clinical, endoscopic, radiographic, and histologic features. Clinical symptoms, endoscopic and histologic features, and health-related quality-of-life scores were assessed. Results Demographic and clinical features, including preoperative and postoperative parameters, were similar between the three phenotypes of Crohn’s disease of the pouch. The use of nonsteroidal anti-inflammatory drugs, neuropsychiatric drugs, antidiarrheal agents, and Crohn’s disease medicines was not different between the three groups. Predominant symptoms, as expected, were significantly different between the three phenotypes: diarrhea and/or pain in 92 percent of patients with inflammatory Crohn’s disease, obstructive symptoms in 64.7 percent of patients with fibrostenotic Crohn’s disease, and fistular drainage in 51.6 percent of those with fistulizing Crohn’s disease (P < 0.0001). There was no statistical difference in quality-of-life scores between the three phenotypes, adjusted for disease activity. There was no significant correlation between quality-of-life and symptom scores in any of the three groups. Although not statistically significant, patients with fistulizing Crohn’s disease (16.1 percent) tended to have an increased risk for pouch failure compared with inflammatory (8 percent) or fibrostenotic (5.9 percent) Crohn’s disease. Conclusions Predominant symptoms were different in clinical phenotypes of Crohn’s disease. Each of the three phenotypes of Crohn’s disease similarly affected quality-of-life. Fistulizing Crohn’s disease may be associated with a higher risk for pouch failure. Supported by NIH R03 DK 067275 and an American College of Gastroenterology Clinical Research Award. Reprints are not available.     

Quality of Life of Pakistani Children with β-Thalassemia Major

Abstract

Compromised quality of life (QoL) has been reported in individuals suffering from β-thalassemia major (β-TM) in Pakistan. However, insufficient data of its associated psychosocial, physical and other disease-related determinants is available. In an observational analytical study, 200 subjects aged between 5-25 years, were examined using a transfusion-dependent QoL (TranQoL) questionnaire. Clinical records and other related data were also gathered from transfusion center databases. The TranQoL mean score was 48.33?±?5.6, ranging from 53.86?±?13.6 for family functioning and support domain to 39.70?±?18.4 for school and career functioning domain. Age, income, education, pre transfusion hemoglobin (Hb), serum ferritin level, pain, death due to β-thal, monetary issues and pain were significantly associated with TranQoL scores. It was not only the clinical conditions but life alterations, social relationship and psychological events also loomed in improvement of treatment outcomes. Therefore, a tetra-cone of patient, school representatives, family and physicians are needed for better patient prospective.