Health-related quality of life and psychosocial functioning of adolescents with inflammatory bowel disease

BACKGROUND: This study aimed to study how inflammatory bowel disease (IBD) affects health-related quality of life (HRQoL) during adolescence and to examine how self-esteem influences HRQoL. METHODS: We compared self-esteem, anxiety, and parental reports on behavioral problems in a group of IBD patients to a healthy norm group. Forty children and 38 parents filled out questionnaires separately. Trait anxiety, self-perception, and the data on the Child Behavior Checklist were taken to compare the IBD population with healthy norms, using Student's t tests and 1-sample t tests. Effect sizes were calculated to show the clinical relevance of the differences. Multiple regression analyses were performed to assess the association between disease-related variables and self-perception with HRQoL, anxiety, and problem behavior. RESULTS: The results of this study show that adolescents with IBD, especially boys, have a significantly worse HRQoL and show more internalizing problem behavior compared with healthy peers. An important predictor of HRQoL is self-esteem. CONCLUSIONS: In conclusion, adolescents with IBD are at risk for experiencing problems with their illness. Because self-esteem is an important predictor of HRQoL, it should be taken into account in future interventions for these children.     

Health-related quality of life in children with arthritis

Health status results from an individual's values placed on the interactions among a person's physical state, associated mental perceptions and emotions, resulting behaviors, and environment. Improving health-related quality of life is the goal of all disease treatment. This article reviews the components of health status, summarizes relevant studies in children with rheumatic and related diseases, and considers the role that future studies will play in improving care for children with rheumatic diseases.     

Health-related quality of life in patients with sinusitis

The goal of treatment for patients with sinusitis is the prompt and complete relief of symptoms and consequent improvement in health-related quality of life (HRQL). HRQL has been defined as the component of overall quality of life, determined primarily by the person’s health, which can be influenced by clinical interventions. HRQL is especially useful for conditions like sinusitis in which there is no gold-standard diagnostic test, and "objective" tests correlate poorly with disease severity and outcomes. Patients with sinusitis have measurable, significant decrements in HRQL. Many studies evaluating treatment efficacy in patients with sinusitis have used unvalidated HRQL measures, making their findings, at best, difficult to interpret or, at worst, potentially biased. In this article, we review the definition of HRQL, the meaning and importance of validating HRQL measures, the impact of sinusitis on HRQL, and validated measures of HRQL for use in research and in clinical practice.     

Health-related quality of life in asthma

One aim of caring for adults and children with asthma should be the identification and treatment of the functional impairments that are troublesome to these patients in their daily lives. Studies have shown that correlations between measures of clinical asthma severity and control and health-related quality of life (HRQL) impairment are only weak to moderate. Therefore, HRQL must be measured directly. In recent years, HRQL questionnaires have been developed and validated to measure the functional (physical, social, emotional, and occupational) impairments that are important to both adults and children with asthma. Most questionnaires are now available in a range of languages. More recently, methods have been developed for the clinical interpretation on HRQL data. Assessment of asthma-specific HRQL can be included in both clinical trials and clinical practice, in conjunction with the conventional measures of airway function, to provide a complete picture of patients' health status.     

Health-related quality of life in emphysema

Patients with emphysema may experience reduced health-related quality of life (HRQOL). HRQOL measures have evolved from two different measurement traditions: psychometric theory and decision theory. Psychometric methods typically create a profile of outcomes, whereas decision theory methods offer a summary score on a continuum ranging from 0.0 (for death or worst possible health) to 1.0 (for best possible health). Decision theory methods are better suited for cost-effectiveness studies. Generic HRQOL measures can be applied to any disease population, whereas disease-targeted measures are tailored to a specific clinical condition. Disease-targeted measures are typically more sensitive to clinical change, but cannot offer a comparison basis for different clinical conditions. This article reviews the measurement of HRQOL in patients with emphysema. The National Emphysema Treatment Trial (NETT) offers an example of the application of both generic and disease-targeted, as well as profile and decision theory, methods. The NETT illustrates how HRQOL measures can be used to assess outcomes and estimate cost-effectiveness in a major clinical trial.     

Health-related quality of life of persons with sarcoidosis

STUDY OBJECTIVES: To describe the health-related quality of life (HRQL) and mental health of persons with sarcoidosis, as well as to assess physician-patient agreement about the presence of sarcoidosis symptoms. DESIGN AND SETTING: Cross-sectional study at three university medical center outpatient pulmonary clinics. PATIENTS: One hundred eleven outpatients with sarcoidosis seen between March and July 2002. MEASUREMENTS: The HRQL of sarcoidosis patients was measured using generic and respiratory disease-specific forms (ie, Medical Outcomes Study 36-item short form survey [SF-36] and the St. George respiratory questionnaire [SGRQ], respectively). Depression was assessed using the Center for Epidemiologic Studies depression scale, and stress was assessed with the perceived stress scale four-item questionnaire. The kappa-statistic was calculated to compare physician-patient agreement in assessing sarcoidosis-related symptoms. RESULTS: Patients had moderate-to-severe reductions across all measured domains in perceived HRQL. Those patients who were prescribed oral corticosteroids had lower scores on both the SF-36 and the SGRQ than did those patients who were not. These differences were statistically significant and clinically important. The prevalence of depression was 66%, and that of significant stress was 55%. Spirometry values (FEV(1), 82% predicted; FVC, 86% predicted) were associated neither with HRQL nor with patients' perceived sarcoidosis symptoms, although they were correlated (r = 0.43; p < 0.0001) with physicians' perceptions that patients were symptomatic. Physicians and patients had only fair agreement (kappa-statistic range, 0.24 to 0.36 [by center]) in assessing perceived sarcoidosis symptoms. CONCLUSIONS: Outpatients with sarcoidosis had global reductions in measured HRQL and mental health indexes, although patients receiving therapy with oral corticosteroids had significantly worse HRQL. Experienced physicians based their assessments of patients' sarcoidosis symptoms on measures that were not related to issues of importance to patients. HRQL measurement may provide a unique insight into the impact that sarcoidosis may have on a patient's life that is not captured in traditional physiologic measures.     

Health-related quality of life in community-dwelling men with pneumoconiosis

BACKGROUND: There have been few data on the health-related quality of life (HRQOL) in patients with pneumoconiosis. HRQOL is an important aspect of daily living in patients with industrial diseases. Objectives: To investigate the HRQOL and factors that contribute to the impairment of HRQOL in patients with pneumoconiosis. METHODS: 297 patients with pneumoconiosis were recruited from a community-based case registry. The HRQOL was measured with the St. George's Respiratory Questionnaire (SGRQ). Pulmonary function, comorbidity and psychosocial variables were also assessed. Patients' mood state was evaluated with the Geriatric Depression Scale (GDS). RESULTS: The mean SGRQ symptom, activity, impact and total scores were 38.0 +/- 19.3, 44.5 +/- 21.9, 34.2 +/- 17.9 and 39.4 +/- 17.4, respectively. These figures were lower than those reported in patients with chronic obstructive pulmonary disease who attended chest clinics. The GDS score (r = 0.38), forced expiratory volume in 1 s predicted (FEV(1)% predicted;r = -0.33) and comorbidity (r = 0.21) were the most important predictors of the HRQOL. CONCLUSIONS: Besides lung functions, chest clinicians should consider the impact of mood symptoms and comorbidity on the HRQOL in the management of patients with pneumoconiosis.     

Health-related quality of life in children with rheumatic diseases

PURPOSE OF REVIEW: The effects of therapies on the physical function and health-related quality of life of patients are increasingly considered when treatment decisions are made. For the interpretation of the values of the physical function and health-related quality of life measures, their measurement properties have to be studied. RECENT FINDINGS: Recent advantages include the determination of the minimal clinically important difference of Child Health Assessment Questionnaire, the cross-cultural adaptation of the Child Health Assessment Questionnaire and the Child Health Questionnaire, as well as the development of the Pediatric Quality of Life Inventory. SUMMARY: Despite important advantages in the measurement of physical function and health-related quality of life, additional refinements and validation of the current scales are necessary prior to their use as primary outcome measures for medical treatments.     

Health-related quality of life in patients with pancreatic cancer

BACKGROUND: Pancreatic cancer is an aggressive cancer with low survival time, with health-related quality of life (HRQoL) being of major importance. The aim of our study was to assess both generic and disease-specific HRQoL in patients with pancreatic cancer. METHODS: Patients with pancreatic cancer were consecutively included at admission to hospital. HRQoL was determined with the disease-specific European Organization for Research and Treatment of Cancer (EORTC) and generic EuroQoL (EQ-5D) health status instruments. Scores of patients were compared to those of norm populations. The association of symptoms with overall HRQoL was analysed using linear regression. RESULTS: A total of 45 patients with pancreatic cancer were included. The mean age was 64 years, 53% were females. Of all patients, 44% had metastases at the time of admission. HRQoL was significantly impaired for most EORTC and EQ-5D scales in comparison to norm populations. Symptoms of fatigue (-0.34 regression coefficient; 95% CI -0.63, -0.11) and pain (-0.21; 95% CI -0.39, -0.02) were significantly associated with impaired overall HRQoL. CONCLUSIONS: HRQoL was severely impaired in patients with pancreatic cancer. Symptom control and palliative care appear to be of particular importance.     

Health-related quality of life among adults with diabetes

Diabetes has significant effects on quality of life; however, the interrelationships are complex among the physiologic and psychosocial effects of diabetes, the effects of treatment regimens, and the social and cultural contexts in which we live. These important relationships and effects are being defined, but much additional work is needed to reliably and accurately measure health-related quality of life among subpopulations, and to measure and optimize the effects of increasingly complex and intensive treatments.     

Health-related quality of life in autoimmune hepatitis

Autoimmune hepatitis (AIH) is a severe chronic autoimmune disease and has a significant impact on the patient’s quality of life, in particular regarding psychological problems such as anxiety and depression. Consistent evidence on which patient-related, disease-related or physician-related factors cause health-related quality of life (HRQoL) impairment in patients with AIH is lacking. Current studies on HRQoL in AIH are mainly single-centered, comprising small numbers of patients, and difficult to compare because of the use of different questionnaires, patient populations, and cutoff values. Literature in the pediatric field is sparse, but suggests that children/adolescents with AIH have a lower HRQoL. Knowledge of HRQoL and cohesive factors in AIH are important to improve healthcare for AIH patients, for example by developing an AIH-specific chronic healthcare model. By recognizing the importance of quality of life beyond the concept of biochemical and histological remission, clinicians allow us to seek enhancements and possible interventions in the management of AIH, aiming at improved health.     

Health-related quality of life in HCV-infected patients

In March 2007, a systematic review was conducted of published research on the topic of health-related quality of life (HRQOL) in patients with hepatitis C virus (HCV) infection. Recent studies indicate that significant decrements in HRQOL exist for patients with HCV under many circumstances and arise from multiple sources. Future research is needed on finding interventions that address all sources of reduced HRQOL in patients with HCV, whether or not they are on treatment. It is also important to continue work on identifying the direct mechanisms behind lower HRQOL in patients with HCV.     

Health-related quality of life and gastrointestinal disease

Society is changing rapidly, and new aspects need to be considered when evaluating treatment of disease. Health-related quality of life (HRQL) is a relatively new addition to the tools clinicians use to gain a better understanding of the impact of disease and its treatment. The questions 'What is it?', 'How it is measured?' and 'How can the information be used?' are now better understood than a few years ago. Generic instruments to capture HRQL enable a broad assessment of a range of aspects and can be used to make comparisons between different patient populations. Irrespective of the choice of instrument, they can classify the influence of different factors, such as gender, age, general health status and disease severity. Health-related quality of life assessments have been made in many areas of gastroenterology, such as reflux disease, inflammatory bowel disease and irritable bowel syndrome, to describe the burden of illness and the impact of treatment. Health-related quality of life as a prediction of treatment response is another interesting option. Its ability in the context of surgical intervention and outcomes is also emerging even though more work must be done in this area. Health-related quality of life evaluations, as an additional tool in the management of patients, are here to stay.     

Health-related quality of life and fatigue in patients with adrenal incidentaloma

The objective of the present study was to examine several dimensions of quality of life (QoL) and fatigue in patients with adrenal incidentaloma. This was a case-control study designed to analyze patient outcomes using three validated generic QoL questionnaires, EQ-5D, SF-36, and MFI-20, the results of which were compared to those obtained for age- and sex-matched controls. The study population comprised 139 consecutive patients with nonfunctioning adrenal masses (104 females, 35 males; age 59.1 ± 10.8) and 139 age- and sex-matched controls. Reduced QoL was found in patients with adrenal incidentaloma as compared to controls. Dimensions of QoL that were notably affected included mobility (P = 0.03), performance of usual activities (P = 0.002), and anxiety/depression (P = 0.04) as evaluated using the EQ-5D; physical functioning (P < 0.001), physical role (P < 0.001), general health (P < 0.001), vitality (P = 0.001), social functioning (P = 0.001), and emotional role (P < 0.001) as evaluated using the SF-36; and physical fatigue (P = 0.04) as assessed using the MFI-20 questionnaire. In addition, perceived health on a visual analogue scale was also significantly lower in patients than in controls (64.8 ± 19.2 vs. 77.1 ± 15.1; P < 0.001). Patients with adrenal incidentaloma reported reduced QoL and a higher level of physical fatigue compared to age- and sex-matched controls. This subject will benefit from further studies comparing QoL outcomes of laparoscopic adrenalectomy versus no treatment in patients with adrenal incidentaloma.