Health-related quality of life in inflammatory bowel disease

The assessment of health-related quality of life may be an adjunct to understanding the chronic illness experience and its effects on health outcomes. In this study, we evaluated health-related quality of life of 150 patients with inflammatory bowel disease (63 ulcerative colitis, 87 Crohn's disease). We used a standardized measure, the Sickness Impact Profile, and a questionnaire we developed that elicits and prioritizes the disease-related worries and concerns of patients with IBD. Our preliminary data indicate that: (1) IBD patients experience moderate functional impairment more in the social and psychological than in the physical dimensions; (2) Crohn's disease patients report psychosocial dysfunction to a greater degree than ulcerative colitis patients; (3) IBD patients report greatest concerns about having surgery, degree of energy, and body image issues such as having an ostomy bag; and (4) functional status and patient concerns correlate better with other measures of health status and previous health care utilization than the physician's rating of disease activity. We believe that questionnaires measuring health-related quality of life (HRQOL) can be used in research and patient care to extend the clinical assessment of patients with IBD. Further work is needed to determine the role of HRQOL relative to disease activity and other physician-based assessments in predicting health outcomes.     

Health-related quality of life in chronic coagulation disorders

Measurement of health-related quality of life (HR-QoL) is used in patients with haemophilia as a way of assessing the effectiveness of health care, especially as cure is not possible. We report the first such study on patients with chronic coagulation disorders in Australia, using The RAND 36-item Health Survey 1.0 (SF-36), a standardized validated questionnaire combined with a semistructured interview. The mean scores for the eight domains of the SF-36 ranged from 52.5 +/- 42.1 for physical role to 80.0 +/- 20.0 for social functioning. Comparison with normative data obtained from the Australian Bureau of Statistics (ABS) demonstrated a reduction in all domains in this population with statistically significant reductions in general health, physical role limitation and vitality. Comparison with other studies indicates that the HR-QoL of patients with haemophilia and von Willebrand's disorder in Australia is comparable with other Western countries, reflecting the overall similar quality of care available to these patients. This study also provides a good cross-sectional view of the psychosocial factors of life in patients in Australia and recognizes the positive family support available to this population, while raising relevant shortcomings in schools and at the workplace that need to be studied further in a controlled manner.     

Health-related quality of life in functional GI disorders: focus on constipation and resource utilization

OBJECTIVE: Functional GI disorders are common in the general population. However, their impact on health status and health resource use in Canada has not been well examined. We describe 1) health-related quality of life in Canadians with functional constipation or other functional GI disorders versus Canadian normative data or those without a functional GI disorder and 2) health resource utilization in subject's self-reporting of constipation. METHODS: An independent research firm was employed to conduct a randomly selected national survey examining GI symptoms and personal health. Household members 18 yr or older were recruited by a random-digit dial technique. Participants were then mailed a questionnaire and data were retrieved by a follow-up phone call. All functional GI disorders were defined using Rome II criteria, and constipation was further defined using self-report. Health-related quality of life was assessed using the Short Form 36. RESULTS: One thousand one hundred forty-nine subjects (49.3% male) with a mean age of 42.2 yr completed the survey. The prevalence of any Rome II functional GI disorder was 61.7%. The rate of functional constipation was 14.9%, whereas that of self-reported constipation was 27.2%. The mean physical and mental component summary and eight subscores of the Short Form 36 were significantly lower (p < 0.05) than Canadian norms for both self-reported constipation and Rome II functional constipation. Subjects with no GI disorder had significantly better Short Form 36 scores than the Canadian norms. The rate of physician visits for constipation was strongly predicted by the physical component of the Short Form 36. Most subjects (66.2%) were satisfied with their current constipation treatment. CONCLUSIONS: Constipation is common in the Canadian population and significantly impairs health-related quality of life. Poor quality of life is an important predictor of health care utilization in these subjects.     

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 patients attending a gastroenterology outpatient clinic: functional disorders versus organic diseases.

BACKGROUND & AIMS: Several gastrointestinal (GI) disorders have major effects on health-related quality of life (HRQOL), but there are few direct comparisons between functional GI disorders and organic GI diseases. This study aimed to compare HRQOL between these 2 groups and to assess factors of importance for HRQOL. METHODS: Three hundred ninety-nine consecutive patients attending a GI outpatient clinic completed HRQOL instruments (Short Form 36 [SF-36] and Psychological General Well-Being index [PGWB]) and the Gastrointestinal Symptom Rating Scale (GSRS). For the analyses we divided the patients into 2 diagnostic groups: functional GI disorders (n = 112) and organic GI diseases (n = 287). RESULTS: Compared with norm values on SF-36 and PGWB, both patient groups exhibited profound reductions in HRQOL. After correcting for age, gender, and disease duration, patients with a functional GI disorder had significantly lower scores than patients with an organic GI disease on 6 of 8 SF-36 domains and 5 of 6 PGWB domains. Vitality and anxiety on PGWB, abdominal pain and diarrhea on GSRS, age, and gender independently contributed to the physical component score of SF-36 (adjusted R(2) = 32%). Patients with a functional GI disorder had more severe reflux, abdominal pain, constipation, and indigestion, but the severity of diarrhea did not differ between the groups. HRQOL was reduced with increasing severity of GI symptoms. CONCLUSION: GI disorders have profound effects on HRQOL, and the impact is greater in patients with functional GI disorders as compared with organic GI diseases. The reduction in HRQOL is associated with the severity of both psychological and GI symptoms.     

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 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 inflammatory bowel disease five years after the initial diagnosis

BACKGROUND: Health-related quality of life (HRQOL) has become an important tool in evaluating patient satisfaction in inflammatory bowel disease (IBD). So far, few prospective follow-up studies have been done to identify variables that influence HRQOL. We aimed to identify demographic and clinical variables that influence HRQOL 5 years after diagnosis in patients with ulcerative colitis (UC) or Crohn disease (CD) included in a prospective follow-up study from 1990 to 1994 (the IBSEN study). METHODS: All patients completed the Inflammatory Bowel Disease Questionnaire (IBDQ), a disease-specific quality-of-life questionnaire translated into Norwegian and validated. We present data from 497 patients (328 UC patients and 169 CD patients, mean age 43.3 years, 48% female). The impact of age, gender, smoking, symptom severity, disease distribution, rheumatic symptoms and surgery on IBD patients' HRQOL was analysed. RESULTS: Women had a reduction in IBDQ total score of 10 points compared to men, CD patients had a reduction of 7.5 compared to UC patients. The patients with moderate/severe symptoms had a 50 points lower score than the patients without symptoms. The patients with rheumatic symptoms had a 10 points lower total score than the patients without these symptoms. All differences were statistically significant. The multiple regression analysis showed that symptom severity, rheumatic symptoms and female gender were the strongest predictors of reduction in HRQOL for both diagnosis groups. CONCLUSION: IBD symptoms, rheumatic symptoms and female gender have a significant influence on patients' HRQOL as measured by IBDQ. This was confirmed by the regression analysis.     

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 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 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 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.