Spondyloarthritis und Lebensqualität

To measure the disease activity of spondyloarthritides (SpA), quality of life is assessed in addition to inflammation and functional impairment. To measure quality of life in ankylosing spondylitis (AS), the generic measurement instruments SF-36, SF-12 and EQ-5D are available in German, whereby the SF-36 is the instrument primarily used in clinical investigations. Compared to the normal population, AS patients experience a reduced quality of life. In woman and patients with a poor educational background, quality of life was particularly reduced. Measuring quality of life is also a generally recognised part of evaluating psoriasis arthritis (PsA), for which only SF-36 and EQ-5D are available in German-speaking countries. The instrument most frequently used in clinical studies is SF-36. The quality of life in PsA patients, in terms of both physical and mental components, was found to be significantly lower than in the normal population. Although PsA patients shared a similar reduction in quality of life to AS patients, they nevertheless enjoyed a better quality of life than rheumatoid arthritis patients.     

Comprehensive assessment of clinical outcome and quality of life after total shoulder arthroplasty: usefulness and validity of subjective outcome measures

OBJECTIVE: To explore the physiometric and psychometric properties of clinical, generic, and condition-specific assessment instruments. To describe patients' outcome after total shoulder arthroplasty. METHODS: Forty-three patients were assessed in a 5-6-year cross-sectional catamnesis. RESULTS: With regard to shoulder joint stability, pain, general physical health, and mental health, the patients showed scores comparative to normative scores. Significant functional limitation was evidenced by low mean scores on the specific function scales (e.g., Disability of the Arm, Shoulder and Hand questionnaire score = 64.0, normative score = 86.6). There were high correlations among the joint-specific scales (up to 0.93) and moderate correlations between these and the generic and clinical scales. Factor analysis identified 3 different assessment domains. CONCLUSION: The patients' quality of life (QOL) was high and not affected by impairment in some specific functional abilities. Physical QOL, mental QOL, clinical assessment, condition-specific measures, and generic measures were identified as separate domains, all of which are required for a comprehensive and sophisticated assessment in practical clinical routine.     

Impaired health-related quality of life in inflammatory bowel diseases: psychosocial impact and coping styles in a national German sample

BACKGROUND: The purpose of this study is to give a detailed survey of the disease-specific and generic quality of life (HRQOL) of adult patients suffering from inflammatory bowel disease (IBD) in Germany. METHODS: 1322 patients suffering from IBD were examined in a cross-sectional study. A questionnaire assessing disease-specific and generic quality of life, coping, and hopelessness was sent to members of the German Crohn/Colitis association. RESULTS: Compared to the general population, the generic HRQOL in IBD patients is significantly reduced. Active coping has a negative influence on patients' generic physical HRQOL during an active phase (beta = -0.31), while this association is not present in the case of patients in remission (beta = -0.02, interaction: P = 0.0003). Depressive coping is strongly and negatively associated with assessment of the physical (beta = -0.39, P < 0.0001) and mental (beta = -0.66, P < 0.0001) HRQOL. Disease-specific burdens are mainly reported in the physical dimension. CONCLUSION: The pattern of psychosocial impact of disease in German IBD patients is largely congruent with the one observed in the USA and Canada, but shows some specific differences. The a priori unexpected finding that active coping was associated with poor HRQOL in active IBD status illustrates the importance of considering different determinants of HRQOL in terms of their mutual interaction.     

Comprehensive assessment of clinical outcome and quality of life after total elbow arthroplasty

OBJECTIVE: To assess quantitatively the outcome and to explore the physiometric and psychometric properties of clinical, generic, and condition-specific instruments after total elbow arthroplasty. METHODS: Seventy-nine patients were assessed in a 6-19-year cross-sectional catamnesis by means of 6 widely used questionnaires, clinical examinations, and radiographic examinations. RESULTS: With regard to pain, general physical health, and all the mental health dimensions of the Short Form 36 (SF-36), the patients showed scores comparable to normative values. Elbow joint stability and satisfaction were both good. Significant functional limitation was evidenced by the low mean scores of the SF-36 physical functioning measure (48.7, normative 69.9) and the Disabilities of the Arm, Shoulder and Hand questionnaire (DASH) function measure (51.1, normative 89.3). The SF-36 physical component summary and the DASH correlated highly (r = 0.76) and, in factor analysis, loaded on the factor "physical unspecific." The patient and clinical modified American Shoulder and Elbow Surgeons questionnaire (mASES) correlated with the Patient Related Elbow Evaluation form (r = 0.92 with the patient mASES) and loaded on "physical specific." The SF-36 mental component summary loaded on "mental quality of life." CONCLUSION: The patients' self-rated health, quality of life, and clinical outcome were good and were not affected by impairment in some specific functional abilities. A questionnaire set comprising the SF-36 and the patient and clinical mASES is proposed for the comprehensive and specific assessment of outcome after elbow arthroplasty.     

苏州市老年人生活质量的评估

目的 了解苏州市老年人群生活质量现状及其影响因素。方法 采用MOS SF—36量表的中文版对苏州市167名离退休人员进行生活质量测量，并分别与美国常模(包括年龄为65—74岁组和大于74岁组)以及居住在美国波士顿的老年华人在生活质量的8个领域进行对比研究，比较其差别以及存在差别的可能解释。结果 苏州市老年人生活质量的8个方面中，生理功能和活力方面显著高于美国常模以及波士顿的老年华人；在情感职能方面显著高于波士顿的老年华人，显著低于美国常模(65—74岁组)；在总体健康和精神健康方面显著低于美国常模(65—74岁组)；而在生理职能、疼痛和社会功能方面均与美国常控(65—74岁组)以及波士顿的老年华人无明显差异。苏州市老年人的生活质量与年龄、家人对自己的关心和对自己所患疾病治疗效果的评价呈显著相关。结论 从影响生活质量的因素出发制订老年卫生保健政策，从中国老年人的总体健康和精神健康这两个薄弱方面着手，可促进其生活质量的提高。     

Quality of life and work in patients with rheumatoid arthritis and ankylosing spondylitis of working age

OBJECTIVE: To investigate the relationship between work and quality of life (QOL) in patients with rheumatoid arthritis (RA) and ankylosing spondylitis (AS) aged 16-59. METHODS: 1056 patients with RA and 658 with AS were included in the study. Data were obtained by postal questionnaire, which included several generic and disease related QOL instruments. Separate dimensions and physical and mental summary scores from the SF-36 were compared. Stepwise multiple regression was performed to study the relationship between work and physical and mental health related QOL, including disease related factors, coping, and fatigue. RESULTS: Physical health related QOL was reported to be worse, and mental health related QOL better, in RA than in AS in people of working age. No differences between RA and AS were found in somatic pain, physical role functioning, social functioning, emotional role functioning, vitality, or general health perception; nor were there any significant differences in fatigue and behavioural coping styles. Work was positively associated with physical health related QOL in both groups and, after disease characteristics, was the most important determinant. No association was found with mental health related QOL. CONCLUSIONS: Although physical health related QOL was worse in patients with RA, the impact on several dimensions of health related QOL in patients with RA and AS of working age under rheumatological care was comparable. Patients with RA and AS experienced similar limitations in physical role functioning, including work. Work is an important independent external determinant of physical health related QOL, but not of mental health related QOL.     

Assessment of quality of life in Iranian asthmatic children, young adults and their caregivers

Interest in the impact of illness on day to day function is leading investigators to include both disease specific and generic health related quality of life (HR QOL) questionnaires in a broad range of clinical studies and to gain a full picture of the impact of asthma on the lives of children with this condition, it is necessary to make direct measurement of health related quality of life. In response to this need, we used the Juniper's pediatric asthma quality of life questionnaire (PAQLQ) and Juniper's Pediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ) that has been developed based on guidelines for construction of over a dozen validated disease specific quality of life instruments. The PAQLQ consists of 23 items that in children with asthma have been identified as troublesome in their daily lives and PACQLQ that contains 13 items in two domains of emotional and activities disturbances. The study design consisted of an 18 month single cohort study. Patients participating in the study were 113 children, 7-17 years of age, with a wide range of asthma severity and their caregivers. For each patient a PAQLQ and for each caregiver a PACQLQ was completed. One week before visit patients recorded morning peak flow rates, medication use and symptoms in a diary. After complete physical examination, for determining of asthma severity, spirometry was performed. The questionnaires after statically analysis showed good levels of both longitudinal and cross sectional correlations with the conventional asthma indices and with general quality of life. We found that consistently QOL in boys were more disturbed than females, a good relevancy between severity of asthma and QOL scores and more disturbances of QOL in caregivers of male asthmatic patients than caregivers of female asthmatic patients. We could not find any significant relevancy between FEV1 percentage of predicted and overall scores of QOL. Smaller airways, and higher airway resistance and more activity of males than females may explain why boys have more disturbed life style than females.     

Type 2 Diabetes and Short Form 36-items Health Survey

OBJECTIVES: This study explores the quality of life in patients with type 2 diabetes with the French Short Form 36-items Health Survey which involves eight health concepts: physical functioning, body pain, role limitations due to physical health problems, role limitations due to personal or emotional problems, general mental health, social functioning, energy and general health perceptions. MATERIAL AND METHODS: The French SF 36 was proposed to 282 diabetic patients, 70 years of age and under, randomly selected from the database of Social Security healthcare office in Lyon (total: 4 644 patients). 160 healthy controls, matched for age and sex, were enrolled. 12 questionaires were not analysed because of linguistic difficulties. RESULTS: The data show that quality of life is altered into T2D compared with the control population in all 8 dimensions of SF-36 items Health Survey. CONCLUSIONS: Quality of life is an interesting element to take into account for practitioners during management of diabetic patients, that could prove useful in order to obtain a better compliance of the patients.     

Impact of pregnancy on health related quality of life evaluated prospectively in pregnant women with rheumatic diseases by the SF-36 health survey

OBJECTIVE: To gain insight into patient experience of the disease course and health related quality of life during and after pregnancy in women with rheumatoid arthritis and ankylosing spondylitis. METHODS: 10 patients with rheumatoid arthritis, 10 patients with ankylosing spondylitis, and 29 age matched healthy pregnant controls were evaluated by the medical outcomes study short form 36 (SF-36) health survey once at each trimester and at 6, 12, and 24 weeks postpartum. A group of non-pregnant age matched female patients (40 rheumatoid arthritis, 16 ankylosing spondylitis) was studied for comparison. RESULTS: Impaired physical dimensions as well as increased bodily pain was observed in healthy women in late pregnancy. Patients with rheumatoid arthritis showed improved physical functioning scores in the second trimester and reduced pain in the third trimester. Among pregnant patients, those with ankylosing spondylitis suffered the greatest impairment of health related quality of life during pregnancy. In all patient groups the physical impairment in the third trimester was less pronounced than in healthy controls. Mental health scores remained stable even with persisting active disease during pregnancy, or with a postpartum flare. CONCLUSIONS: Pregnancy reduced physical functioning in healthy women and patients, but had no impact on mental and emotional health, even at times of disease aggravation. The pregnancy experience documented in our patients may be helpful when counselling patients contemplating pregnancy.     

Validation of the Medical Outcomes Study HIV Health Survey as a measure of quality of life in HIV-infected patients in Singapore

Measurement of quality of life is crucial to assess the full impact of antiretroviral therapy on patient morbidity. No quality of life instruments have been validated in an Asian HIV-infected patient population, but it is important to do so given the increasing involvement of the region in clinical trials. We set out to validate the Medical Outcomes Study HIV Health Survey (MOS-HIV) in HIV infected patients in Singapore. Clinically stable outpatients were asked to complete the 30-item MOS-HIV (English or Chinese translation). Patients were also asked about the frequency of selected disease symptoms, and clinical and demographic data were recorded from the case sheet. 163 patients (90% Chinese, 96% male, mean age 38 years, mean CD4 count 159 cells/mm(3)) participated in the study and completed the questionnaire to a satisfactory standard. The questionnaire showed good internal consistency (Cronbach's alpha >0.7 in all cases). There were significant differences in quality of life scores between Centers for Disease Control disease stages, and significant correlations with CD4 count and symptom score, confirming the discriminant validity of the MOS-HIV. Factor analysis revealed two components corresponding to physical and mental health which were similar to those of studies in Western countries except that pain was more closely related to mental than physical health. Linear regression analysis identified symptom burden as the major predictor of physical and mental health. We concluded that the MOS-HIV is a valid measure of quality of life in this HIV patient population in Singapore, and is therefore likely to be useful in future clinical trials in the region. In the era of chronic HIV disease, close attention to symptoms (disease or drug-related) is warranted due to their major adverse influence on mental and physical aspects of quality of life.     

Haemophilic; Arthropathy: Assessment of Quality of Life After Total Knee Arthroplasty

The goal of this study was to examine how the known effects of total knee arthroplasty (TKA) on clinical outcome parameters translate into improved quality of life, as measured with validated condition-specific and generic questionnaires (Knee Society Score, WOMAC, SF-12, transition questions), addressing physical, mental and social health. Eleven patients (13 knees) undergoing TKA from 1986 to 1994, with the diagnosis of severe haemophilic arthropathy of the knee, were followed-up over a 4-year period on average. TKA was found to reduce the burden of disease to levels similar to patients with osteoarthritis undergoing hip arthroplasty. Clinical and functional improvement after TKA translated into a substantial and significant increase in quality of life and patient satisfaction, found in objective as well as in patient-perceived measures. However, the physical functional ability did not reach the same level as in the corresponding population not affected by haemophilia, due to residual symptoms and impairment of other joints. Received: 30 September 1998 / Accepted: 17 March 1999     

Health-related quality of life in Iranian patients with type 2 diabetes: An updated meta-analysis

Diabetes is the most common metabolic causes of increased mortality rate due to its multiple complications. Diabetes, thus, influences patients’ quality of life because of its resultant physical disabilities and mental health problems. This study aimed to investigate health-related quality of life among Iranian patients with type 2 diabetes. In this meta-analysis study, a search was conducted using the keywords: Quality of Life, Health-Related Quality of Life, QoL, HRQoL, Shortform questionnaire 36, SF-36, Diabetes and Iran in the national and international databases such as SID, MagIran, ISI/Web of Science, PubMed [including Medline], and Scopus between 2011 and 2018. Based on the heterogeneity of data, the random effects model was used. Data was analyzed using the Stata software version 14. Overall, 17 studies were eligible, with a total sample size of 5472 patients, and they showed that the mean score of the physical dimension in patients with type 2 diabetes (53.5, 95% CI: 43.1–63.9) was less than the mean of mental dimension score (54.5, 95% CI: 47–61.9). By increasing age of the samples, the mean of the HRQoL score of the Iranian patients with type 2 diabetes was significantly decreased (p = 0.015). The highest and lowest scores for the quality of life subscales were social function and general health, respectively. In conclusion, patients with type 2 diabetes have been shown to have moderate quality of life. Providing solutions to improve the quality of life in this group of patients, especially in the physical aspect, is required.     

Health-related auality of life (HRQL) in patients receiving home mechanical ventilation

Evaluation of health-related quality of life (HRQL) has become steadily more essential during the last two decades in research and health care practice in order to evaluate the human and financial costs and benefits of modern medical techniques. HRQL in its definition is based on different components of health including physical state, psychological well-being, social relations and functional capacities that are influenced by a persons experience, beliefs, expectations, and perceptions. For the purpose of assessment of HRQL several instruments have been developed. Generic instruments are not specific to any particular disease and are therefore most commonly used for general survey research on health allowing comparisons between disease states. In contrast, disease-specific questionnaires which are necessary in order to focus on domains most relevant to a particular disease are thought to be more sensitive than generic instruments following therapeutic interventions. Home mechanical ventilation (HMV) delivered noninvasively by a facial mask is a well established treatment for chronic hypercapnic respiratory failure. It is widely accepted that survival improves following institution of HMV in most patients with chest wall deformities or neuromuscular diseases while this is still controversially discussed in patients with COPD. However, patients receiving HMV usually have severe respiratory insufficiency with a past medical history of several years or decades, and suffer from end stage disease with objectively severe limitations of daily living. In addition, HMV is a time consuming and cost intensive therapy. Therefore, several studies have been conducted in the last decade to evaluate HRQL in patients receiving HMV. Recent studies using generic questionnaires have shown impairments in HRQL in patients receiving HMV compared to normals. This was primarily attributed to severe limitations in physical health, but not in mental health indicating that if severe physical limitation occurs in advanced respiratory disease this will not necessarily lead to mental limitation. In addition, limitations in HRQL in patients with HMV were not substantially higher than in patients with different chronic disease being not dependent on HMV. Improvements in HRQL following the institution of HMV were only mild or even insignificant in patients with COPD, but patients with restrictive ventilatory disorders are suspected to have more benefits. However, well validated disease-specific questionnaires which are designed to be more sensitive in the assessment of changes in HRQL than generic instruments have been introduced recently for patients with severe respiratory failure, but the influence of HMV to HRQL remains still unclear, since prospective studies using these questionnaires have yet not been finished.     

Relationship between psychological profile and cardiological variables in chronic heart failure. The role of patient subjectivity.

AIM: To analyse the relationships between the psychological profile, the satisfaction profile and cardiological variables in patients with chronic heart failure. MATERIAL AND METHODS: One hundred and fifty-two male patients with chronic heart failure in a stable clinical condition underwent cardiological evaluation and psychological assessment by means of two instruments: the Cognitive Behavioural Assessment 2.0 Battery and the Satisfaction Profile. RESULTS: Patients scored higher than healthy subjects in terms of psychophysiological disorders and depression. Patients in NYHA class III reported higher anxiety and depression scores and had more frequent problems in daily life than patients in NYHA classes I and II. Class III patients also reported lower satisfaction levels in many aspects of psychological and physical functioning. Pulmonary resistances >2.5 Wood units, pulmonary capillary wedge pressure >0. 18 mmHg and a diagnosis of ischaemic cardiomyopathy were associated with low satisfaction levels in the Satisfaction Profile 'physical functioning' factor. To be listed for heart transplantation and a history of more than three hospitalizations were related to low satisfaction levels in many items of the Satisfaction Profile. Finally, stepwise multiple regression showed that NYHA class, depression score and pulmonary capillary resistance accounted for 32% of the variance in the Satisfaction Profile physical functioning factor score. CONCLUSION: On the basis of chronic heart failure diagnosis only, a generic pattern of psychological distress can be predicted, common to many severe chronic diseases. Shifting from objective mental health measures towards the domain of subjective satisfaction, the only link which emerges is between objective cardiological data and satisfaction with physical functioning. Satisfaction in terms of other life aspects does not seem to be related to cardiological variables.These results support the importance of subjectivity in health related quality of life, as well as objective measures.     

Quality of life in morbid obesity.

INTRODUCTION: Morbid obesity (MO) is a chronic disease that is reaching epidemic proportions and becoming an increasing health problem in developed countries. Obesity-related comorbidities reduce both the quality and expectancy of life. OBJECTIVES: To validate the GIQLI (Gastrointestinal Quality of Life Index) test as a reliable and effective tool for the evaluation of quality of life in morbidly obese patients. PATIENTS AND METHODS: The GIQLI test is made up of 36 individually scored items, the addition of which give up a final score. A higher score correlates with a better quality of life. Items can be separated into five groups or dimensions: digestive symptoms, emotional status, effects of treatment, and physical as well as social dysfunction. The GIQLI test was administered to a randomized sample of 1990 morbidly obese patients who fulfilled the indication criteria for bariatric surgery, and to a control group of 100 healthy individuals with no known medical, functional or psychiatric disease. Overall test and specific dimension scores were evaluated for each group. RESULTS: Overall test and specific dimension scores were significantly lower in patients with MO when compared to the control group. The overall GIQLI score decreased as age increased, as did the number of associated comorbidities. CONCLUSIONS: The GIQLI test proved to be a rather useful tool to evaluate quality of life in morbidly obese patients. These patients present a poorer quality of life not only because of the presence of digestive symptoms but also because of their emotional, physical, and social status.     

Preoperative and Postoperative Quality of Life in Patients with Familial Adenomatous Polyposis

Purpose  This study was designed to prospectively examine functional outcome, quality of life, and patients’ personal experiences and adjustment to functional changes during the first year after prophylactic surgery. Methods  Twenty-one consecutive patients with familial adenomatous polyposis were examined before proctocolectomy (T0), on ileostomy reversal (T1), and 6 (T2) and 12 months (T3) after surgery by means of standardized questionnaires and interviews. Results  Average physical and mental health declined profoundly after proctocolectomy, followed by a steady improvement after 6 and 12 months. The majority of patients reported the ileostomy period as particularly distressing. After one year, 75 percent of patients reported complete recovery in terms of physical, emotional, and social functioning, whereas one-quarter of patients did not regain their former level of functioning. Despite substantial improvement in pouch functions, functional impairment persists because of frequent bowel movements, resulting mainly in restricted social activities. Ten percent of patients reported impaired sex life, irrespective of gender. Conclusions  The majority of patients with familial adenomatous polyposis were found to adjust favorably to functional impairment while maintaining satisfactory quality of life. Complementing standardized quality of life measures by patients’ personal experiences may help to identify vulnerable patients in need of psychosocial support. Presented at the Consortium for Psychooncology, Cologne, Germany, December 1 to 2, 2005, and at the German Cancer Congress, Berlin, Germany, March 22 to 26, 2006.     

Impaired health-related quality of life in Romanian patients with chronic viral hepatitis before antiviral therapy

BACKGROUND AND AIM: Chronic hepatitis is a disabling condition leading to impairment of a patient's quality of life. We investigated the impact of chronic viral hepatitis on health-related quality of life. The relationship between transaminase level and score in the quality-of-life questionnaire was also investigated. METHODS: We studied 66 patients with chronic viral hepatitis (27 with hepatitis B, 38 with hepatitis C, 1 with hepatitis B+C; 32 men, 34 women) naive to any previous antiviral therapy. All had high levels of transaminases. Patients with chronic disease or those using drugs to modify their quality of life were discarded. The control group consisted of 36 healthy volunteers (17 men, 19 women). Both groups completed the Short Form 36 health survey, with the exception of the items concerning bodily pain. RESULTS: Significant differences between the two groups for every domain of quality of life (physical functioning, role physical, mental health, role emotional, social functioning, vitality and general health) were recorded. We found no significant correlation between the level of transaminases and any item of the health-related quality-of-life questionnaire. In hepatitis B patients, several quality-of-life scores (general health, social functioning, mental health) were better than in hepatitis C patients. CONCLUSIONS: Patients with chronic viral hepatitis not receiving antiviral therapy have an impaired quality of life as estimated by the Short Form 36 health survey.     

Methodological considerations for evaluating quality of life

This paper reviews the methods and principles for quality of life assessment. The aging of the population and the improved survival of people with acute and chronic conditions have produced several levels of disability requiring long-term treatment and rehabilitation. In 1948 the World Health Organization defined health as not merely the absence of disease but rather a state of complete physical, mental, and social well being. This term evolved from its conceptual definition to the development of scales to measure the quality of life beyond physical status. Thus, quality of life assessment includes areas such as mental health, social support, and life satisfaction. It is recognized that the expectations, vitality, pain, disability, and personal experiences influence the perception of a person's general health. A composite measurement aimed to quantify health according to physical, mental, and social well being simultaneously would likely include people at clearly different points on the three different continua, but in the midranges of the composite. The multidimensionality problems and the level of subjectivity involved in the assessment of the quality of life require valid and reliable instruments. This paper present an inventory of 126 questionnaires aimed to measure the quality of life for several diseases and populations. A better understanding of the methods to assess the quality of life will allow the incorporation of these instruments in the comprehensive assessment of patients, into clinical trials, and for health services research.