The impact of psychological functioning upon systemic sclerosis patients' quality of life

OBJECTIVE: To access health-related quality of life (HRQOL) in systemic sclerosis (SSc) patients using the World Health Organization Quality of Life Instrument, Short-Form (WHOQOL-BREF), and to identify the association between clinical, psychopathological, and personality parameters and SSc patients' HRQOL. METHODS: Fifty-six patients with SSc were compared with 72 patients with rheumatoid arthritis (RA), 43 with systemic lupus erythematosus (SLE), 34 with Sj?gren syndrome (SS), and 74 healthy controls. A wide range of clinical information was collected and the following self-report instruments were used: the WHOQOL-BREF, the General Health Questionnaire, the Symptom Distress Check List, the Hostility and Direction of Hostility Questionnaire, the Defense Style Questionnaire, and the Sense of Coherence scale. RESULTS: HRQOL perceived by SSc patients was significantly impaired compared with healthy controls. Initial examination of HRQOL across groups of rheumatology patients revealed similar HRQOL, but when age, pain, psychopathology, and coping strategies were taken into account, SSc patients had impaired physical health QOL in comparison with RA, SLE, and SS patients. Arthritis-related pain was closely associated with SSc patients' HRQOL. Elevated psychological distress symptoms as well as certain personality traits, such as maladaptive defenses and lower sense of coherence, were also associated with diminished HRQOL. CONCLUSIONS: Impaired psychological functioning is associated with diminished HRQOL in SSc, and consequently, treatment of depressive symptoms should be considered a priority. Moreover, assessment of HRQOL should only be used in conjunction with specific psychological distress measurements, to detect the influence of psychopathology on HRQOL.     

Lung cancer and quality of life

Quality of life (QOL) is frequently used as an endpoint of measurement in cancer treatment. Compared to other cancers, there are only a few reports of QOL in the treatment of lung cancer. Several QOL instruments have been developed and this paper reports experience with the functional Living-Index-Cancer and Quality of Life Index tools in Lung Cancer treatment, in a randomised controlled trial of chemotherapy.     

Individualised Versus Standardised Assessment of Quality of Life in Eating Disorders

Individualised measures of quality of life (QoL) refer to instruments that encourage the respondent to actively elicit which areas of their life are most relevant for his/her QoL. The aim of this study is to compare individualised versus standard measures of QoL in a sample of patients with eating disorder (ED). The Schedule for the Evaluation of the Individual Quality of Life (SEIQoL) and a generic measure of QoL [World Health Organization Brief Quality of Life Assessment Scale (WHOQOL‐BREF)] were applied on two occasions (one‐year follow‐up) to a sample of 165 patients with ED, 57 recovered patients with ED, and 349 women from the general population. The areas of ‘family’, ‘education/career or job’, ‘friends’, ‘leisure’, ‘romantic partner’ and ‘health’ were identified as the most important for their QoL for all groups, both times. The WHOQOL‐BREF was more sensitive than the SEIQoL in detecting changes that occurred over time. Clinical interventions for ED should consider social components as objectives of intervention. Copyright © 2015 John Wiley & Sons, Ltd and Eating Disorders Association.     

Review of quality of life instruments used in end-stage renal disease

Health related quality of life (HRQOL) indicators take into account the personal perception of health, and are proposed as an alternative for efficacy indicators in medical and therapeutic decision making. They provide, due to elaboration and validation of a questionnaire, a standardised assessment of the health status perception. This paper provides a review of a variety of HRQOL instruments developed for patients suffering end-stage renal disease (ESRD). Generic instruments are designed to be applicable in general population and disease-targeted instrument are potentially more sensitive to the characteristics of a specific population. Among HRQOL instruments, we found 4 generic questionnaires (the Sickness Impact Profile, the SF 36, the Nottingham Health Profile and the EQ-5D), 3 disease-targeted questionnaires developed for ESRD patient undergoing dialysis (the Kidney Disease Quality of Life instrument, the Kidney Disease Questionnaire and the Choice Health Experience Questionnaire), 1 questionnaire specific for ESRD patients (the HRQOL questionnaire), and 2 specific disease-targeted instruments for renal transplant (the Kidney Transplant Questionnaire and the ESRD Symptom Checklist-Transplantation Module). In France, very few studies on the quality of life of ESRD patients were published; no specific questionnaire validated in French is yet published.     

穴位贴敷联合降压药物改善老年高血压病患者生活质量的临床观察

目的观察穴位贴敷联合降压药物改善高血压病患者生活质量的临床疗效。方法将61例老年病科住院患者随机分为两组。对照组采用常规剂量的左旋氨氯地平片进行治疗,治疗组采用常规降压药物联合穴位贴敷治疗。随访4周,随访结束时测定世界卫生组织生活质量量表(WHOQOL)以及杜氏高血压生活质量量表评分,评价高血压病患者的躯体功能、心理功能以及社会功能等方面,从而全面评估两组患者生活质量的改善情况。对治疗效果进行统计学处理。结果两组患者治疗后WHOQOL以及杜氏高血压生活质量量表评分改善水平较治疗前有统计学意义,且治疗组优于对照组(P<0.05)。结论穴位贴敷联合降压药物治疗高血压病有较好的疗效,同时也可以明显改善患者生活质量。     

Improvement and longterm maintenance of quality of life during treatment with adalimumab in severe rheumatoid arthritis

OBJECTIVE: In patients with longstanding severe rheumatoid arthritis (RA) receiving chronic treatment with adalimumab, health related quality of life (HRQOL) was assessed using new instruments [Functional Assessment of Chronic Illness Therapy-Fatigue scale (FACIT-Fatigue) and Health Utilities Index Mark 3 (HUI3)] and a more conventional instrument [Medical Outcomes Study Short Form-36 Health Survey (SF-36)].METHODS: Different measures for collecting patient-reported outcomes were applied simultaneously during the 3-year study period. Sociodemographic and medical history data were assessed at the baseline visit. Clinical examinations (e.g., joint examination and morning stiffness), disease assessments, and HRQOL data were recorded every 8 weeks. For dichotomous and categorical variables, absolute and relative frequencies were calculated. Metric measures were described using mean and standard deviation and/or standard error of the mean. HRQOL data were analyzed using observed cases. RESULTS: All assessed measures (FACIT-Fatigue, HUI3, SF-36) showed a rapid and statistically significant improvement from baseline following initiation of adalimumab therapy. This effect was maintained over the study period for a mean of 1.6 years in all applied measures. HRQOL data from all tested instruments were significantly correlated with each other. CONCLUSION: Chronic therapy with adalimumab improved measures of fatigue and HRQOL in patients with longstanding RA.     

Development of a disease-specific quality of life questionnaire for patients with aplastic anemia and/or paroxysmal nocturnal hemoglobinuria (QLQ-AA/PNH)—report on phases I and II

Acquired aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) are interrelated ultra-rare diseases. Quality of life (QoL) evaluation tools used in studies for AA and PNH are unspecific and designed for cancer patients (e.g., the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, EORTC QLQ-C30). Given the complexity of AA and PNH, variation in symptoms and treatments, younger age of many patients, and the fact that AA and PNH are not classified as malignant diseases, it is likely that cancer-specific questionnaires are inappropriate. We generate an AA/PNH-specific QoL questionnaire (QLQ-AA/PNH), performed according to EORTC guidelines. QoL issues were obtained from the literature and interviews with patients and physicians (phase I), then ranked by patients and physicians. In phase II, items were created. Patients in more than 25 German and Swiss cities were interviewed face to face. In phase I, interviews of 19 patients and 8 physicians specialized in AA/PNH treatment resulted in 649 QoL issues; these were condensed to 175 and graded according to their importance by 30 patients and 14 physicians (phase II). Five physicians took part in phases I and II. Altogether, 97 issues were rated important. Twelve EORTC QLQ-C30 items were not rated important, while several new QoL aspects were brought up. Modifications in wording and phrasing led to two questionnaires with 77 items regarding general QoL aspects and 20 items regarding medical care. Important QoL aspects of PNH/AA patients are inappropriately captured with available QoL tools. Developing a new QoL questionnaire specific for this patient group is warranted.     

Concepts important to patients with psoriatic arthritis are not adequately covered by standard measures of functioning

OBJECTIVE: To explore whether the concepts important to patients with psoriatic arthritis (PsA) are covered by self-report instruments assessing functioning. METHODS: We conducted a qualitative focus group study with PsA patients about their problems in daily functioning. Focus groups were tape recorded and transcribed verbatim. The transcribed texts were divided into meaning units, and concepts contained in these meaning units were extracted. Self-report instruments assessing functioning in PsA were identified in a structured literature search. Using the International Classification of Functioning, Disability and Health (ICF) as a common frame of reference, we determined whether each concept identified in the focus groups was covered by each of the instruments. RESULTS: Thirty-one patients participated in 6 focus groups. The following 9 instruments were included in the present analysis: Arthritis Impact Measurement Scale Short Form; Bath Ankylosing Spondylitis Disease Activity Index; Disabilities of the Arm, Shoulder, and Hand Questionnaire; Dermatology Quality of Life Index; Dougados Functional Index; Health Assessment Questionnaire (HAQ); HAQ-S (HAQ adapted for spondylarthropathies); PsA-specific Quality of Life Instrument; and Short Form 36 Health Survey. Of the 54 concepts identified in 590 meaning units in the transcribed data, 19 concepts (35%) were not covered by any of the instruments. Of these, 11 concepts that were linked to the ICF component environmental factors were not covered by any of the instruments, whereas all concepts linked to the ICF component activities and participation were covered by at least 1 of the instruments (but no single instrument covered all concepts). CONCLUSION: The impact of environmental factors, attitudes towards individuals with health problems, and loss of leisure time may represent important aspects addressing participation that are currently not covered in the instruments assessing functioning in PsA.     

Functional assessment measures in rheumatologic disorders

Rheumatologic disorders cause functional impairment and significantly affect health-related quality of life. Functional assessment and health-related quality of life scales are increasingly being used as outcome measures to assess the influence of the diseases and health outcome in clinical studies of patients with rheumatologic diseases. In this article, we review the functional assessment and health-related quality of life measures which have been commonly used as outcome measures in rheumatologic disorders. These measures are Short form-36(SF-36), SF-12, Nottingham Health Profile, Sickness Impact Profile, Euro Qol, SF-6D, Health Utilities Index mark 2 and 3, Stanford Health Assessment Questionnaire, Rheumatoid Arthritis Quality of Life Questionnaire, Arthritis Impact Measurement Scales, Mc Master Toronto Arthritis Patient Preference Disability Questionnaire, Western Ontario and Mc Master Universities Osteoarthritis Index, Lequesne Index, Knee Disability and Osteoarthritis Outcome Score, Knee Disability and Osteoarthritis Outcome Score-Physical Function Shortform, Hip Disability and Osteoarthritis Outcome Score, Hip Disability and Osteoarthritis Outcome Score-Physical Function SF, Fibromyalgia Impact Questionnaire, Psoriatic Arthritis Quality of Life Scale, Gout Assessment Questionnaires, Dougados Functional Index, Bath Ankylosing Spondylitis Functional Index, and Ankylosing Spondylitis Quality of Life Scale.     

Health Related Quality of Life in Patients with Cirrhosis

HRQOL is a multidimensional concept that usually includes self-report of the way in which physical, emotional, social, or other domains of well-being are affected by a disease or its treatment. The concept of HRQOL is a direct descendent of the World Health Organization definition of health in that HRQOL is thought to encompass multiple domains: (1) biological functioning, (2) psychological functioning, and (3) social functioning. Cirrhosis of the liver has a considerable negative impact on HRQOL. This paper describes the instruments that can be used to measure HRQOL in patients with cirrhosis, factors associated with poor HRQOL, and interventions that may result in improvement in HRQOL for patients with cirrhosis.     

Evaluating quality of life in hip and knee replacement: Psychometric properties of the World Health Organization Quality of Life short version instrument

OBJECTIVE: To evaluate the psychometric properties of the World Health Organization Quality of Life short version instrument (WHOQOL-BREF), and to determine its responsiveness in assessing early outcome after total hip or knee replacement surgery. METHODS: At baseline (entry to an orthopedic waiting list), 279 participants completed the WHOQOL-BREF instrument, Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC), Assessment of Quality of Life (AQOL) instrument, Kessler Psychological Distress (K10) scale, and the modified Health Assessment Questionnaire (MHAQ). A total of 74 patients completed reassessments 3 months after surgery. RESULTS: The WHOQOL-BREF demonstrated acceptable internal consistency for all domains (Cronbach's alpha = 0.76-0.84) and moderate concurrent validity for the physical and psychological domains (r = 0.67 for physical versus AQOL; r = -0.71 for psychological versus K10). Minimal ceiling or floor effects were identified at baseline or 3 months, except for the social relationships domain. The disease-specific WOMAC subscales were most responsive to change (relative efficiency [RE] 0.66-1.00). Apart from social relationships, all WHOQOL-BREF scores improved significantly after surgery. The physical domain was more responsive than the AQOL (RE 0.50 versus 0.42) and was similar to the MHAQ (RE 0.55 for MHAQ). The responsiveness of the psychological domain was similar to that of the K10 scale (RE 0.11 versus 0.08). CONCLUSION: The WHOQOL-BREF has good psychometric properties for use in persons with severe joint disease, and by providing complementary information, it offers clinicians and researchers an additional tool for comprehensively assessing quality of life in this patient group.     

Quality of life in elderly patients with acute myeloid leukemia: patients may be more accurate than physicians

Background

The aim of this study was to evaluate changes in quality of life scores and their association with therapy and survival in unselected elderly patients with acute myeloid leukemia.

Design and Methods

From February 2003 to February 2007, 113 patients aged more than 60 years with de novo acute myeloid leukemia were enrolled in a prospective observational study. Two different quality of life instruments were employed: the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire – C30 (EORTC QLQ-C30) and a health-related quality of life questionnaire for patients with hematologic diseases (QOL-E).

Results

Forty-eight patients (42.4%) received intensive chemotherapy and 65 (57.6%) were given palliative treatments. Age greater than 70 years (P=0.007) and concomitant diseases (P=0.019) had a significant impact on treatment allocation. At diagnosis, general quality of life was affected [median QOL-E standardized score 54, interquartile range 46–70; median EORTC global score 50, interquartile range 41–66]. Most patients were given a good ECOG Performance Status (< 2), which did not correlate with the patients’ perception of quality of life. At multivariate analysis, palliative approaches (P=0.016), age more than 70 years (P=0.013) and concomitant diseases (P=0.035) each had an independent negative impact on survival. In a multivariate model corrected for age, concomitant diseases and treatment option, survival was independently predicted by QOL-E functional (P=0.002) and EORTC QLQ-C30 physical function (P=0.030) scores.

Conclusions

Quality of life could have an important role in elderly acute myeloid leukemia patients at diagnosis as a prognostic factor for survival and a potential factor for treatment decisions.     

Validity and reliability of the Italian version of the Chronic Liver Disease Questionnaire (CLDQ-I) for the assessment of health-related quality of life

BACKGROUND: The Chronic Liver Disease Questionnaire is a specific health-related quality of life assessment designed for patients with liver diseases. AIM: The aim of this paper is to report on the validity, reliability and sensitivity to change of the Italian version (Chronic Liver Disease Questionnaire-I) in subjects with HCV infection. SUBJECTS: The Chronic Liver Disease Questionnaire-I was administered to 350 subjects with HCV infection together with the World Health Organization Quality of Life Assessment, abbreviated version, a generic quality of life assessment. METHODS: The instrument was translated from English, backtranslated and reviewed in focus groups in the framework of a large multicentre study. Exploratory factor analysis identified five factors accounting for 65% of the variance of Chronic Liver Disease Questionnaire-I items and only partially overlapping with those found in the original version. RESULTS: The Chronic Liver Disease Questionnaire-I proved to discriminate between subjects with and without comorbid diseases at baseline (t-test = 3.59, p < 0.001). Test-retest reliability was moderate (ICC = 0.60). The Chronic Liver Disease Questionnaire-I was sensitive to change in patients who deteriorated after one month of treatment. Change in the overall Chronic Liver Disease Questionnaire-I score in deteriorated patients was correlated with changes in World Health Organization Quality of Life Assessment, abbreviated version scores in the physical, psychological and environment, but not in the social area. CONCLUSIONS: The Italian version of Chronic Liver Disease Questionnaire is a valid and reliable instrument to be used in cross-sectional and longitudinal studies.     

EORTC QLQ-C30 assessment in Turkish patients with hematological malignancies

We aimed to evaluate the prevalences of self-reported anxiety and depression symptoms in hematological malignancy patients and to determine the association between the presence of these disorders and the results of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-30 (EORTC QLQ-C30). One hundred and forty patients with a diagnosis of a hematological malignancy completed the Hospital Anxiety and Depression Scale (HADS) and the General Health Questionnaire. Patients with higher anxiety scores were more frequently inpatients, had higher EORTC general symptom scores, and they had lower cognitive, emotional, social functioning and global quality of life (QoL) scores (all p values <0.05). Patients with higher depression scores had more frequently active disease and were inpatients; they had higher mean Eastern Cooperative Oncology Group performance scores, EORTC gastrointestinal system and general symptom scores, and significantly lower physical, role, emotional, social and cognitive functioning and global QoL scores (all p values <0.01). During follow-up, it was observed that survival curves of patients with active disease who had higher HADS depression scores tended to be shorter than those with lower scores (p = 0.1). Anxiety and depression are frequent in hematological malignancy patients and associated with poor QoL and performance status. In addition, the presence of self-reported depression might have a predictive value for poor prognosis.     

Health-related quality of life in patients undergoing cholecystectomy

This large-scale prospective cohort study of a Taiwan population applied generalized estimating equations to evaluate predictors of health-related quality of life (HRQOL) after open cholecystectomy (OC) and laparoscopic cholecystectomy (LC) procedures performed between February 2007 and November 2008. The Gastrointestinal Quality of Life Index and Short Form-36 were used in a preoperative assessment and in 3(rd) month and 6(th) month postoperative assessments of 38 OC and 259 LC patients. The HRQOL of the cholecystectomy patients were significantly improved at 3 months and 6 months postsurgery (p<0.05). At 3 months postsurgery, HRQOL improvement was significantly larger in LC patients than in OC patients. Patient characteristics, clinical characteristics, and health care quality were also significantly related to HRQOL improvement (p<0.05). Additionally, after controlling for related variables, preoperative health status was significantly and positively associated with each subscale of the Gastrointestinal Quality of Life Index and Short Form-36 throughout the 6 months (p<0.05). Patients should be advised that their postoperative HRQOL may depend not only on their postoperative health care but also on their preoperative functional status.     

Health of children with chronic arthritis: relationship of different measures and the quality of parent proxy reporting

OBJECTIVE: To examine the strength of the association between different measures of health-related quality of life (HRQOL), disability, pain, and well-being in children with chronic arthritis. To evaluate whether HRQOL scores vary as a function of disability status beyond chance. To assess the quality of the parent proxy report for HRQOL as compared with disability, pain, and well-being. METHODS: Measures of HRQOL (visual analog scale [VAS] of health, Pediatric Quality of Life Inventory [PedsQL], Juvenile Arthritis Quality of Life Questionnaire (JAQQ), and modified standard gamble technique [SG]), disability (Childhood Health Assessment Questionnaire), VAS of pain, and VAS of well-being (VAS-well) were completed by the parents (n = 119) and patients > or =8 years (SG: > or =12 years). RESULTS: HRQOL was highest when measured by the SG, whose utilities were no more than weakly correlated with any of the other outcomes. The values of all other HRQOL measures were at least moderately correlated with each other and with the VAS-well. Irrespective of the measure used, disability was associated with significantly decreased HRQOL. There was fair to good agreement and moderate consistency of the HRQOL ratings (SG: fair consistency) between patients and parents with marked differences between health domains. CONCLUSION: HRQOL measured by the PedsQL, JAQQ, and VAS are moderately to highly correlated with each other in children with chronic arthritis. The children's HRQOL significantly decreases with increasing disability. Despite more pronounced differences for some health domains, parents are moderate to good proxy reporters of HRQOL, disability, and well-being of children with chronic arthritis.     

Measuring disability and quality of life in established rheumatoid arthritis

Rheumatoid arthritis is a chronic inflammatory disease with a major impact on physical and psychological health. It can cause severe disability and reduce health-related quality of life, aspects that are important to patients. Thus, it is important to measure disability and health-related quality of life in clinical practice and in clinical trials. This article presents an overview of the most important measures of outcome concerning disability and health-related quality of life, including different forms of the Health Assessment Questionnaire (HAQ, MHAQ, MDHAQ, HAQ II), visual analogue scales for fatigue and function, SF-36, Arthritis Impact Measurement Scales (AIMS/AIMS2), the Rheumatoid Arthritis Quality of Life (RAQoL) questionnaire, Nottingham Health Profile, Sickness Impact Profile and the utility instruments 15D, EQ-5D, SF-6D and Health Utilities Index (HUI) 2 and 3.     

Effects of a food preparation program on dietary well-being for stroke patients with dysphagia: A pilot study

Background:Dysphagia is one of the common issues observed in patients with stroke. Stroke patients with dysphagia have to eat blended food or similar types of food for each meal, resulting in dietary dissatisfaction. The purpose of this study was to investigate the effects of a food preparation program on dietary well-being for stroke patients with dysphagia.Methods:This study was a pilot randomized clinical trial. Twenty-two patients were assigned randomly into the food preparation group (n = 11) and control group (n = 11). The food preparation group received oral motor exercises, recognition of food texture and thickener, and hands-on food preparation for 6 weeks. Outcome measures included the Dietary Well-Being Scale, brief version of the World Health Organization Quality of life, Swallowing Quality of Life Questionnaire, and Mini Nutritional Assessment.Results:Patients in the food preparation group showed significant improvements in the Dietary Well-Being Scale, psychological and environmental domains of the brief version of the World Health Organization Quality of life (P = .001–.024) with small to large effect sizes (success rate difference = 0.23–0.46). The Swallowing Quality of Life Questionnaire and Mini Nutritional Assessment displayed non-significant differences (P = .053–.092) and revealed small to moderate effect sizes (success rate difference = 0.23–0.32).Conclusions:The food preparation program showed a positive impact on dietary well-being and a potential improvement in the health-related quality of life, quality of life related to the process of swallowing, and nutritional status for stroke patients with dysphagia. We recommend that stroke patients with dysphagia receive adequate knowledge and hands-on food preparation training to increase their dietary intake and well-being.     

Adalimumab improves joint-related and skin-related functional impairment in patients with psoriatic arthritis: patient-reported outcomes of the Adalimumab Effectiveness in Psoriatic Arthritis Trial

OBJECTIVE: To evaluate the effects of adalimumab on patient-reported outcomes of joint-related and skin-related functional impairment, health-related quality of life, fatigue and pain in patients with psoriatic arthritis (PsA). METHODS: Patients with moderately- to severely- active PsA were treated with adalimumab, 40 mg, every other week, or placebo, in this 24-week, randomised, controlled trial. Patient-reported outcomes included the Health Assessment Questionnaire Disability Index (HAQ DI), Short-Form 36 Health Survey (SF-36), the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue) Scale and the Dermatology Life Quality Index (DLQI). RESULTS: Adalimumab (n = 151) and placebo (n = 162) groups were comparable with respect to baseline demographics and disease severity. Significant changes from baseline in HAQ DI were reported for adalimumab v placebo (-0.4 v -0.1, p<0.001) at both 12 and 24 weeks. At week 24, significant improvements in the SF-36 domains of physical functioning, role-physical, bodily pain, general health, vitality and social functioning, as well as the physical component summary score, were observed for adalimumab versus placebo (p<0.01). These reported changes in HAQ DI and SF-36 were also clinically important. Significantly more patients treated with adalimumab had complete resolution of functional loss (HAQ DI = 0) and dermatological-related functional limitations (DLQI = 0) compared with placebo at weeks 12 and 24 (p< or =0.001). Adalimumab led to significantly greater improvements in FACIT-Fatigue scores, pain scores, and disease activity measures versus placebo at 12 and 24 weeks (p<0.001 for all). CONCLUSIONS: Adalimumab improved physical-related and dermatological-related functional limitations, HRQOL, fatigue and pain in patients with PsA treated for 24 weeks.