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1.

Background

Few studies focus on cross-cultural differences in Chronic fatigue syndrome (CFS).

Purpose

This study aimed to (1) compare fatigue severity and impairment, somatic complaints, psychological distress, and quality of life (QoL) in a population of Portuguese and Dutch patients; (2) explore the differential contribution of behavioral and cognitive determinants of fatigue severity; and (3) investigate the relation between fatigue severity and somatic complaints on one hand and QoL on the other in both populations.

Method

Eighty-five female patients from Portugal (Mean age?=?47.54) and 167 female CFS patients from The Netherlands (Mean age?=?44.93) participated in the study. All participants were surveyed for demographic and clinical characteristics, fatigue severity, somatic symptoms, psychological distress, (physical and psychological) QoL, physical activity, behavior regulation patterns, and illness representations.

Results

Cross-cultural differences were found in relation to working status, duration of fatigue symptoms, psychological distress, somatic complaints, and psychological QoL. Although behavioral characteristics and illness representations were significantly associated with fatigue severity in both Portuguese and Dutch patients, there were important differences in the determinants of CFS. Moreover, higher levels of fatigue and severity of other somatic complaints were related to poor QoL.

Conclusions

These findings show cross-cultural similarities and differences in clinical characteristics and psychological determinants of CFS that are important in view of diagnosis and treatment.  相似文献   

2.

Background

Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men’s QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death.

Methods

This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants’ QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; <?6?months, 6–18?months and > 18?months before death.

Results

Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6?months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006.

Conclusion

The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.
  相似文献   

3.

Purpose

Fatigue is commonly experienced in end-stage kidney disease (ESKD) and is associated with poor outcomes. Currently, little research has examined the psychosocial correlates of fatigue severity and its impact on renal disease patients. We predicted that psychological factors (distress, cognitions and behaviours) would be associated with fatigue severity and impairment in ESKD patients even when controlling for clinical and disease factors.

Method

One hundred seventy-four haemodialysis patients completed the Chalder Fatigue Questionnaire (fatigue severity) and the Work and Social Adjustment Scale (fatigue-related impairment) in addition to measures evaluating distress, fatigue perceptions, symptom beliefs and behaviours. Demographic and clinical data were also collected.

Results

Fatigue severity was not related to haemoglobin levels, serum albumin or dialysis vintage. In hierarchical regression models, demographic and clinical factors explained 20 % of the variance in fatigue (ethnicity, body mass index, exercise, log C-reactive protein and multimorbidity). Psychological distress (beta?=?0.21, p?<?0.01), negative beliefs about fatigue (beta?=?0.10, p?=?0.01) and unhelpful behaviours (all-or-nothing behaviour [beta?=?0.28, p?<?0.01] and avoidance [beta?=?0.16, p?<?0.01]) explained an additional 36.4 % of the variance. Fatigue-related impairment was associated with psychological distress, perceptions that symptoms indicate damage, avoidance behaviour and the level of fatigue severity.

Conclusion

Patients’ mood, beliefs and behaviours are associated with fatigue in dialysis patients. Psychological interventions to alter these factors may reduce fatigue severity and fatigue-related disability in ESKD patients.
  相似文献   

4.

Purpose

To translate and cross-culturally adapt the Skindex-16, a brief skin-disease-specific QoL questionnaire, into Arabic for Egyptians and to evaluate its measurement properties in Egyptian patients with skin disease.

Method

Translation and cultural adaption were performed following guidelines for cross-cultural adaption of health-related quality of life measures. Subsequently, Skindex-16 was administered to 500 consecutive dermatological patients and 500 healthy persons for verification of its reliability and validity. Next, we examined the effect of skin disorders on QoL as well as influences of age, sex, socioeconomic level, education, and use of medication on skin disease-related QoL.

Results

The instrument showed high internal consistency reliability and good construct and content validity. The quality of life was most deteriorated in the emotional domain followed by symptoms domain (mean percentage score 55.5 ± 23.1 and 31.7 ± 26.8 respectively), while functioning was the least affected domain (mean percentage score 29.1 ± 26.8). Higher total Skindex-16 scores were observed for patients with psoriasis, urticaria, acne, and atopic dermatitis than those with vitiligo and alopecia areata. Educational level, social class, medication use, and family history influenced the impact of skin disease on overall QoL.

Conclusion

The adapted Egyptian Arabic version of Skindex-16 is valid and reliable; it showed that skin problems had a clinically significant impact on QoL in Egyptian patients.
  相似文献   

5.
Kopp  I.  Bauhofer  A.  Koller  M. 《Inflammation research》2004,53(2):S130-S135
Background and aims:Quality of life (QoL) is an important outcome measure in clinical studies. However, there is little experience with the interpretation of QoL results. Methods:To guide interpretation of QoL results from a randomised controlled trial (RCT) targeting the effectiveness of the immune modulator G-CSF on postoperative recovery in high risk (ASA III/IV) colorectal cancer patients, we compared RCT data with data from a population based cohort study and norm reference data. QoL was assessed using the European Organisation for the Research and Treatment of Cancer (EORTC) QLQ-C30 and CR38 questionnaires. QoL results were analysed on discharge from hospital and six months postoperatively. Results:Colorectal cancer patients (both from the RCT and the cohort study) showed the greatest differences in QoL scores compared to norm reference data at discharge from hospital. Six months postoperatively, global quality of life and pain approximated norm reference values indicating optimal recovery. However, deficits still appeared in scores for role functioning, physical functioning, social functioning and fatigue. The best improvements (discharge from hospital to six months postoperatively) were seen with respect to physical functioning, fatigue and pain. Conclusions:For further analysis of RCT data, physical functioning and fatigue scores may be more sensitive than global quality of life to detect differences in treatment effects.  相似文献   

6.

Introduction

Patients with congenital agammaglobulinemia, characterized by a defect in B lymphocyte differentiation causing B alymphocytosis, require life-long IgG replacement. There is scant literature regarding the effectiveness of IgG treatment at preventing mucosal (particularly sinopulmonary tract) infection and whether current management adequately restores “normal” health and quality of life (QoL). We aimed to document infective episodes pre- and post-commencing IgG replacement, determine any change in lung function and structure and assess respiratory status and QoL in a cohort of patients treated in Newcastle.

Methods

Clinical data were extracted from medical records of 15 patients identified from the immunology database, focusing on infective episodes, serial chest CT and spirometry results. Thirteen patients completed a selection of standardized and validated questionnaires assessing physical health, respiratory health and QoL.

Results

Pediatric patients on IgG therapy suffered fewer infections per patient year (0.74) than adults (2.13). 6/14 patients showed deteriorating respiratory status despite adequate therapy. Health questionnaires revealed a significant burden of respiratory disease on a patient’s life.

Conclusion

Clinical data showed patients with congenital agammaglobulinemia receiving immunoglobulin therapy retained a higher than average infection rate, most of which affected mucosal barriers. Most patients self-reported worse respiratory symptoms, a lower respiratory-related QoL and a lower general health QoL relative to a healthy population. Most participants had progressive structural lung damage and decreased lung function. These results suggest that current management is not entirely effective at preventing deterioration of respiratory health or restoring QoL.
  相似文献   

7.

Introduction

Patients with primary immunodeficiency (PID) often report fatigue, yet this symptom has not been studied in PID. Fatigue affects 6–7.5% of healthy adults. The goal of this study is to estimate the prevalence of fatigue in patients with PID and investigate its associated factors.

Methods

We analyzed 2537 PID patients registered in USIDNET to determine responses to the field “fatigue” in the core registry form. Demographics, immune phenotypes, and comorbid conditions were compared between fatigued and non-fatigued patients to identify relevant associations and potential drivers. A focused analysis was performed for patients with predominantly antibody deficiency disorders (PADs).

Results

Fatigue was reported in 25.9% (95% CI 23.7–28.3) of PAD patients, compared to 6.4% (95% CI 4.9–8.2) of non-PAD. Patients with common variable immunodeficiency (CVID) had the highest prevalence of fatigue (p < 0.001) among all PID diagnoses. Other factors that were associated with a higher rate of fatigue among PAD patients included female sex, higher BMI, depression, bronchiectasis, and autoimmunity. Additionally, fatigued PAD patients had lower absolute lymphocyte, CD3, CD4, and CD8 counts compared to non-fatigued patients.

Conclusion

Our findings suggest that fatigue is overrepresented in PAD patients. Prospective studies to estimate prevalence, risk factors, and fatigue etiology in PID are warranted, so therapeutic interventions can be considered.
  相似文献   

8.

Purpose

Guided by the Transactional Model of Stress and Coping, the purpose of this cross-sectional study was to examine clinical factors—demographics, chronic obstructive pulmonary disease (COPD) severity, cognitive/perceptual variables (appraisal and coping)—and their relationship to clinically elevated symptoms of anxiety in a sample of veterans with COPD.

Method

Participants included a sample of veterans with COPD, with or without comorbid congestive heart failure, and clinically significant symptoms of anxiety (n = 172, mean age = 65.3, SD = 8.1), who previously presented to an outpatient VA setting. Participants completed questionnaires examining COPD severity (respiratory impairment and dyspnea- and fatigue-related quality of life); perceptions of a stressor (COPD illness intrusiveness); perceptions of control (locus of health control, mastery over COPD, self-efficacy); coping strategies (adaptive and maladaptive); and anxiety and depressive symptoms.

Results

Multivariable linear regressions revealed that anxiety was positively associated with more maladaptive coping and locus of control (attributed to other people), above and beyond disease severity, demographics, and depressive symptoms.

Conclusion

These findings suggest that cognitive and perceptual factors are concurrent with anxiety; however, longitudinal investigations are needed to fully understand this relationship. Future research should also focus on identifying optimal assessment and treatment procedures when evaluating and treating patients with COPD and symptoms of anxiety.

Trial Registration

NCT01149772
  相似文献   

9.
10.

Background

Prolonged fatigue can cause physical, mental and occupational disability. Fatigue often persists because of a combination of biopsychosocial factors.

Purpose

To evaluate the process and outcomes of three existing outpatient vocational rehabilitation interventions (VRI) in patients with prolonged fatigue complaints. The VRIs differ with regard to the content and treatment duration, enrolment procedure and financing.

Method

A pre-post design was used with repeated measurements before treatment, after treatment and 3 months after treatment. Primary outcomes (fatigue and work participation) and secondary outcomes (physical and social functioning, mental health and physiological indicators (heart rate variability)) were assessed over time using linear mixed models analysis. A process evaluation (i.e. patient reach, content completeness and patient satisfaction) was conducted as well.

Results

One hundred patients participated. Post-treatment, fatigue decreased (p?<?.001) and work participation (p?<?.010), physical functioning (p?<?.001) and mental health (p?<?.001) improved considerably in all three VRIs. Social functioning improved in one VRI (p?=?.022), but did not in the other two (p?=?.442, p?=?.196, respectively). Physiologically, heart rate variability improved in two VRIs (p?=?.044, p?=?.038, respectively). VRIs were administered according to the programme protocol. Almost all patients met their personal goals and the majority was satisfied with the outcomes of diminished constraints at work.

Conclusion

Three VRIs showed significant and clinically relevant outcomes over time regarding decreased fatigue and improved functioning and work participation in fatigued patients. The VRIs administered patient-tailored biopsychosocial interventions as planned and patients were satisfied with the interventions.  相似文献   

11.

Context:

Quality of life (QoL) is an important issue in all cancer patients; especially in patients with metastatic cancer. But there is very little information available about QoL in patients with metastatic gastrointestinal cancer.

Aims:

The aim of this study was to evaluate the quality of life and its associated factors among Iranian patients with metastatic gastrointestinal tract cancer.

Materials and Methods:

In this cross-sectional study, a total of 250 patients with metastatic gastrointestinal tract cancer were recruited from the one oncology center related to the Mazandaran University of Medical Sciences, Sari, between March 2012 and August 2013. Their QoL was evaluated using the EORTC QLQ-C30 questionnaire (Persian version).

Results:

In this study, the overall QoL score of patients with gastrointestinal tract cancer was 57.63, which was relatively optimal. There was a statistically significant relationship between symptoms scale and general health status domains of quality of life with age (P < 0.05). Also, there was a significant association between patients’ gender and their social functioning (P = 0.017) and also their emotional functioning (P = 0.015).

Conclusions:

The findings suggest that in patients with metastatic gastrointestinal cancers, the most affected functions in their QoL were social and emotional functioning which get worse with age. Thus, providing psychological counseling and psychotherapy services to deliver culturally appropriate mental health care and social support for these patients and their families’ which can lead to the improvement of QoL in these patients is strongly recommended.  相似文献   

12.
13.

Background

Chronic Obstructive Pulmonary Disease (COPD) is a major challenge for healthcare. Heterogeneities in clinical manifestations and in disease progression are relevant traits in COPD with impact on patient management and prognosis. It is hypothesized that COPD heterogeneity results from the interplay of mechanisms governing three conceptually different phenomena: 1) pulmonary disease, 2) systemic effects of COPD and 3) co-morbidity clustering.

Objectives

To assess the potential of systems medicine to better understand non-pulmonary determinants of COPD heterogeneity. To transfer acquired knowledge to healthcare enhancing subject-specific health risk assessment and stratification to improve management of chronic patients.

Method

Underlying mechanisms of skeletal muscle dysfunction and of co-morbidity clustering in COPD patients were explored with strategies combining deterministic modelling and network medicine analyses using the Biobridge dataset. An independent data driven analysis of co-morbidity clustering examining associated genes and pathways was done (ICD9-CM data from Medicare, 13 million people). A targeted network analysis using the two studies: skeletal muscle dysfunction and co-morbidity clustering explored shared pathways between them.

Results

(1) Evidence of abnormal regulation of pivotal skeletal muscle biological pathways and increased risk for co-morbidity clustering was observed in COPD; (2) shared abnormal pathway regulation between skeletal muscle dysfunction and co-morbidity clustering; and, (3) technological achievements of the projects were: (i) COPD Knowledge Base; (ii) novel modelling approaches; (iii) Simulation Environment; and, (iv) three layers of Clinical Decision Support Systems.

Conclusions

The project demonstrated the high potential of a systems medicine approach to address COPD heterogeneity. Limiting factors for the project development were identified. They were relevant to shape strategies fostering 4P Medicine for chronic patients. The concept of Digital Health Framework and the proposed roadmap for its deployment constituted relevant project outcomes.
  相似文献   

14.

Background

Multi-component vocational rehabilitation (VR) provides positive short-term outcomes in patients with prolonged fatigue.

Purpose

The purpose of this study is to evaluate the long-term outcomes of Dutch multi-component VR up to 18 months after treatment.

Method

In a pre–post-study, measurements were taken before treatment (t0), after treatment (t1) and in long-term follow-ups at 6 (t2), 12 (t3) and 18 months (t4) after treatment. Primary outcomes (fatigue, work participation and workability) and secondary outcomes [physical and social functioning, mental health and heart rate variability (HRV)] were assessed over time using linear mixed models analyses. Post hoc long-term outcomes were compared with t0 and t1.

Results

Sixty patients with severe fatigue complaints participated. The primary outcomes significantly (p?<?0.001) improved at follow-ups compared with t0 and showed no relapse compared with t1. Moreover, fatigue decreased (p?<?0.002) whereas workability (p?<?0.001) and work participation (p?<?0.001) increased further after treatment (t1). The secondary outcomes, physical functioning, mental health, social functioning and HRV, improved significantly (p?<?0.001, p?<?0.001, p?<?0.001 and p?=?0.049, respectively) over the long term compared with t0. At 6-month follow-up (t2), mental health (p?<?0.003) and social functioning (p?=?0.003) further increased after the treatment was stopped.

Conclusion

Multi-component VR treatments seem to significantly and in a clinically relevant way decrease fatigue symptoms and improve individual functioning and work participation in patients with severe prolonged fatigue over the long term and without showing relapse.  相似文献   

15.

Background and hypothesis

Heterogeneity in clinical manifestations and disease progression in Chronic Obstructive Pulmonary Disease (COPD) lead to consequences for patient health risk assessment, stratification and management. Implicit with the classical "spill over" hypothesis is that COPD heterogeneity is driven by the pulmonary events of the disease. Alternatively, we hypothesized that COPD heterogeneities result from the interplay of mechanisms governing three conceptually different phenomena: 1) pulmonary disease, 2) systemic effects of COPD and 3) co-morbidity clustering, each of them with their own dynamics.

Objective and method

To explore the potential of a systems analysis of COPD heterogeneity focused on skeletal muscle dysfunction and on co-morbidity clustering aiming at generating predictive modeling with impact on patient management. To this end, strategies combining deterministic modeling and network medicine analyses of the Biobridge dataset were used to investigate the mechanisms of skeletal muscle dysfunction. An independent data driven analysis of co-morbidity clustering examining associated genes and pathways was performed using a large dataset (ICD9-CM data from Medicare, 13 million people). Finally, a targeted network analysis using the outcomes of the two approaches (skeletal muscle dysfunction and co-morbidity clustering) explored shared pathways between these phenomena.

Results

(1) Evidence of abnormal regulation of skeletal muscle bioenergetics and skeletal muscle remodeling showing a significant association with nitroso-redox disequilibrium was observed in COPD; (2) COPD patients presented higher risk for co-morbidity clustering than non-COPD patients increasing with ageing; and, (3) the on-going targeted network analyses suggests shared pathways between skeletal muscle dysfunction and co-morbidity clustering.

Conclusions

The results indicate the high potential of a systems approach to address COPD heterogeneity. Significant knowledge gaps were identified that are relevant to shape strategies aiming at fostering 4P Medicine for patients with COPD.
  相似文献   

16.

Background

Cancer can produce many different symptoms, some subtle and some not at all subtle. An increasingly important issue in oncology is to evaluate quality of life (QoL) in cancer patients. The cancer-specific QoL is related to all stages of this disease.

Objective

The aim of this study was to evaluate the QoL in cancer patients with solid tumors and at the different chemotherapy cycles (CT).

Methods

This was a cross-sectional study. A total of 200 cancer patients were included. With some modification, the European Organization for Research and Treatment of Cancer QoL Questionnaire (EORTC QLQ-C30) was used to measure QoL in the patients. The QoL in most subjects (66%) was fairly favorable.

Results

A significant relationship between the cancer type, pain intensity, and fatigue was found. However, none of the demographic variables (age, education, marital status, income) were significantly related to QoL. Nevertheless, significant difference was found between the level of QoL in patients with ≤ 2 CT cycles and/or with 3–5 cycles (p< 0.001).

Conclusion

Cancer is an important health issue influencing QoL. An appropriate treatment which may provide care to the cancer patients is CT. A CT cycle may improve QoL in patients with solid tumors.  相似文献   

17.

Purpose

The main research question is: “Do CFS patients differ from fatigued non-CFS patients with respect to physical, cognitive, behavioral, social, and emotional determinants?” In addition, group differences in relevant outcomes were explored.

Method

Patients who met the Centers for Disease Control (CDC) criteria for CFS were categorized as CFS; these patients were mainly recruited via a large Dutch patient organization. Primary care patients who were fatigued for at least 1 month and up to 2 years but did not meet the CDC criteria were classified as fatigued non-CFS patients. Both groups were matched by age and gender (N?=?192 for each group).

Results

CFS patients attributed their fatigue more frequently to external causes, reported a worse physical functioning, more medical visits, and a lower employment rate. The results of a multiple logistic regression analysis showed that patients who believe that their fatigue is associated with more severe consequences, that their fatigue will last longer and is responsible for more additional symptoms are more likely to be classified as CFS, while patients who are more physically active and have higher levels of “all or nothing behavior” are less likely to be classified as having CFS.

Conclusion

A longitudinal study should explore the predictive value of the above factors for the transition from medically unexplained fatigue to CFS in order to develop targeted interventions for primary care patients with short-term fatigue complaints.
  相似文献   

18.

Objective

To describe nurse–patient and rheumatologist–patient interaction in fatigue communication at the rheumatology out-patient clinic.

Methods

Consultations of 20 rheumatoid arthritis (RA) patients with the nurse specialist and the rheumatologist were videotaped and analysed using the Medical Interview Aural Rating Scale (MIARS). Subsequently, patients were asked to fill out a concern questionnaire asking how worried they felt and how satisfied they were with attention given by both healthcare professionals. Finally, patients were interviewed on reasons for being not or not completely satisfied with the care received.

Results

Fatigue was discussed in 42% of the rheumatologists’ consultations and 83% of the nurse specialists’ consultations. RA patients more often used implicit cues instead of explicit concerns related to fatigue. Almost 72% of the patients felt worried about fatigue and in general they were more satisfied with the nurse specialist's attention to fatigue than with the attention from the rheumatologist.

Conclusion

Fatigue is not structurally communicated at the rheumatology out-patient clinic and exploring and acknowledging communication techniques can help patients to express their concerns about fatigue.

Practice implications

Healthcare professionals must recognise fatigue as a severe problem for RA patients and start the conversation on fatigue instead of waiting for the patient to mention fatigue spontaneously.  相似文献   

19.

Purpose

Infertility could be highly stressful, particularly in a pronatalist culture. We aimed to develop the concept and a measure of normalization (maintaining normal life routines and feeling “normal”) as a strategy that could enable women with infertility maintain their quality of life (QoL) while coping with this condition. We tested its associations with women’s well-being, distress and QoL in Israel, where being childless is socially unacceptable and highly stigmatized.

Methods

One-hundred and eighty Israeli women undergoing infertility treatment at a fertility community clinic filled in questionnaires assessing normalization-related coping strategies, QoL, and psychological adjustment (distress, wellbeing). Eight months later, 55 women conceived; 55 women who had not conceived completed a second questionnaire.

Results

At baseline, normalization was related to higher QoL and better adjustment. Structural equation modeling showed that QoL was impaired mainly among women who felt different than others, compared, and blamed themselves. Over time, normalization was overall unrelated to conception or to changes in adjustment yet was protective against decrease in well-being among women who already had a child.

Conclusions

Infertility is highly stressful in a pronatalist culture like Israel. It requires treatment yet is not disabling. Patients who manage to maintain normal routines and not feel different than other people their age may experience better QoL and psychological adjustment.
  相似文献   

20.

Objective

This study aimed to identify the predictive role of direct resources (educational level and marital status) and self-management abilities on physical health and depressive symptoms in patients with cardiovascular diseases (CVD), diabetes, or chronic obstructive pulmonary disease (COPD).

Methods

Our cross-sectional questionnaire-based study included 1570 CVD patients, 917 COPD patients, and 412 patients with diabetes.

Results

Physical health and depressive symptoms of COPD patients was lower than those of CVD and diabetic patients. Correlation analyses indicated that self-management abilities were strong indicators for physical health and depressive symptoms (all p < 0.001). This relationship was strongest for depressive symptoms. Self-management abilities were related to educational level in all groups (all p < 0.001). Regression analyses revealed that self-management abilities were strong predictors of physical health and depressive symptoms in all three patient groups (all p < 0.001).

Conclusion

This research showed that self-management abilities are strong predictors of physical health and depressive symptoms.

Practice implications

Interventions that improve self-management abilities may counteract a decline in physical health and depressive symptoms. Such interventions may be important tools in the prevention of the loss of self-management abilities, because they may motivate people who are not yet experiencing serious problems.  相似文献   

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