The clinical effectiveness of the COPDnet integrated care model.

RATIONALE: Integrated care models have the potential to improve outcomes for patients with COPD. We therefore designed the COPDnet integrated care model and implemented it in two hospitals and affiliated primary care regions in the Netherlands. The COPDnet model consists of a comprehensive diagnostic trajectory ran in secondary care followed by a non-pharmacological intervention program of both monodisciplinary and multidisciplinary components. OBJECTIVE: To assess the clinical effectiveness of the COPDnet integrated care model on health status change in patients with COPD. METHODS: A total of 402 patients with COPD were offered care according to the COPDnet model. At baseline and between 7- and 9-months later health status was measured with the Clinical COPD Questionnaire (CCQ). Primary analysis was carried out for the sample at large. In addition, subgroup analyses were performed after stratification for the type of non-pharmacological intervention where patients had been referred to. RESULTS: The CCQ total score improved statistically significantly from 1.94 ± 1.04 to 1.73 ± 0.96 (P < 0.01) in the 154 patients with valid follow-up measurements. Subgroup analyses revealed significant improvements in the patients receiving pulmonary rehabilitation only. No change in health status was found in patients receiving pharmacotherapy only, carried out self-treatment or who participated in mono-disciplinary primary care offered by allied healthcare professionals. CONCLUSIONS: An improved health status was found in patients with COPD who received care according to the COPDnet integrated care model. Subgroups participating in an interdisciplinary pulmonary rehabilitation program predominantly accounted for this effect.

'Exacerbation-free time' to assess the impact of exacerbations in patients with chronic obstructive pulmonary disease (COPD): a prospective observational study.

COPD exacerbations are commonly quantified as rate per year. However, the total amount of time a patient suffers from exacerbations may be stronger related to his or her disease burden than just counting exacerbation episodes. In this study, we examined the relationship between exacerbation frequency and exacerbation-free time, and their associations with baseline characteristics and health-related quality of life. A total of 166 COPD patients reported symptom changes during 12 months. Symptom-defined exacerbation episodes were correlated to the number of exacerbation-free weeks per year. Analysis of covariance was used to examine the effects of baseline characteristics on annual exacerbation frequency and exacerbation-free weeks, Spearman's rank correlations to examine associations between the two methods to express exacerbations and the Chronic Respiratory Questionnaire (CRQ). The correlation between exacerbation frequency and exacerbation-free weeks was -0.71 (p < 0.001). However, among frequent exacerbators (i.e., ≥3 exacerbations/year, n = 113) the correlation was weak (r = -0.25; p < 0.01). Smokers had less exacerbation-free weeks than non-smokers (ß = -5.709, p < 0.05). More exacerbation-free weeks were related to better CRQ Total (r = 0.22, p < 0.05), Mastery (r = 0.22, p < 0.05), and Fatigue (r = 0.23, p < 0.05) scores, whereas no significant associations were found between exacerbation frequency and CRQ scores. In COPD patients with frequent exacerbations, there is substantial variation in exacerbation-free time. Exacerbation-free time may better reflect the burden of exacerbations in patients with COPD than exacerbation frequency does.

Surprisingly few psychological problems and diabetes-related distress in patients with poor glycaemic control.

OBJECTIVE: Poor glycaemic control is an undesirable, but frequently encountered problem in diabetes. Reasons for not achieving optimal glycaemic control are not yet clear. A common belief is that psychological factors contribute importantly. This study compared general psychological problems and diabetes-related distress between patients with persistently poor glycaemic control to patients with optimal glycaemic control. METHODS: Patients from an outpatient clinic with type 1 or type 2 diabetes with a mean HbA1c ≥ 86 mmol/mol (≥ 10%) over two consecutive years (poor-control, n = 32) and those with diabetes and a mean HbA1c ≤ 53 mmol/mol (≤ 7%) over two consecutive years (optimal-control, n = 53) were studied. Clinical characteristics were obtained from the medical records. Psychological characteristics were investigated cross-sectionally using questionnaires. RESULTS: Patients in the poor-control group had a higher BMI compared with the optimal-control group. Self- reported previous anxiety was more prevalent in the poor-control group (34 versus 9%). All other mean test scores and proportions of subjects above cut-off levels were similar in the two groups. CONCLUSIONS: Patients with diabetes and persistently poor glycaemic control have surprisingly few psychological problems and diabetes-related emotional distress. It seems that people with diabetes do not see persistent poor glycaemic control as a problem.

Persistence of impaired health status of Q fever patients 4 years after the first Dutch outbreak.

A significant proportion of Q fever patients from the first Dutch Q fever outbreak in 2007 showed impairment in health status up to 1 year after infection. Interested in whether this decrease in health status persisted, we set out to determine the health status in the same cohort of patients, 4 years after primary infection and to compare health status scores at the individual patient level between 1 and 4 years follow-up. Health status was assessed with the Nijmegen Clinical Screening Instrument (NCSI). Patients were serologically tested to exclude patients with possible, probable or proven chronic Q fever. Results on the NCSI sub-domains at group level [2008 (n = 54) and 2011 (n = 46)] showed a persistent significant percentage of patients exhibiting clinically relevant ('severe') scores for all NCSI sub-domains. After 4 years, undue fatigue was present in 46% and exactly half of all patients experienced a severely impaired general quality of life. Patients with NCSI scores available in both 2008 and 2011 (n = 37) showed no difference in all sub-domain scores, except for a small decrease in dyspnoea emotions in 2011. In this group, a significant proportion of patients either improved or worsened in one or more sub-domains of health status. We conclude that at the group level, health status of Q fever patients remained impaired 4 years after primary infection. At the individual patient level, health status may change.

Detailed analysis of health status of Q fever patients 1 year after the first Dutch outbreak: a case-control study.

BACKGROUND: Q fever is a zoonosis caused by the obligate intracellular bacterium Coxiella burnetii. The two long-term complications, after primary infection, are chronic Q fever in ∼1% of patients, and a chronic fatigue syndrome in 10-20%. However, the existence of a protracted decreased health status after Q fever remains controversial. AIM: To determine the health status of the patients of the Q fever outbreak in The Netherlands in 2007, 1 year after primary infection. DESIGN: Cross-sectional case-control study. METHODS: Health status of the patients from the 2007 Dutch Q fever outbreak was compared to age-, sex- and geographically matched and Q fever seronegative controls. Health status of both patients and controls was assessed with the Nijmegen Clinical Screening Instrument (NCSI). RESULTS: Fifty-four Q fever patients provided 34 years of age- and sex-matched controls from the same neighbourhood. Eleven controls had positive Q fever serology and were excluded. Q fever patients had significantly more problems on the subdomains of symptoms and functional impairment. Overall quality of life was decreased in both patients and controls, 59% vs. 39%, respectively, ns). Severe fatigue levels were present in 52% of patients vs. 26% in controls (P < 0.05). CONCLUSION: These data support a sustained decrease in many aspects of health status in Q fever patients in The Netherlands, 1 year after primary infection.

Maximal exercise capacity in chronic obstructive pulmonary disease: a limited indicator of the health status.

BACKGROUND: Dyspnoea and diminished functional status are pivotal features of the health status (HS) in chronic obstructive pulmonary disease (COPD). However, it is still not fully understood how pulmonary function tests and cardiopulmonary exercise testing relate to these aspects. This may be due to incomplete assessment and/or deficient definitions of HS. Especially regarding peak oxygen consumption, inconsistent results have been reported. OBJECTIVES: To determine the value of maximal cycle ergometry in relation to a broad spectrum of HS aspects. METHODS: 129 patients with COPD, stage II and III according to the GOLD classification, performed a cardiopulmonary exercise test. Sixteen independent sub-domains of HS were assessed according to the Nijmegen Integral Assessment Framework, covering physiological functioning, complaints, functional impairments and quality of life as main domains. VO(2)(max) and HS sub-domains were correlated by bivariate analysis. RESULTS: Weak correlations of VO(2)(max) with most sub-domains were found, except for exercise capacity; the other 5 sub-domains of physiological functioning did not correlate. Between different types of exercise limitation (5 types were differentiated), no significant differences were noted in the scores of 13/16 HS sub-domains. CONCLUSIONS: VO(2)(max) is indeed correlated with most aspects of HS, except for physiological variables, but associations are weak. No single exercise limitation type is associated with specific HS problems. Thus separate assessment of all HS sub-domains is advocated to ensure adequate planning of therapeutic interventions.

Asthma and chronic obstructive pulmonary disease: differences between workers with and without sick leave.

OBJECTIVE: Determinants of sick leave should be investigated before interventions to reduce sick leave can be designed. This cross-sectional study compares employees with asthma and chronic obstructive pulmonary disease (COPD) with and without sick leave. METHODS: One hundred and eighteen participants with asthma and 71 with COPD underwent a lung function test [one-second forced expiratory volume (FEV1), forced vital capacity (FVC)] and completed questionnaires on health complaints, work characteristics, demographic and psychosocial variables, and self-reported sick leave in the past 12 months. Backward multivariate logistic regression analyses, with sick leave (no/any) as dependent variable, were conducted for asthma, COPD, and the total group. RESULTS: Lung function measures were not significantly associated with sick leave in any group (P > 0.05). For asthma, psychosocial variables (spending all energy at work, OR 0.7) and health complaints (frequency of dyspnoea, OR 0.4 and breathing problems such as coughing, wheezing, OR 1.1) were associated with sick leave. In the COPD group, age (OR 0.9) was the only significant variable to be maintained in the model. In the total group, work characteristics (adjustment in work pace, OR 3.3), age (OR 0.9) and spending all energy at work (OR 0.7) were maintained in the final model. CONCLUSION: Severity of the disease, as measured by lung function, is not a determinant of sick leave in asthma and COPD. Different processes play a role in asthma and COPD. Interventions for reducing sick leave should aim more at psychosocial factors than at treating the severity of the disease.

Measurement of prolonged fatigue in the working population: determination of a cutoff point for the checklist individual strength.

In the Netherlands, a large-scale prospective cohort study was started on prolonged fatigue in the working population. The 1st issue that had to be addressed was the determination of a cutoff point for fatigue for use in the working population. Fatigue is measured with the Checklist Individual Strength (CIS), a 20-item self-report questionnaire. This article demonstrates the process of decision making in the determination of the cutoff point. Total CIS scores were calculated, sensitivity and specificity were compared for potential cutoff points, and a receiver operating characteristics analysis was conducted. A CIS total cutoff point for fatigue of >76 was determined, with a specificity of 90% and a sensitivity of 73%. Limitations regarding the use of cutoff points are discussed. It is concluded that the defined cutoff point seems to be appropriate for use in the working population.

Fatigue among working people: validity of a questionnaire measure.

OBJECTIVES: To evaluate the validity of the checklist individual strength questionnaire (CIS) in the working population. This 20 item self reported questionnaire has often been used in patients with chronic fatigue. To date, no research has focused on the validity of the CIS in occupational groups. METHODS: To evaluate the discriminant validity the CIS was filled out by five groups of employees with expected differences in fatigue. The convergent validity was evaluated by comparing the results of the CIS with the results of three related measures: measured unidimensional fatigue, burnout, and need for recovery. RESULTS: The CIS was able to discriminate between fatigued and non-fatigued employees in occupational groups. The expected agreement between the results of the CIS and related measures was confirmed. CONCLUSIONS: The CIS seems to be an appropriate instrument for measuring fatigue in the working population.

Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment.

OBJECTIVE: Changes in physical activity are thought to play an important role in maintaining symptoms in chronic fatigue syndrome (CFS). The aim of this study was to describe intraindividual physical activity patterns in more detail and to identify pervasively passive patients. METHODS: With help of a movement-sensing device, physical activity levels were registered continuously over a 12-day period in 277 CFS patients. Within this registration period, the 10 largest activity peaks were computed. The intensity and duration of these activity peaks and their subsequent rest periods were described and compared to those of 47 healthy controls. In addition, the patients' 12 daily activity scores were used to identify patients who were characterised by low levels of physical activity throughout the registration period. RESULTS: The CFS sample had less intense and shorter activity peaks, while the average rest periods that followed these peaks lasted longer. Approximately one-fourth of the CFS sample differed distinctly from the control group and was labelled as pervasively passive. CONCLUSION: The measurements and classification of actual physical activity levels were found to reduce heterogeneity in the CFS population and therefore could provide the opportunity to optimise behavioural intervention protocols for CFS.

Chronic Fatigue Syndrome and Primary Fibromyalgia Syndrome as recognized by GPs.

BACKGROUND: Prevalence studies on Chronic Fatigue Syndrome (CFS) are rare. Because of the similarity in symptoms, the prevalence of Primary Fibromyalgia Syndrome (PFS) was investigated at the same time. OBJECTIVES: To determine the prevalence of CFS and PFS as recognized by GPs in The Netherlands and to inform them of the existence of CFS. METHODS: A postal questionnaire was sent to all GPs. RESULTS: The questionnaire was returned by 60% of the GPs. Seventy-three per cent reported one or more CFS patients and 83% one or more PFS patients in their practice. CONCLUSION: The estimated prevalence of CFS as recognized by GPs of 112 (PFS 157) patients per 100,000 is a minimum estimate.

The persistence of fatigue in chronic fatigue syndrome and multiple sclerosis: development of a model.

The cause of chronic fatigue syndrome (CFS) is unknown. With respect to factors perpetuating fatigue, on the other hand, a model has been postulated in the literature in which behavioral, cognitive, and affective factors play a role in perpetuating fatigue. In the present study, this hypothesized model was tested on patients with CFS and on fatigued patients with multiple sclerosis (MS). The model was formulated in terms of cause-and-effect relationships and an integral test of this model was performed by the statistical technique, "structural equation modeling," in 51 patients with chronic fatigue syndrome and 50 patients with multiple sclerosis matched for age, gender, and education. Attributing complaints to a somatic cause produced low levels of physical activity, which in turn had a causal effect on fatigue severity. Depression had to be deleted from the model. Sense of control over symptoms and focusing on bodily symptoms each had a direct causal effect on fatigue. The model showed an excellent fit for CFS patients, but was rejected for MS patients. Therefore, a new model for MS patients had to be developed in which sense of control had a causal effect on fatigue. In the MS model, no causal relationship was found between the physical state as measured by the Expanded Disability Status Score (EDSS) and fatigue or functional impairment. The present study shows that cognitive and behavioral factors are involved in the persistence of fatigue. Treatment should be directed at these factors. The processes involved in the subjective experience of fatigue in CFS were different from the processes related to fatigue in MS.

Yersinia enterocolitica and the chronic fatigue syndrome.

OBJECTIVES: To investigate the potential role of Yersinia enterocolitica in patients with chronic fatigue syndrome (CFS). METHODS: An immunoblot technique was used to detect antibodies to various Yersinia outer membrane proteins (YOPs) in serum samples from 88 patients with CFS and 77 healthy neighbourhood controls, matched for gender and age. RESULTS: The prevalence of IgG and IgA antibodies to various Yersinia outer membrane proteins (YOPs) did not differ between patients with CFS and healthy controls. Twenty-four patients (27%) and nineteen controls (25%) had IgG antibodies to one or more YOPs. Four patients and two controls had both serum IgG and IgA antibodies to at least two different YOPs, compatible with a recent or persistent infection. Although all patients with positive IgG and IgA reactions to two or more YOPs had symptoms that could point to persistent Yersinia infection, these symptoms were also found frequently in patients without antibodies to YOPs. CONCLUSIONS: We conclude that Y. enterocolitica is unlikely to play a major role in the aetiology of CFS.

Evaluating neuropsychological impairment in chronic fatigue syndrome.

This study was designed to provide an estimate of the prevalence of neuropsychological impairment in chronic fatigue syndrome (CFS), to evaluate the concordance between impairment found on standardized tests and self-reported neuropsychological problems, and to study the relationship between neuropsychological functioning and fatigue severity and psychological processes. We adopted an individual approach to determine neuropsychological impairment as contrasted with the group-comparisons approach used in previous studies. Also, correction for premorbid functioning and confounders was done on an individual basis. The results show that a minority of participants were impaired in neuropsychological functioning. There was no relationship between neuropsychological impairment on standardized tests and self-reported memory and concentration problems. Neuropsychological functioning was not related to fatigue or depression. Slowed speed of information processing and motor speed were related to low levels of physical activity.

The chronic fatigue syndrome and hyperventilation.

Chronic fatigue syndrome (CFS) is characterized by severe fatigue, lasting for at least 6 months, for which no somatic explanation can be found. Because hyperventilation can produce substantial fatigue, it seems worthwhile to investigate the relationship between it and CFS. It might be hypothesized that hyperventilation plays a causal or perpetuating role in CFS. CFS patients, non-CFS patients known to experience hyperventilation, and healthy controls were compared on complaints of fatigue and hyperventilation. CFS patients and non-CFS patients known to experience hyperventilation offered substantial complaints of fatigue and hyperventilation, both to a similar degree. Physiological evidence of hyperventilation was found significantly more often in CFS patients than in healthy controls. However, no significant differences between CFS patients with and CFS patients without hyperventilation were found on severity of fatigue, impairment, number of complaints, activity level, psychopathology, and depression. It is concluded that hyperventilation in CFS should probably be regarded as an epiphenomenon.

[Prevalence of chronic fatigue syndrome and primary fibromyalgia syndrome in The Netherlands]. / 1Prevalentie van het chronische-vermoeidheidsyndroom en het primaire-fibromyalgiesyndroom in Nederland.

OBJECTIVE: To determine the prevalence of chronic fatigue syndrome (CFS) and of primary fibromyalgia syndrome (PFS) in the Netherlands. DESIGN: Questionnaire. SETTING: Department of Medical Psychology, University Hospital Nijmegen, the Netherlands. METHOD: A questionnaire was mailed to all the 6657 general practitioners in the Netherlands in order to inform them of the existence of CFS and to ask them if they had any CFS or PFS patients in their practices. RESULTS: Sixty percent (n = 4027) of the general practitioners returned the questionnaire. Of all the general practitioners, 27% said they had no CFS patients, 23% said they had 1 CFS patient, while 21% had 2 CFS patients, and 29% said they had 3 or more CFS patients in their practice. Concerning PFS the results were 17% (no PFS patients), 18%, 18% and 47%, respectively. With a mean practice of 2486 patients per general practice, the estimated prevalence of CFS was 112 per 100,000 and that of PFS 157 per 100,000 persons. Of the CFS patients 81% were women and 55% were 25-44 years old; for PFS these figures were 87% and 48% respectively. CONCLUSION: Extrapolation of the study results indicates that there are at least 17,000 CFS patients and 24,000 PFS patients in the Netherlands. The found prevalence is probably an under-estimation.

['Abbreviated fatigue questionnaire': a practical tool in the classification of fatigue]. / 'Verkorte vermoeidheidsvragenlijst': een praktisch hulpmiddel bij het scoren van vermoeidheid.

The 'Shortened fatigue questionnaire' (SFQ) is a short, reliable and easily used instrument to determine the intensity of the patient's bodily fatigue. It consists of four questions which the patient answers by checking an item at a 7-point scale ('I feel tired', 'I tire easily', 'I feel fit' and 'I feel physically exhausted'). The physician can then calculate a total score and compare it with the score in standard groups (standardized by load-bearing). The questionnaire can be completed simply and quickly. It constitutes a valuable addition in daily medical practice and in clinical scientific studies for the assessment of fatigue complaints.

Physical activity in chronic fatigue syndrome: assessment and its role in fatigue.

This paper describes the assessment of physical activity in chronic fatigue syndrome (CFS) and investigated the following questions: Do patients with CFS have low levels of physical activity; is there a relationship between actual level of physical activity and fatigue; can self-report measures adequately assess actual level of physical activity; what is the role of cognitions with respect to physical activity; and are results with respect to physical activity specific to CFS? Three different types of activity measures were used: self-report questionnaires, a 12-day self-observation list, and a motion-sensing device (Actometer) which was used as a reference for actual activity level. Fifty-one patients with CFS, 50 fatigued patients with multiple sclerosis (MS), and 53 healthy subjects participated in this study. Although none of the self-report questionnaires showed high correlations with the Actometer, questionnaires that require simple ratings of specified activities were related to the Actometer and can be used as acceptable substitutes, in contrast to instruments that require general subjective interpretations of activity that had low or non-significant correlations with the Actometer. Actometer results showed that CFS patients and MS patients had similar activity levels and both groups were significantly less active than healthy subjects. Compared to MS patients, CFS patients were more likely to indicate that they had been less active than other persons they knew. Activities which patients expected to result in higher fatigue levels were less frequently performed. Patients with CFS had significantly higher scores on this measure than MS patients and healthy subjects. Low levels of physical activity were related to severe fatigue in CFS but not in MS. In conclusion, although CFS patients have similar low activity levels than MS patients, there are also important differences between both groups: in CFS cognitive factors are more prominently involved in producing the low activity levels than in MS and in CFS patients activity level is related to fatigue but not in MS.

The measurement of fatigue in patients with multiple sclerosis. A multidimensional comparison with patients with chronic fatigue syndrome and healthy subjects.

OBJECTIVE: To provide a multidimensional characterization of fatigue in patients with multiple sclerosis (MS). DESIGN: Cross-sectional design. Fifty patients with clinically definite MS were compared on the dimensions of fatigue with 51 patients with chronic fatigue syndrome (CFS) and 53 healthy subjects. RESULTS: Fourty-six percent of the patients with MS reported fatigue to be present at least once a week. Patients with MS and patients with CFS had significantly higher subjective fatigue severity scores than healthy subjects. Patients with MS and patients with CFS had significantly higher scores on measures of psychological well-being than healthy subjects. Patients with MS had scores similar to those of patients with CFS, except that patients with CFS had significantly higher somatization scores. High somatization scores reflect strong focusing on bodily sensations. Both groups of patients were significantly less active than the healthy subjects. The Kurtzke Expanded Disability Status Scale (EDSS) and the Beck Depression Inventory scores were not related to subjective fatigue severity. In patients with MS and in patients with CFS, subjective fatigue severity was related to impairment in daily life, low sense of control over symptoms, and strong focusing on bodily sensations. In CFS, but not in MS, evidence was found for a relationship between low levels of physical activity and attributing symptoms to a physical cause and between subjective fatigue severity and physical activity. CONCLUSIONS: Patients with MS experienced significant fatigue, which had a significant impact on daily functioning and was not related to depression on Expanded Disability Status Scale score. Psychological factors, such as focusing on bodily sensations and low sense of control play a role in the experience of fatigue in MS and CFS.

Prognosis in chronic fatigue syndrome: a prospective study on the natural course.

OBJECTIVE: To determine spontaneous improvement after a follow up interval of 18 months in patients with chronic fatigue syndrome and to identify factors that predict improvement. METHODS: A longitudinal study was used. Of 298 initially assessed self referred patients fulfilling criteria for chronic fatigue syndrome, 246 patients completed self report questionnaires at follow up (response rate 83%). A multidimensional assessment method was used, measuring behavioural, emotional, cognitive, and social functioning. Comparison data from 53 healthy subjects matched for age, sex, and educational level were available. RESULTS: Three per cent of patients reported complete recovery and 17% reported improvement. At follow up, there were considerable problems at work and consumption of medication was high. Subjective improvement was confirmed by dimensional change: at follow up recovered patients had similar scores to healthy subjects and improved patients showed significant improvement on four out of seven outcome measures and had higher scores than healthy subjects in all dimensions. Sociodemographic variables or treatment by specialists and alternative practitioners did not predict improvement. Predictors of improvement were: subjective sense of control over symptoms, less fatigue, shorter duration of complaints, and a relative absence of physical attributions. CONCLUSION: The improvement rate in patients with a relatively long duration of complaints is small. Psychological factors are related to improvement, especially cognitive factors.