There is an urgent need for consensus on what defines a chronic obstructive pulmonary disease (COPD) self-management intervention. We aimed to obtain consensus regarding the conceptual definition of ...a COPD self-management intervention by engaging an international panel of COPD self-management experts using Delphi technique features and an additional group meeting.In each consensus round the experts were asked to provide feedback on the proposed definition and to score their level of agreement (1=totally disagree; 5=totally agree). The information provided was used to modify the definition for the next consensus round. Thematic analysis was used for free text responses and descriptive statistics were used for agreement scores.In total, 28 experts participated. The consensus round response rate varied randomly over the five rounds (ranging from 48% (n=13) to 85% (n=23)), and mean definition agreement scores increased from 3.8 (round 1) to 4.8 (round 5) with an increasing percentage of experts allocating the highest score of 5 (round 1: 14% (n=3); round 5: 83% (n=19)).In this study we reached consensus regarding a conceptual definition of what should be a COPD self-management intervention, clarifying the requisites for such an intervention. Operationalisation of this conceptual definition in the near future will be an essential next step.
Pulmonary rehabilitation is recognized as a core component of the management of individuals with chronic respiratory disease. Since the 2006 American Thoracic Society (ATS)/European Respiratory ...Society (ERS) Statement on Pulmonary Rehabilitation, there has been considerable growth in our knowledge of its efficacy and scope.
The purpose of this Statement is to update the 2006 document, including a new definition of pulmonary rehabilitation and highlighting key concepts and major advances in the field.
A multidisciplinary committee of experts representing the ATS Pulmonary Rehabilitation Assembly and the ERS Scientific Group 01.02, "Rehabilitation and Chronic Care," determined the overall scope of this update through group consensus. Focused literature reviews in key topic areas were conducted by committee members with relevant clinical and scientific expertise. The final content of this Statement was agreed on by all members.
An updated definition of pulmonary rehabilitation is proposed. New data are presented on the science and application of pulmonary rehabilitation, including its effectiveness in acutely ill individuals with chronic obstructive pulmonary disease, and in individuals with other chronic respiratory diseases. The important role of pulmonary rehabilitation in chronic disease management is highlighted. In addition, the role of health behavior change in optimizing and maintaining benefits is discussed.
The considerable growth in the science and application of pulmonary rehabilitation since 2006 adds further support for its efficacy in a wide range of individuals with chronic respiratory disease.
Background
Self-management is key for reducing the burden of disease in chronical illness. However, applying self-management presupposes behavioral change. Sufficient knowledge, skills, confidence ...and motivation to make the needed behavior changes are important prerequisites. During the past years the Integral Diagnostic Trajectory was developed for patients with asthma or COPD which aims to identify treatable traits and activating patients for self-management.
Objective
In the present study the effects of the Integral Diagnostic Trajectory on the Patient Activation Measure (PAM
®
) were examined. In addition, predictive variables for PAM baseline scores and change scores were sought.
Materials and methods
A total of 241 patients with asthma or COPD referred to the pulmonologist at the Radboud university medical center, location Dekkerswald, Nijmegen were included. Patient activation was measured before the first visit and after the intervention with the 13-item PAM
®
. Additional, patient characteristics and health status were measured with the Nijmegen Clinical Screening Instrument (NCSI), modified Medical Research Council (mMRC), Asthma Control Questionnaire (ACQ), and COPD Clinical Questionnaire (CCQ).
Results
Fifty percent of the patients with asthma and seventy percent of the patients with COPD had low levels of activation at baseline (PAM level 1–2). Baseline PAM scores could be explained in patients with asthma for 7% by number of severe problems in health status. And for 18% in patients with COPD by number of severe problems, age and employment status. After the intervention both groups significantly improved on the PAM (T
0
: 56.0 ± 13.1 vs. T
1
:63.3 ± 14.0 in asthma, and T
0
: 50.0 ± 8.8 vs. 58.4 ± 11.1 in COPD). Multivariate stepwise regression analysis showed that only 24% of the change in score could be explained by baseline PAM score and being employed in patients with asthma, and 18% of the variance in change score could be predicted by baseline PAM score in COPD.
Conclusion
The present study showed that low level of activation is a common feature in patients with asthma and COPD. With a relatively short and seemingly simple intervention patients can reach higher levels of patient activation, which is a prerequisite for adopting self-management techniques in daily life.
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.
The burden of chronic obstructive pulmonary disease (COPD) on society is increasing. Healthcare systems should support patients with COPD in achieving an optimal quality of life, while limiting the ...costs of care. As a consequence, a shift from hospital care to home care seems inevitable. Therefore, patients will have to rely to a greater extent on informal caregivers. Patients with COPD as well as their informal caregivers are confronted with multiple limitations in activities of daily living. The presence of an informal caregiver is important to provide practical help and emotional support. However, caregivers can be overprotective, which can make patients more dependent. Informal caregiving may lead to symptoms of anxiety, depression, social isolation and a changed relationship with the patient. The caregivers' subjective burden is a major determinant of the impact of caregiving. Therefore, the caregiver's perception of the patient's health is an important factor. This article reviews the current knowledge about these informal caregivers of patients with COPD, the impact of COPD on their lives and their perception of the patient's health status.
In clinical practice and in self-management studies it appears that it is very difficult to change behaviour in patients with chronic obstructive pulmonary disease (COPD) in order to achieve adequate ...self-management. In this respect the role of motivational processes is underestimated and rarely is specifically targeted in interventions. In this article, the fundamentals of motivational processes are discussed followed by a detailed description of the Nijmegen Clinical Screening Instrument (NCSI) method. The NCSI method is a simple method that enables patient-tailored treatment and to motivate patients to adhere to treatment goals. The NCSI method consists of three distinct but highly integrated components: (1) a short instrument measuring many details of health status; (2) an intervention that helps to identify individual treatment goals and to motivate the patient to change his behaviour; (3) an automated monitoring system that simply identifies patients with new problems in health status of self-management. All components are embedded in a web-based application which enhances simplicity, efficiency, and effectiveness of the NCSI method. The NCSI method is illustrated by a case study.
Objective. To determine psychometric properties, a cut-off score for severe fatigue and normative data for the 4-item Short Fatigue Questionnaire (SFQ) derived from the multi-dimensional fatigue ...questionnaire Checklist Individual Strength (CIS).
Methods. Data of previous studies investigating the prevalence of fatigue in ten chronic conditions (n = 2985) and the general population (n = 2288) was used to determine the internal consistency (Cronbach's alpha) of the SFQ, its relation with other fatigue measures (EORTC QLQ-30 fatigue subscale and digital fatigue diary), a cut-off score for severe fatigue (ROC analysis) and to examine whether the four SFQ items truly measure the same construct. Norms were calculated for ten patient groups and the Dutch general population.
Results. Cronbach's alpha of the SFQ were excellent in almost all groups. Pearson's correlations between the SFQ and the EORTC-QLQ-C30 fatigue subscale and a fatigue diary were respectively 0.76 and 0.68. ROC analysis showed an area under the curve of 0.982 (95% CI: 0.979–0.985) and cut-off score of 18 was suggested which showed a good sensitivity (0.984) and specificity (0.826) as well as excellent values for the positive and negative prediction values within all groups using the CIS as golden standard. Factor analysis showed a one factor solution (Eigenvalue: 3.095) with factor loadings of all items on the factor being greater than 0.87.
Conclusion. The SFQ is an easy to use, reliable and valid instrument to screen for severe fatigue in clinical routine and research.
•To optimally screen for severe fatigue, a short version of the Checklist Individual Strength was proposed: the Short Fatigue Questionnaire (SFQ)•Psychometric properties of the SFQ are satisfying•A cut-off score of 18 is recommended to identify severe fatigue•Norm values are presented and can be used as reference values•The SFQ is an excellent instrument to screen for severe fatigue
In patients with interstitial lung disease (ILD) next to dyspnea, fatigue is expected to be the most prevalent symptom. Surprisingly, the prevalence of severe fatigue has been scarcely studied in ILD ...patients and limited information on its associated factors is available. This study aimed to determine the prevalence of severe fatigue in patients with idiopathic pulmonary fibrosis (IPF) or pulmonary sarcoidosis and to identify the relationship between fatigue, patient characteristics, and clinical parameters. In this cross-sectional study, fatigue (checklist individual strength-fatigue (CIS-Fat)), demographics, lung function, dyspnea (modified-Medical Research Council (mMRC)), sleepiness (Epworth Sleepiness Scale), anxiety/depression (hospital anxiety and depression scale (HADS-A/HADS-D)), catastrophizing (fatigue catastrophizing scale (FCS)), functional activity impairment (respiratory illness quality-of-life (QoL-RIQ-Activity)), and health status (EuroQol five-dimensional descriptive system (EQ-5D-5L)) were assessed in outpatients with ILD. Mean CIS-Fat scores were 34.1 (SD ± 11.2) in 59 IPF patients and 40.0 (12.3) in 58 sarcoidosis patients. Severe fatigue (SD ± ≥36 points) was present in IPF patients (47.5%) and sarcoidosis (69%). In IPF, CIS-Fat correlated strongly (ρ > 0.5;
< 0.01) with FCS, QoL-RIQ-Activity, and EQ-5D-5L-Health and moderately (0.3 < ρ < 0.5;
< 0.01) with EQ-5D-5L-Index, mMRC, and HADS-D. In sarcoidosis, CIS-Fat correlated strongly with EQ-5D-5L-Health, QoL-RIQ-Activity, EQ-5D-5L-Index, HADS-D, and mMRC and moderately with FCS and hospitalization <12 months. Severe fatigue is highly prevalent in ILD patients and is associated with dyspnea, depression, catastrophizing, functional activity impairments, and QoL.
Between 2007 and 2011, the Netherlands experienced the largest documented Q-fever outbreak to date with a total of 4108 notified acute Q-fever patients. Previous studies have indicated that Q-fever ...patients may suffer from long-lasting health effects, such as fatigue and reduced quality of life. Our study aims to determine the long-term health impact of Q-fever. It will also compare the health status of Q-fever patients with three reference groups: 1) healthy controls, 2) patients with Legionnaires' disease and 3) persons with a Q-fever infection but a-specific symptoms.
Two groups of Q-fever patients were included in a prospective cohort study. In the first group the onset of illness was in 2007-2008 and participation was at 12 and 48 months. In the second group the onset of illness was in 2010-2011 and participation was at 6 time intervals, from 3 to 24 months. The reference groups were included at only one time interval. The subjective health status, fatigue status and quality of life of patients will be assessed using two validated quality of life questionnaires.
This study is the largest prospective cohort study to date that focuses on the effects of acute Q-fever. It will determine the long-term (up to 4 years) health impact of Q-fever on patients and compare this to three different reference groups so that we can present a comprehensive assessment of disease progression over time.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
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