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Contains fulltext : 242634.pdf (Publisher’s version ) (Open Access), BACKGROUND: Fatigue is a distressing symptom in patients with COPD. Little is known about the factors that contribute to fatigue in COPD. This review summarises existing knowledge on the prevalence of fatigue, factors related to fatigue and the instruments most commonly used to assess fatigue in COPD. METHODS: Pubmed, PsycINFO, EMBASE, Cochrane and CINAHL databases were searched for studies from inception up to 7 January 2020 using the medical subject headings "COPD" and "Fatigue". Studies were reviewed in accordance with PRISMA guidelines. RESULTS: 196 studies were evaluated. The prevalence of fatigue ranged from 17-95%. Age (r=-0.23 to r=0.27), sex (r=0.11), marital status (r=-0.096), dyspnoea (r=0.13 to r=0.78), forced expiatory volume in 1 s % predicted (r=-0.55 to r=-0.076), number of exacerbations (r=0.27 to r=0.38), number of comorbidities (r=0.10), number of medications (r=0.35), anxiety (r=0.36 to r=0.61), depression (r=0.41 to r=0.66), muscle strength (r=-0.78 to r=-0.45), functional capacity (r=-0.77 to r=-0.14) and quality of life (r=0.48 to r=0.77) showed significant associations with fatigue. CONCLUSIONS: Fatigue is a prevalent symptom in patients with COPD. Multiple physical and psychological factors seem to be associated with fatigue. Future studies are needed to evaluate these underlying factors in integral analyses in samples of patients with COPD.

Contains fulltext : 239975.pdf (Publisher’s version ) (Open Access)

Radboud University, 12 januari 2021, Promotor : Assendelft, W.J.J. Co-promotores : Bischoff, E.W.M.A., Schermer, T.R.J., Vercoulen, J.H.M.M., Contains fulltext : 228315.pdf (publisher's version ) (Open Access)

Contains fulltext : 239975.pdf (Publisher’s version ) (Open Access)

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Contains fulltext : 208886.pdf (publisher's version ) (Open Access), Background: Many patients with chronic obstructive pulmonary disease (COPD) suffer from exacerbations, a worsening of their respiratory symptoms that warrants medical treatment. Exacerbations are often poorly recognized or managed by patients, leading to increased disease burden and health care costs. Objective: This study aimed to examine the effects of a smart mobile health (mHealth) tool that supports COPD patients in the self-management of exacerbations by providing predictions of early exacerbation onset and timely treatment advice without the interference of health care professionals. Methods: In a multicenter, 2-arm randomized controlled trial with 12-months follow-up, patients with COPD used the smart mHealth tool (intervention group) or a paper action plan (control group) when they experienced worsening of respiratory symptoms. For our primary outcome exacerbation-free time, expressed as weeks without exacerbation, we used an automated telephone questionnaire system to measure weekly respiratory symptoms and treatment actions. Secondary outcomes were health status, self-efficacy, self-management behavior, health care utilization, and usability. For our analyses, we used negative binomial regression, multilevel logistic regression, and generalized estimating equation regression models. Results: Of the 87 patients with COPD recruited from primary and secondary care centers, 43 were randomized to the intervention group. We found no statistically significant differences between the intervention group and the control group in exacerbation-free weeks (mean 30.6, SD 13.3 vs mean 28.0, SD 14.8 weeks, respectively; rate ratio 1.21; 95% CI 0.77-1.91) or in health status, self-efficacy, self-management behavior, and health care utilization. Patients using the mHealth tool valued it as a more supportive tool than patients using the paper action plan. Patients considered the usability of the mHealth tool as good. Conclusions: This study did not show beneficial effects o

Contains fulltext : 208497.pdf (publisher's version ) (Open Access), BACKGROUND: The objective of this study was to compare fatigue levels between subjects with and without COPD, and to investigate the relationship between fatigue, demographics, clinical features and disease severity. METHODS: A total of 1290 patients with COPD [age 65 +/- 9 years, 61% male, forced expiratory volume in 1 s (FEV1) 56 +/- 19% predicted] and 199 subjects without COPD (age 63 +/- 9 years, 51% male, FEV1 112 +/- 21% predicted) were assessed for fatigue (Checklist Individual Strength-Fatigue), demographics, clinical features and disease severity. RESULTS: Patients with COPD had a higher mean fatigue score, and a higher proportion of severe fatigue (CIS-Fatigue score 35 +/- 12 versus 21 +/- 11 points, p < 0.001; 49 versus 10%, p < 0.001). Fatigue was significantly, but poorly, associated with the degree of airflow limitation [FEV1 (% predicted) Spearman correlation coefficient = -0.08, p = 0.006]. Multiple regression indicated that 30% of the variance in fatigue was explained by the predictor variables. CONCLUSIONS: Severe fatigue is prevalent in half of the patients with COPD, and correlates poorly with the degree of airflow limitation. Future studies are needed to better understand the physical, psychological, behavioural, and systemic factors that precipitate or perpetuate fatigue in COPD.

Contains fulltext : 193465.pdf (publisher's version ) (Open Access), Chronic obstructive pulmonary disease (COPD) has extensively been reported as a complex disease affecting patients' health beyond the lungs with a variety of intra- and extrapulmonary components and considerable variability between individuals. This review discusses the assessment of this complexity and underlines the importance of transdisciplinary management programmes addressing the physical, emotional and social health of the individual patient.COPD management is challenging and requires advanced, sophisticated strategies meeting the patient's individual needs. Due to the heterogeneity and complexity of the disease leading to non-linear and consequently poorly predictable treatment responses, multidimensional patient profiling is crucial to identify the right COPD patient for the right treatment. Current methods are often restricted to general, well-known and commonly used assessments neglecting potentially relevant (interactions between) individual, unique "traits" to finally ensure personalised treatment. Dynamic, personalised and holistic approaches are needed to tackle this multifaceted disease and to ensure personalised medicine and value-based healthcare.

Contains fulltext : 200107.pdf (Publisher’s version ) (Open Access), The 2018 update of the Global Strategy for Asthma Management and Prevention does not mention fatigue-related symptoms. Nevertheless, patients with asthma frequently report tiredness, lack of energy, and daytime sleepiness. Quantitative research regarding the prevalence of fatigue in asthmatic patients is lacking. This retrospective cross-sectional study of outpatients with asthma upon referral to a chest physician assessed fatigue (Checklist Individual Strength-Fatigue (CIS-Fatigue)), lung function (spirometry), asthma control (Asthma Control Questionnaire (ACQ)), dyspnea (Medical Research Council (MRC) scale), exercise capacity (six-minute walk test (6MWT)), and asthma-related Quality-of-Life (QoL), Asthma Quality of Life Questionnaire (AQLQ) during a comprehensive health-status assessment. In total, 733 asthmatic patients were eligible and analyzed (47.4 +/- 16.3 years, 41.1% male). Severe fatigue (CIS-Fatigue >/= 36 points) was detected in 62.6% of patients. Fatigue was not related to airflow limitation (FEV1, rho = -0.083); was related moderately to ACQ (rho = 0.455), AQLQ (rho = -0.554), and MRC (rho = 0.435; all p-values < 0.001); and was related weakly to 6MWT (rho = -0.243, p < 0.001). In stepwise multiple regression analysis, 28.9% of variance in fatigue was explained by ACQ (21.0%), MRC (6.5%), and age (1.4%). As for AQLQ, 42.2% of variance was explained by fatigue (29.8%), MRC (8.6%), exacerbation rate (2.6%), and age (1.2%). Severe fatigue is highly prevalent in asthmatic patients; it is an important determinant of disease-specific QoL and a crucial yet ignored patient-related outcome in patients with asthma.

Contains fulltext : 174740.pdf (publisher's version ) (Closed access)

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Contains fulltext : 175761.pdf (Publisher’s version ) (Open Access), PURPOSE: The purposes of the study are to identify clinical phenotypes that reflect the level of adaptation to the disease and to examine whether these clinical phenotypes respond differently to treatment as usual (TAU) and pulmonary rehabilitation (PR), the latter with its strong emphasis on improving adaptation. METHODS: Clusters were identified by a cluster analysis using data on many subdomains of the four domains of health status (HS) (physiological functioning, functional impairment, symptoms and quality of life) in 160 outpatients with chronic obstructive pulmonary disease (COPD) receiving TAU. By discriminant analysis in the TAU sample, all 459 PR patients could be assigned to one of the identified clusters. The effect of TAU and PR on HS was examined with paired t tests. RESULTS: Three distinct phenotypes were identified in the TAU sample. Two types were labelled adapted: phenotype 1 (moderate COPD-low impact on HS, n = 53) and phenotype 3 (severe COPD-moderate impact on HS, n = 73). One type was labelled non-adapted: phenotype 2 (moderate COPD-high impact on HS, n = 34). After 1-year TAU, the integral health status of all patients did not improve in any subdomain. In contrast, at the end of PR, significant improvements in HS were found in all three phenotypes especially the non-adapted. CONCLUSIONS: Different phenotypes exist in COPD that are based on behavioural aspects (i.e. the level of adaptation to the disease). Non-adapted patient responds better to treatments with a strong emphasis on improving adaptation by learning the patient better self-management skills. Knowing to which clinical phenotype a patient belongs helps to optimize patient-tailored treatment.

Contains fulltext : 170329.pdf (publisher's version ) (Open Access), BACKGROUND/OBJECTIVES: Chronic obstructive pulmonary disease (COPD) not only affects patients but also their partners. Gender-related differences in patients with COPD are known, for instance regarding symptoms and quality of life. Yet, research regarding gender differences in partners of patients with COPD has been conducted to a lesser extent, and most research focused on female partners. We aimed to investigate differences between male and female partners of patients with COPD regarding their own characteristics and their perceptions of patients' characteristics. DESIGN: Cross-sectional study. SETTING: Four hospitals in the Netherlands. PARTICIPANTS: One hundred and eighty-eight patient-partner couples were included in this cross-sectional study. MEASUREMENTS: General and clinical characteristics, health status, care dependency, symptoms of anxiety and depression, social support, caregiver burden, and coping styles were assessed during a home visit. RESULTS: Female partners had more symptoms of anxiety and a worse health status than male partners. Social support and caregiver burden were comparable, but coping styles differed between male and female partners. Female partners thought that male patients were less care dependent and had more symptoms of depression, while these gender differences did not exist in patients themselves. CONCLUSION: Health care providers should pay attention to the needs of all partners of patients with COPD, but female partners in particular. Obtaining an extensive overview of the patient-partner couple, including coping styles, health status, symptoms of anxiety, and caregiver burden, is necessary to be able to support the couple as effectively as possible.

Item does not contain fulltext, AIMS: The aim of the study was to assess long-term work participation of Q-fever patients and patients with Legionnaires' disease, and to identify which factors are associated with a reduced work participation in Q-fever patients. METHODS: Q-fever patients participated at four time points until 12 months after onset of illness, patients with Legionnaires' disease only at 12 months. Data were self-reported using questionnaires on the amount of hours that patients worked, and on socio-demographic, medical, psychosocial and lifestyle aspects. RESULTS: Our study included 336 Q-fever patients and 190 patients with Legionnaires' disease. There was a decrease in the proportion of Q-fever patients with reduced work participation over time, from 45% at 3 months to 19% at 12 months (versus 15% of patients with Legionnaires' disease at 12 months). Factors associated with reduced work participation of Q-fever patients in a multivariate model were having symptoms, a higher level of sorrow, being a former smoker (compared to never smoking), not consuming any alcohol and following additional treatment for the long-term health effects of Q-fever. CONCLUSIONS: Despite an increase in work participation of Q-fever patients over time, almost one in five Q-fever patients and one in six patients with Legionnaires' disease still suffer from reduced work participation at 12 months. Occupational and insurance physicians need to be aware of the long-term impact of these diseases on work participation.

Item does not contain fulltext, OBJECTIVES: During the largest Q-fever outbreak ever reported, a cohort study was established to assess the health status of Q-fever patients over a 24-month period and to identify factors associated with health status. METHODS: Laboratory-confirmed Q-fever patients participated at six time points after onset of illness. Scores on twelve subdomains from two health status instruments were calculated for each time point to determine progression and compare to reference groups. RESULTS: The study included 336 Q-fever patients. There is a significant linear improvement over time in nine of the twelve health status subdomains. For example, the proportion of patients with severe fatigue improved from 73.0% at three months to 60.0% at twelve months and 37.0% at twenty-four months, but this was still high compared to a healthy reference group (2.5%). For the three most severely affected subdomains -'Fatigue', 'General Quality of Life' and 'Role Physical'- the baseline characteristics significantly associated with a long-term reduced health status were being female, being a young adult and having pre-existing health problems. CONCLUSIONS: Despite a significant linear improvement over time in nine of the twelve health status subdomains, more than one out of three patients still suffered from a reduced health status at 24 months.

Radboud Universiteit Nijmegen, 27 januari 2015, Promotores : Prins, J.B., Dekhuijzen, P.N.R. Co-promotores : Vercoulen, J.H.M.M., Molema, J., Heijdra, Y.F., Contains fulltext : 134492.pdf (publisher's version ) (Open Access)

Contains fulltext : 139047.pdf (publisher's version ) (Open Access), INTRODUCTION: Chronic obstructive pulmonary disease (COPD) represents an important public health challenge. Patients are confronted with limitations during activities of daily living (ADLs). Resident loved ones of patients with COPD may be uniquely positioned to witness these limitations. COPD may have an impact on not only the patients' life, but also on the lives of the resident loved ones. Furthermore, COPD exacerbation-related hospital admissions often occur in patients with COPD. However, whether and to what extent these admissions influence resident loved ones' burden and health status remains currently unknown. Therefore, the primary objectives of this study are to investigate the differences between patients with COPD and resident loved ones' perceptions of patients' health status and problematic ADLs and to study prospectively the effects of a COPD exacerbation on resident loved ones' perceptions of patients' health status and problematic ADLs. METHODS AND ANALYSIS: An observational, longitudinal study will be performed in 192 patients with COPD and their 192 resident loved ones. Primary outcomes are daily functioning, ADL, disease-specific health status, generic health status and dyspnoea. These will be assessed during home visits at baseline and after 12 months. Additional home visits will be performed when a COPD exacerbation-related hospital admission occurs during the 12-month follow-up period. ETHICS AND DISSEMINATION: This protocol was approved by the Medical Ethics Committee of the Catharina Hospital Eindhoven, the Netherlands (NL42721.060.12/M12-1280) and is registered in the Dutch Trial Register (NTR3941).

Item does not contain fulltext, BACKGROUND: Patients with severe asthma experience problems in different areas of their health status. Identification of these areas will provide insight in the patients needs and perhaps what determines the burden of disease. The Nijmegen Clinical Screening Instrument (NCSI) was recently developed for use in clinical practice in patients with COPD and provides a detailed picture of the patients' physiological functioning, symptoms, functional impairment, and Quality of Life. Main purpose of this study is to evaluate the use of the NCSI as compared to the Asthma Control Questionnaire (ACQ) and Asthma Quality of Life Questionnaire (AQLQ) in patients with severe asthma. METHODS: The NCSI, AQLQ, and ACQ were measured in 167 patients with severe asthma. Pearson correlations were calculated between NCSI sub-domains and the AQLQ domains and the ACQ. RESULTS: The NCSI measures more aspects of health status as compared to the ACQ and AQLQ in patients with severe asthma. Beside symptoms, subjective impairment, and emotions the NCSI also measures general Quality of Life, health related Quality of Life, satisfaction with relations, fatigue, and behavioural impairment. On all NCSI sub-domains proportions of patients with normal, mild, and severe problems were found. Heterogeneity was found on the number and on the combination of sub-domains on which patients reported severe problems. CONCLUSIONS: The NCSI provides a more detailed picture of the individual patient with severe asthma than the ACQ and AQLQ. The use of the NCSI might allow quick identification of the problem areas and possible factors that impair health status.

Item does not contain fulltext, BACKGROUND: We assessed and compared the long-term health status of Q-fever patients and patients with Legionnaires' disease. METHODS: Q-fever patients and patients with Legionnaires' disease fulfilling the Dutch notification criteria filled out a questionnaire at one year after onset of illness. The proportion of patients with an abnormal score was calculated for 12 health status subdomains and mean scores for the most relevant subdomains were compared between the patient groups. RESULTS: We included 309 Q-fever patients and 190 patients with Legionnaires' disease in the study. A large proportion of the two patient groups was negatively affected on many of the subdomains, especially 'Fatigue', 'General Quality of Life' and 'Role Physical'. We assessed health status of the patient groups using a multivariate regression analysis and found no significant difference for 'Fatigue' and 'General Quality of Life'. Only for the subdomain 'Role Physical', Q-fever patients scored significantly worse compared to patients with Legionnaires' disease. CONCLUSIONS: Many Q-fever patients and patients with Legionnaires' disease suffer from a severely affected health status on one or more subdomains at one year after onset of illness. We recommend additional support for a large proportion of both patient groups during the first year after onset of illness.

Radboud Universiteit Nijmegen, 02 juli 2013, Promotor : Dekhuijzen, P.N.R. Co-promotores : Vercoulen, J.H.M.M., Heijdra, Y.F., Contains fulltext : 112257.pdf (publisher's version ) (Open Access)

Contains fulltext : 117978.pdf (publisher's version ) (Open Access), BACKGROUND: The aim of the study was to assess the use of the Nijmegen Clinical Screening Instrument (NCSI) and Short Form 36 (SF-36) in providing a detailed assessment of health status of Q-fever patients and to evaluate which subdomains within the NCSI and SF-36 measure unique aspects of health status. FINDINGS: Patients received a study questionnaire, which contained the NCSI and SF-36. Pearson correlation coefficients between subdomains of the instruments were calculated. The response rate was 94% (309 out of 330 eligible patients). Intercorrelations between subdomains of the NCSI were generally lower than of the SF-36. Four subdomains of the NCSI showed conceptual similarity (Pearson's r >/= .70) with one or more subdomains of the SF-36 and vice versa. Subdomains that showed no conceptual similarity were NCSI Subjective Pulmonary Symptoms, Subjective Impairment, Dyspnoea Emotions and Satisfaction Relations, and SF-36 Social functioning, Bodily Pain, Role Physical and Role Emotional. CONCLUSIONS: Our results show that either the NCSI or SF-36 can be used to measure health status in Q-fever patients. When the aim is to obtain a detailed overview of the patients' health, a combination of the two instruments, consisting of the complete NCSI and the four unique subdomains of the SF-36, is preferred.

Item does not contain fulltext, BACKGROUND: Physical activity and health status deteriorate early in the course of chronic obstructive pulmonary disease (COPD). This can only partially be explained by the degree of airflow limitation. Changes in (resting and dynamic) lung volumes are known to be associated with functional impairments and thus might influence physical activity level. The aim of the present cross-sectional study was to explore the contribution of dynamic hyperinflation during daily life activities (ADL) in the decline in physical activity. METHODS: Airflow limitation and inspiratory capacity at rest to total lung capacity ratio (IC/TLC) as a measure of resting hyperinflation were measured in 59 patients with COPD (GOLD I-IV). Mean daily physical activity was assessed with a tri-axial accelerometer. Measurements of dynamic hyperinflation during ADL (DeltaIC and inspiratory reserve volume at end ADL) were performed at patients' home using a portable breath-by-breath system. RESULTS: Multiple regression analysis showed that resting as well as ADL-induced dynamic hyperinflation independently contributed to decreased daily physical activity, together explaining 45.8% of the variance in physical activity. In contrast to hyperinflation, the severity of airflow limitation (FEV1) appeared to have no unique part in explaining how physically (in-) active patients were. CONCLUSIONS: The presence of resting hyperinflation and occurrence of dynamic hyperinflation during ADL contribute to reduced physical activity levels in patients with COPD, independently of the degree of airflow limitation.

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Item does not contain fulltext, Background: Exacerbations of chronic obstructive pulmonary disease (COPD) are held responsible for a decline in health status (HS). This may not apply equally to all exacerbations, because different definitions are required for quite different illnesses. Selection of definitions and the sensitivity of the HS instrument may affect results regarding the impact of exacerbations. Sensitivity of a new HS instrument, which covers different and more aspects, has not yet been tested, with respect to exacerbations. Objectives: Confirmation of the negative HS effect of exacerbations by using a highly differentiated instrument, and to evaluate which aspects of HS are affected most. Methods: One hundred and sixty-eight ambulatory patients with COPD were evaluated prospectively with regard to a wide range of HS aspects, at the beginning and end of a 1-year follow-up. Recording of symptom changes and treatment on monthly diary cards resulted in the identification of event-based exacerbations. HS was assessed via a newly validated instrument integrating both physiological and non-physiological sub-domains. Parametric correlations were calculated between exacerbation frequency and HS scores at the end of the study. Partial corre-lations were then explored using HS scores at baseline to correct for prior HS levels. Results: Correlations between -exacerbation frequency and HS sub-domains were found to be frequent, predominantly in non-physiological sub--domains. After correction for HS scores at baseline, only 2 sub-domains (belonging to the main domain 'Complaints') remained significantly but weakly correlated. Conclusion: Exacerbation frequency and HS show weak correlations after a year, but most of these disappear after correction for prior HS levels. In such exacerbations, aggravated HS probably takes much longer to manifest itself.

Radboud Universiteit Nijmegen, 9 januari 2013, Promotor : Weel, C. van Co-promotores : Schermer, T.R.J., Vercoulen, J.H.M.M., Bourbeau, J., Contains fulltext : 101019.pdf (publisher's version ) (Open Access)

Contains fulltext : 109847.pdf (publisher's version ) (Open Access), BACKGROUND: 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. METHODS/DESIGN: 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. DISCUSSION: 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.

1 mei 2012, Item does not contain fulltext, Current tools for recording chronic obstructive pulmonary disease (COPD) exacerbations are limited and often lack validity testing. We assessed the validity of an automated telephonic exacerbation assessment system (TEXAS) and compared its outcomes with existing tools. Over 12 months, 86 COPD patients (22.1% females; mean age 66.5 yrs; mean post-bronchodilator forced expiratory volume in 1 s 53.4% predicted) were called once every 2 weeks by TEXAS to record changes in respiratory symptoms, unscheduled healthcare utilisation and use of respiratory medication. The responses to TEXAS were validated against exacerbation-related information collected by observations made by trained research assistants during home visits. No care assistance was provided in any way. Diagnostic test characteristics were estimated using commonly used definitions of exacerbation. Detection rates, compliance and patient preference were assessed, and compared with paper diary cards and medical record review. A total of 1,824 successful calls were recorded, of which 292 were verified by home visits (median four calls per patient, interquartile range three to five calls per patient). Independent of the exacerbation definition used, validity was high, with sensitivities and specificities between 66% and 98%. Detection rates and compliance differed extensively between the different tools, but were highest with TEXAS. Patient preference did not differ. TEXAS is a valid tool to assess COPD exacerbation rates in prospective clinical studies. Using different tools to record exacerbations strongly affects exacerbation occurrence rates.

1 juni 2012, Item does not contain fulltext, INTRODUCTION: The cardiopulmonary exercise test (CPET) and the 6-minute walk test (6MWT) are used to prescribe the appropriate training load for cycling and walking exercise in patients with chronic obstructive pulmonary disease (COPD). The primary aims were: (i) to compare estimated peak work rate (Wpeak(estimated)) derived from six existing Wpeak regression equations with actual peak work rate (Wpeak(actual)); and (ii) to derive a new Wpeak regression equation using six-minute walk distance (6MWD) and conventional outcome measures in COPD patients. METHODS: In 2906 patients with COPD, existing Wpeak regression equations were used to estimate Wpeak using 6MWD and a new equation was derived after a stepwise multiple regression analysis. RESULTS: The 6 existing Wpeak regression equations were inaccurate to predict Wpeak(actual) in 82% of the COPD patients. The new Wpeak regression equation differed less between Wpeak(estimated) and Wpeak(actual) compared to existing models. Still, in 74% of COPD patients Wpeak(estimated) and Wpeak(actual) differed more than (+/-) 5 watts. CONCLUSION: In conclusion, estimating peak work load from 6MWD in COPD is inaccurate. We recommend assessment of Wpeak using CPET during pre-rehabilitation assessment in addition to 6MWT.

Item does not contain fulltext, 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.

Item does not contain fulltext, In the Dutch Standard of Care for chronic obstructive pulmonary disease (COPD) the patient, not the illness, is now central. - Additionally, treatment is no longer exclusively guided by the degree of airway obstruction but by the burden of disease (also called 'integral health status').- Consequently, COPD care will be more intensive and more complex.- The Nijmegen Clinical Screening Instrument (NCSI) method offers a guide for the patient and the caregiver to help execute the standard of care effectively and efficiently.- Using this method, the burden of disease is assessed in detail.- An integral intervention helps in formulating treatment goals (patient-tailored treatment), and in motivating patients to adhere to these treatment goals.- A special condensed version of the NCSI is suitable for monitoring the patient.- The method is web-based, which facilitates the assessment and monitoring of the patient.

Contains fulltext : 96434.pdf (postprint version ) (Open Access), BACKGROUND: In the Netherlands, from 2007 to 2009, 3,522 Q-fever cases were notified from three outbreaks. These are the largest documented outbreaks in the world. Previous studies suggest that symptoms can persist for a long period of time, resulting in a reduced quality of life (QoL). The aim of this study was to qualify and quantify the health status of Q-fever patients after long-term follow-up. METHODS: 870 Q-fever patients of the 2007 and 2008 outbreaks were mailed a questionnaire 12 to 26 months after the onset of illness. We assessed demographic data and measured health status with the Nijmegen Clinical Screening Instrument (NCSI). The NCSI consists of three main domains of functional impairment, symptoms and QoL that are divided into eight sub-domains. The NCSI scores of Q-fever patients older than 50 years (N=277) were compared with patients younger than 50 years (N=238) and with norm data from healthy individuals (N=65) and patients with chronic obstructive pulmonary disease (N=128). RESULTS: The response rate was 65.7%. After applying exclusion criteria 515 Q-fever patients were included in this study. The long-term health status of two thirds of Q-fever patients (both younger and older than 50 years) was severely affected for at least one sub-domain. Patients scores were most severely affected on the sub-domains general QoL (44.9%) and fatigue (43.5%). Hospitalisation in the acute phase was significantly related to long-term behavioural impairment (OR 2.8, CI 1.5-5.1), poor health related QoL (OR 2.3,CI 1.5-4.0) and subjective symptoms (OR 1.9, CI 1.1-3.6). Lung or heart disease, depression and arthritis significantly affected the long-term health status of Q-fever patients. CONCLUSIONS: Q-fever patients presented 12 to 26 months after the onset of illness severe -clinically relevant- subjective symptoms, functional impairment and impaired QoL. All measured sub-domains of the health status were impaired. Hospitalisation and co-morbidity were predictors

Item does not contain fulltext, OBJECTIVE: To examine the difference between patients with normal and patients with abnormal fatigue on aspects of health status, and investigate the natural course of fatigue in patients with Chronic Obstructive Pulmonary Disease (COPD). METHODS: Fatigue, physiological functioning, functional impairment, symptoms, and Quality of Life (QoL) were measured in 168 patients with COPD, and longitudinal data on fatigue of 77 patients were collected. RESULTS: Fifty percent of patients had abnormal fatigue. Patients with abnormal fatigue reported significantly more problems on the sub-domains of functional impairment (except actual physical activity), symptoms, and QoL as compared to patients with normal fatigue. With respect to physiological functioning patients with normal fatigue scores had better exercise capacity. Four years later the percentage of patients with abnormal fatigue was increased to 64%. In 1/3 of the patients an increase of more than the minimal clinically important difference was found. CONCLUSION: Many COPD patients suffer from abnormal fatigue. Patients with abnormal fatigue have more limitations on many aspects of health status, especially on symptoms, functional impairment, and QoL. PRACTICE IMPLICATIONS: Fatigue should be evaluated in usual care with a questionnaire that corrects for normal fatigue in order to tailor treatment to patients' need.

Contains fulltext : 97967.pdf (publisher's version ) (Open Access), BACKGROUND: The Cystic Fibrosis Questionnaire (CFQ) is widely used in research as an instrument to measure quality of life in patients with cystic fibrosis (CF). In routine patient care however, measuring quality of life is still not implemented in guidelines. One of the reasons might be the lack of consensus on how to interpret CFQ scores of an individual patient, because appropriate reference data are lacking. The question which scores reflect normal functioning and which scores reflect clinically relevant problems is still unanswered. Moreover, there is no knowledge about how healthy children and adolescents report on their quality of life (on the CFQ). With regard to quality of life the effect of normal development should be taken into account, especially in childhood and adolescence. Therefore, it is important to gain more knowledge about how healthy children and adolescents report on their quality of life and if there are any difference in a healthy populations based on age or gender. Without these data we cannot adequately interpret the CFQ as a tool in clinical care to provide patient-tailored care. Therefore this study collected data of the CFQ in healthy children and adolescents with the aim to refer health status of CF youngsters to that of healthy peers. METHODS: The CFQ was completed by 478 healthy Dutch children and adolescents (aged 6-20) in a cross-sectional study. RESULTS: The majority of healthy children (over 65%) did not reach maximum scores on most domains of the CFQ. Median CFQ-scores of healthy children and adolescents ranged from 67 to 100 (on a scale of 0-100) on the different CFQ-domains. Significant differences in quality of life exist among healthy children and adolescents, and these depend on age and gender. CONCLUSIONS: Reference data of quality of life scores from a healthy population are essential for adequate interpretation of quality of life in young patients with CF. Clinicians should be aware that the perception of health-related

1 december 2010, Contains fulltext : 88353.pdf (publisher's version ) (Closed access), 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 approximately 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.

Contains fulltext : 87583.pdf (publisher's version ) (Closed access), 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.

Contains fulltext : 88421.pdf (publisher's version ) (Open Access), BACKGROUND: Improving patients' health status is one of the major goals in COPD treatment. Questionnaires could facilitate the guidance of patient-tailored disease management by exploring which aspects of health status are problematic, and which aspects are not. Health status consists of four main domains (physiological functioning, symptoms, functional impairment, and quality of life), and at least sixteen sub-domains. A prerequisite for patient-tailored treatment is a detailed assessment of all these sub-domains. Most questionnaires developed to measure health status consist of one or a few subscales and measure merely some aspects of health status. The question then rises which aspects of health status are measured by these instruments, and which aspects are not covered. As it is one of the most frequently used questionnaires in COPD, we evaluated which aspects of health status are measured and which aspects are not measured by the St George's Respiratory Questionnaire (SGRQ). METHODS: One hundred and forty-six outpatients with COPD participated. Correlations were calculated between the three sections of the SGRQ and ten sub-domains of the Nijmegen Integral Assessment Framework, covering Symptoms, Functional Impairment, and Quality of Life. As the SGRQ was not expected to measure physiological functioning, we did not include this main domain in the statistical analyses. Pearson's r > or = 0.70 was used as criterion for conceptual similarity. RESULTS: The SGRQ sections Symptoms and Total showed conceptual similarity with the sub-domain Subjective Symptoms (main domain Symptoms). The sections Activity, Impacts and Total were conceptual similar to Subjective Impairment (main domain Functional Impairment). The SGRQ sections were not conceptual similar to other sub-domains of Symptoms, Functional Impairment, nor to any sub-domain of Quality of Life. CONCLUSIONS: The SGRQ could facilitate the guidance of disease management in COPD only partially. The SGRQ is appropriat

Contains fulltext : 79857.pdf (publisher's version ) (Open Access), The Global Initiative for Chronic Obstructive Lung Disease (GOLD) serves as a guide to treat and manage different severity classes of patients with COPD. It was suggested that the five categories of FEV(1) % predicted (GOLD 0-4), can be applied for selecting different therapeutic approaches. However, validation of these selective properties is very poor. To determine the relevance of the GOLD staging system for estimating the severity of clinical problems, GOLD 2 (n=70) and GOLD 3 (n=65) patients were drawn from a prospective cohort of patients with COPD and evaluated crosssectionally by a newly developed Nijmegen Integral Assessment Framework (NIAF). The NIAF is a detailed assessment of a wide range of aspects of health status (HS). Significant, though small, differences were found in Static Lung Volumes, Exercise Capacity, Subjective Pulmonary Complaints, Subjective Impairment, and Health-Related QoL, besides Airflow of course. Moreover, overlap between scores of these five HS sub-domains was substantial, indicating small clinical relevance for discernment. No significant differences were found in nine other aspects of HS. It is concluded that GOLD stages do not discriminate in any aspect of HS other than airflow obstruction, and therefore do not help the clinician in deciding which treatment modalities are appropriate.

Contains fulltext : 80284.pdf (publisher's version ) (Closed access), PURPOSE: To compose a battery of instruments that provides a detailed assessment of health status (HS) in COPD but that is applicable and clinically meaningful in routine care. METHODS: In a previous study, we developed the Nijmegen Integral Assessment Framework (NIAF) that organizes existing tests and instruments by the sub-domains of HS they measure. Based on clinical and statistical criteria (correlation coefficients and Cronbach alpha's) we selected for each sub-domain instruments from the NIAF. A COPD-study group was used to determine c-scores, and two control groups were used to determine the score ranges indicating normal functioning versus clinically relevant problems for each sub-domain. Existing questionnaire completion software (TestOrganiser) was adapted to enhance clinical applicability. RESULTS: The NCSI measures eleven sub-domains of physiological functioning, symptoms, functional impairment, and quality of life. The TestOrganiser automatically processes the data and produces the graphical PatientProfileChart, which helps to easily interpret results. This envisages the problem areas and discrepancies between the different sub-domains. CONCLUSION: The NCSI provides a valid and detailed picture of a patient's HS within 15-25 min. In combination with the PatientProfileChart, the NCSI can be used perfectly in routine care as screening instrument and as a guide in patient-tailored treatment.

Contains fulltext : 69722.pdf (publisher's version ) (Closed access), BACKGROUND: To date, many health status instruments exist, but the validity of these instruments is questionable. This is caused by the fact that health status is poorly defined. Purpose: To develop a validated framework that improves conceptual insight into health status and its domains. METHODS: Based on theoretical and clinical considerations, we defined the domains of health status into concrete sub-domains by formulating conceptual models. Guided by these conceptual models, for each sub-domain, existing instruments were selected. We validated the conceptual models in the data of 168 COPD patients. Using factor analysis, underlying concepts in the data were identified. RESULTS: The resulting framework included physiological functioning, complaints, functional impairment, and quality of life. These main domains were shown to be subdivided into 15 sub-domains. CONCLUSIONS: The present study shows that health status consists of conceptually distinct sub-domains. Integral assessment of health status thus entails measuring all sub-domains. Existing instruments measure only few sub-domains. Integral assessment of health status thus requires the combination of different instruments. The present framework of health status can help in composing such a battery of instruments. Patient profiles obtained by the framework are essential in individualizing treatment.

Contains fulltext : 69064.pdf (publisher's version ) (Closed access)