Search

Lonneke M Boer,1 Maarten van der Heijden,2 Nathalie ME van Kuijk,1 Peter JF Lucas,2 Jan H Vercoulen,3,4 Willem JJ Assendelft,1 Erik W Bischoff,1 Tjard R Schermer1,5 1Department of Primary and Community Care, Radboud university medical center, Radboud Institute for Health Sciences, Nijmegen, the Netherlands; 2Department of Computing Sciences, Radboud University, Nijmegen, the Netherlands; 3Department of Medical Psychology, Radboud university medical center, Radboud Institute for Health Sciences, Nijmegen, the Netherlands; 4Department of Pulmonary Diseases, Radboud university medical center, Radboud Institute for Health Sciences, Nijmegen, the Netherlands; 5Netherlands Institute for Health Services Research (NIVEL), Utrecht, the Netherlands Background: To support patients with COPD in their self-management of symptom worsening, we developed Adaptive Computerized COPD Exacerbation Self-management Support (ACCESS), an innovative software application that provides automated treatment advice without the interference of a health care professional. Exacerbation detection is based on 12 symptom-related yes-or-no questions and the measurement of peripheral capillary oxygen saturation (SpO2), forced expiratory volume in one second (FEV1), and body temperature. Automated treatment advice is based on a decision model built by clinical expert panel opinion and Bayesian network modeling. The current paper describes the validity of ACCESS. Methods: We performed secondary analyses on data from a 3-month prospective observational study in which patients with COPD registered respiratory symptoms daily on diary cards and measured SpO2, FEV1, and body temperature. We examined the validity of the most important treatment advice of ACCESS, ie, to contact the health care professional, against symptom- and event-based exacerbations. Results: Fifty-four patients completed 2,928 diary cards. One or more of the different pieces of ACCESS advice were provided in 71.7% of all cases. We identified 115 symptom-based exacerbations. Cross-tabulation showed a sensitivity of 97.4% (95% CI 92.0–99.3), specificity of 65.6% (95% CI 63.5–67.6), and positive and negative predictive value of 13.4% (95% CI 11.2–15.9) and 99.8% (95% CI 99.3–99.9), respectively, for ACCESS’ advice to contact a health care professional in case of an exacerbation. Conclusion: In many cases (71.7%), ACCESS gave at least one self-management advice to lower symptom burden, showing that ACCES provides self-management support for both day-to-day symptom variations and exacerbations. High sensitivity shows that if there is an exacerbation, ACCESS will advise patients to contact a health care professional. The high negative predictive value leads us to conclude that when ACCES does not provide the advice to contact a health care professional, the risk of an exacerbation is very low. Thus, ACCESS can safely be used in patients with COPD to support self-management in case of an exacerbation. Keywords: COPD, exacerbations, telehealth, software application, treatment advice, self-management, health, mobile health, automated device, diagnostic accuracy

Nienke Nakken,1 Daisy JA Janssen,1,2 Monique van Vliet,3 Geeuwke J de Vries,4 Giny AL Clappers-Gielen,5 Arent Jan Michels,6 Jean WM Muris,7 Jan H Vercoulen,8 Emiel FM Wouters,1,9 Martijn A Spruit1 1Department of Research and Education, CIRO, Horn, 2Centre of Expertise for Palliative Care, Maastricht University Medical Centre+ (MUMC+), Maastricht, 3Department of Respiratory Medicine, Zuyderland, Heerlen, 4Department of Respiratory Medicine, Zuyderland, Sittard-Geleen, 5Department of Respiratory Medicine, Elkerliek Hospital, Helmond, 6Department of Respiratory Medicine, St Anna Hospital, Geldrop, 7Department of Family Medicine, CAPHRI School of Public Health and Primary Care, Maastricht University, Maastricht, 8Department of Medical Psychology and Department of Pulmonary Diseases, Radboud University Nijmegen Medical Centre, Nijmegen, 9Department of Respiratory Medicine, Maastricht University Medical Centre+ (MUMC+), Maastricht, the Netherlands 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. Keywords: COPD, family caregiving, gender, partners

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. [ABSTRACT FROM AUTHOR]

To reduce the burden of chronic diseases on society and individuals, European countries implemented chronic Disease Management Programs (DMPs) that focus on the management of a single chronic disease. However, due to the fact that the scientific evidence that DMPs reduce the burden of chronic diseases is not convincing, patients with multimorbidity may receive overlapping or conflicting treatment advice, and a single disease approach may be conflicting with the core competencies of primary care. In addition, in the Netherlands, care is shifting from DMPs to person-centred integrated care (PC-IC) approaches. This paper describes a mixed-method development of a PC-IC approach for the management of patients with one or more chronic diseases in Dutch primary care, executed from March 2019 to July 2020. In Phase 1, we conducted a scoping review and document analysis to identify key elements to construct a conceptual model for delivering PC-IC care. In Phase 2, national experts on Diabetes Mellitus type 2, cardiovascular diseases, and chronic obstructive pulmonary disease and local healthcare providers (HCP) commented on the conceptual model using online qualitative surveys. In Phase 3, patients with chronic conditions commented on the conceptual model in individual interviews, and in Phase 4 the conceptual model was presented to the local primary care cooperatives and finalized after processing their comments. Based on the scientific literature, current practice guidelines, and input from a variety of stakeholders, we developed a holistic, person-centred, integrated approach for the management of patients with (multiple) chronic diseases in primary care. Future evaluation of the PC-IC approach will show if this approach leads to more favourable outcomes and should replace the current single-disease approach in the management of chronic conditions and multimorbidity in Dutch primary care.

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., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Peters, Antons, Koolen, van Helvoort, van Hees, van den Borst, Spruit, Vercoulen and van ‘t Hul.)

(1) To evaluate the prevalence of severe and chronic fatigue in subjects with and without chronic disease; (2) to assess to which extent multi-morbidity contributes to severe and chronic fatigue; and (3) to identify predisposing and associated factors for severe and chronic fatigue and whether these are disease-specific, trans-diagnostic, or generic. The Dutch Lifelines cohort was used, including 78,363 subjects with (n = 31,039, 53 ± 12 years, 33% male) and without (n = 47,324, 48 ± 12 years, 46% male) ≥ 1 of 23 chronic diseases. Fatigue was assessed with the Checklist Individual Strength-Fatigue. Compared to participants without a chronic disease, a higher proportion of participants with ≥ 1 chronic disease were severely (23% versus 15%, p < 0.001) and chronically (17% versus 10%, p < 0.001) fatigued. The odds of having severe fatigue (OR [95% CI]) increased from 1.6 [1.5-1.7] with one chronic disease to 5.5 [4.5-6.7] with four chronic diseases; for chronic fatigue from 1.5 [1.5-1.6] to 4.9 [3.9-6.1]. Multiple trans-diagnostic predisposing and associated factors of fatigue were found, explaining 26% of variance in fatigue in chronic disease. Severe and chronic fatigue are highly prevalent in chronic diseases. Multi-morbidity increases the odds of having severe and chronic fatigue. Several trans-diagnostic factors were associated with fatigue, providing a rationale for a trans-diagnostic approach., (© 2021. The Author(s).)

Background: Fatigue is highly prevalent in patients with idiopathic pulmonary fibrosis (IPF) or sarcoidosis. However, the difference in fatigue perceptions for these patients is unknown and this may be important to better understand what fatigue means to the individual patient., Methods: This cross-sectional quantitative study aims to determine the different perceptions of fatigue as 'frustrating', 'exhausting', 'pleasant', 'frightening' using the Fatigue Quality List and to assess determinants related to these perceptions of fatigue. Beside the fatigue quality connotations, demographics, lung function, fatigue severity (Checklist Individual Strength subscale Fatigue), dyspnea (modified-Medical Research Council), fatigue catastrophizing (Fatigue Catastrophizing Scale), anxiety/depression (Hospital Anxiety and Depression Scale) and general health status (EuroQoL 5-dimension 5-level) were assessed., Results: Mean frequency score of fatigue-related perceptions in patients with IPF was 3.4 points and in patients with sarcoidosis 4.0 points. Severely fatigued patients with IPF reported their fatigue less 'pleasant' significantly more often than patients without severe fatigue. Fatigue severity, dyspnea, catastrophizing and general health were significantly correlated with the negative connotation categories of the Fatigue Quality List in patients with IPF. Severely fatigued sarcoidosis patients reported their fatigue perceptions significantly more often as 'frustrating', 'exhausting', 'frightening' and less 'pleasant' than patients without severe fatigue. Moreover, in patients with sarcoidosis fatigue severity, dyspnea, catastrophizing and depression were significantly associated with all four categories of the Fatigue Quality List that describe the experienced fatigue (P<0.05)., Conclusions: The current findings of experiences of fatigue in patients with IPF or pulmonary sarcoidosis provide insights for professionals treating these patients. Although similarities were found in the several experiences of fatigue across non-severely and severely fatigued patients, differences were also evident and could be mapped for IPF and sarcoidosis., Competing Interests: Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://dx.doi.org/10.21037/jtd-21-462). MAS reports grants from Lung Foundation Netherlands, grants from Stichting Astma Bestrijding, grants and personal fees from Boehringer Ingelheim, and grants and personal fees from AstraZeneca, outside the submitted work. The other authors have no conflicts of interest to declare., (2021 Journal of Thoracic Disease. All rights reserved.)

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., Competing Interests: Conflict of interest: Z. Ebadi has nothing to disclose. Conflict of interest: M.J. Goërtz has nothing to disclose. Conflict of interest: M. Van Herck has nothing to disclose. Conflict of interest: D.A.J. Janssen reports personal fees from Novartis, Boehringer Ingelheim and AstraZeneca, outside the submitted work. Conflict of interest: M.A. Spruit reports grants from Netherlands Lung Foundation, Stichting Astma Bestrijding, Boehringer Ingelheim and AstraZeneca, during the conduct of the study; and personal fees from Boehringer Ingelheim and AstraZeneca, outside the submitted work. Conflict of interest: C. Burtin has nothing to disclose. Conflict of interest: M.S.Y. Thong has nothing to disclose. Conflict of interest: J. Muris has nothing to disclose. Conflict of interest: J. Otker has nothing to disclose. Conflict of interest: M. Looijmans has nothing to disclose. Conflict of interest: C. Vlasblom has nothing to disclose. Conflict of interest: J. Bastiaansen has nothing to disclose. Conflict of interest: J. Prins has nothing to disclose. Conflict of interest: E.F.M. Wouters has nothing to disclose. Conflict of interest: J.H. Vercoulen has nothing to disclose. Conflict of interest: J.B. Peters has nothing to disclose., (©The authors 2021.)

Population studies showed a decrease in psychological wellbeing during the COVID-19 pandemic. Asthma is associated with a negative effect on anxiety and depression, which might worsen during the COVID-19 lockdown. The aim of the study was to compare fear, anxiety and depression between asthma patients and patients wit hout asthma pre-COVID-19 and during COVID-19 pandemic.This study compares fear, anxiety and depression in asthma patients and controls between pre-COVID-19 and during COVID-19 lockdown with a cross-sectional online survey. Participants were invited to fill out several questionnaires pertaining to fear, anxiety, depression, asthma control and quality of life.Asthma patients (N = 37) displayed, during the course of the pandemic, a clinically relevant increase in anxiety (3.32 ± 2.95 vs. 6.68 ± 3.78; p < 0.001) and depression (1.30 ± 1.15 vs. 3.65 ± 3.31; p < 0.001), according to the hospital anxiety and depression levels (HADS) compared to pre-COVID-19 assessment. This was not seen in controls. Also, asthma patients displayed more anxiety about acquiring COVID-19 disease compared to controls ((5.11 ± 1.99 vs. 3.50 ± 2.79), p = 0.006).Patients with asthma experienced an increase in anxiety and depression levels and were more afraid of acquiring COVID-19 disease compared to controls. Also, patients with asthma were more likely to avoid healthcare facilities due to fear of acquiring COVID-19 disease compared to controls. Therefore, we advise health care workers to address these possible negative effects on mental health by phone or e-consults.

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., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

In this study, we compare health status between COPD patients treated in three different care levels in the Netherlands and assess determinants that influence their health status. We applied the Nijmegen Clinical Screening Instrument to measure eight health status subdomains in primary (n = 289), secondary (n = 184) and tertiary care (n = 433) COPD patient cohorts. Proportions of patients with severe problems in ≥3 subdomains are 47% in primary, 71% in secondary and 94% in tertiary care. Corrected for patient characteristics, differences between the care levels are statistically significant for nearly all health status subdomains. The pooled cohort data show female sex, age, FEV 1 % predicted and BMI to be determinants of one or more subdomains. We conclude that the proportion of COPD patients with severe health status problems is substantial, not just in tertiary care but also in primary and secondary care. Use of detailed health status information may support patient-tailored COPD care.

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; p < 0.01) with FCS, QoL-RIQ-Activity, and EQ-5D-5L-Health and moderately (0.3 < ρ < 0.5; p < 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., Competing Interests: The authors declare no conflict of interest.

To date, it remains unknown which patients report a clinically-relevant improvement in fatigue following pulmonary rehabilitation (PR). The purpose of this study was to identify and characterize these responders. Demographics, lung function, anxiety (anxiety subscale of the 90-item symptom checklist (SCL-90-A)), depression (Beck depression inventory for primary care (BDI-PC)), exercise tolerance (six-minute walking distance test (6MWD)), and health status (Nijmegen clinical screening instrument (NCSI)) were assessed before and after a 12-week PR programme. Fatigue was assessed using the checklist individual strength (CIS)-Fatigue. Patients with a decline ≥ 10 points (minimally clinically important difference, MCID) on the CIS-Fatigue were defined as responders. Chronic obstructive pulmonary disease (COPD) patients ( n = 446, 61 ± 9 years, 53% male, forced expiratory volume in 1 s (FEV1) 43% ± 18% predicted, 75% severe fatigue) were included. Mean change in fatigue after PR was 10 ± 12 points ( p < 0.01) and exceeded the MCID. In total, 56% were identified as fatigue responders. Baseline CIS-Fatigue (45 ± 7 vs. 38 ± 9 points, respectively, p < 0.001) and health-related quality-of-life (HRQoL; p < 0.001) were different between responders and non-responders. No differences were found in demographics, baseline anxiety, depression, lung function, 6MWD, and dyspnoea ( p -values > 0.01). Responders on fatigue reported a greater improvement in anxiety, depression, 6MWD, dyspnoea (all p -values < 0.001), and most health status parameters. PR reduces fatigue in COPD. Responders on fatigue have worse fatigue and HRQoL scores at baseline, and are also likely to be responders on other outcomes of PR.

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.

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, ρ = -0.083); was related moderately to ACQ ( ρ = 0.455), AQLQ ( ρ = -0.554), and MRC ( ρ = 0.435; all p -values < 0.001); and was related weakly to 6MWT ( ρ = -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.

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., Competing Interests: Conflict of interest: M.A. Spruit reports personal fees from AstraZeneca, Boehringer Ingelheim, GSK and Novartis, outside the submitted work. Conflict of interest: E.F.M Wouters has received fees for board membership from Nycomed and Boehringer, and has received grants from AstraZeneca and GSK. He has also received payment for lectures (including service on speakers bureaus) from AstraZeneca, GSK, Novartis and Chiesi. Conflict of interest: F.M.E. Franssen reports personal fees from AstraZeneca, Chiesi, Novartis, Boehringer Ingelheim, GlaxoSmithKline and TEVA, outside the submitted work., (Copyright ©ERS 2018.)

Introduction: Fatigue is the second most common symptom in patients with chronic obstructive pulmonary disease (COPD). Despite its high prevalence, fatigue is often ignored in daily practice. For this reason, little is known about the underlying determinants of fatigue in patients with COPD. The primary objectives of this study are to chart the course of fatigue in patients with COPD, to identify the physical, systemic, psychological and behavioural factors that precipitate and perpetuate fatigue in patients with COPD, to evaluate the impact of exacerbation-related hospitalisations on fatigue and to better understand the association between fatigue and 2-year all-cause hospitalisation and mortality in patients with COPD. The secondary aim is to identify diurnal differences in fatigue by using ecological momentary assessment (EMA). This manuscript describes the protocol of the FAntasTIGUE study and gives an overview of the possible strengths, weaknesses and clinical implications., Methods and Analysis: A 2-year longitudinal, observational study, enrolling 400 patients with clinically stable COPD has been designed. Fatigue, the primary outcome, will be measured by the subjective fatigue subscale of the Checklist Individual Strength (CIS-Fatigue). The secondary outcome is the day-to-day/diurnal fatigue, registered in a subsample (n=60) by EMA. CIS-Fatigue and EMA will be evaluated at baseline, and at 4, 8 and 12 months. The precipitating and perpetuating factors of fatigue (physical, psychological, behavioural and systemic) will be assessed at baseline and at 12 months. Additional assessments will be conducted following hospitalisation due to an exacerbation of COPD that occurs between baseline and 12 months. Finally, at 18 and 24 months the participants will be followed up on their fatigue, number of exacerbations, exacerbation-related hospitalisation and survival., Ethics and Dissemination: This protocol was approved by the Medical research Ethics Committees United, Nieuwegein, the Netherlands (NL60484.100.17)., Trial Registration Number: NTR6933; Pre-results., Competing Interests: Competing interests: Professor Spruit discloses receiving personal remuneration for consultancy and/or lectures from Boehringer Ingelheim, GSK, Novartis and AstraZeneca outside the scope of this work., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

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 (β = -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.

Background: Although proxies of patients with chronic obstructive pulmonary disease (COPD) need health-related knowledge to support patients in managing their disease, their current level of knowledge remains unknown. We aimed to compare health-related knowledge (generic and COPD-related knowledge) between patients with COPD and their resident proxies., Methods: In this cross-sectional study, we included stable patients with moderate to very severe COPD and their resident proxies (n = 194 couples). Thirty-four statements about generic health and COPD-related topics were assessed in patients and proxies separately. Statements could be answered by 'true', 'false', or 'do not know'. This study is approved by the Medical Research Ethics Committees United (MEC-U), the Netherlands (NL42721.060.12/M12-1280)., Results: Patients answered on average 17% of the statements incorrect, and 19% with 'do not know'. The same figure (19%) for the incorrect and unknown statements was shown by proxies. Patients who attended pulmonary rehabilitation previously answered more statements correct (about three) compared to patients who did not attend pulmonary rehabilitation. More correct answers were reported by: younger patients, patients with a higher level of education, patients who previously participated in pulmonary rehabilitation, patients with better cognitive functioning, and patients with a COPD diagnosis longer ago., Conclusions: Proxies of patients with COPD as well as patients themselves answer about two third of 34 knowledge statements about COPD correct. So, both patients and proxies seem to have an incomplete knowledge about COPD and general health. Therefore, education about general health and COPD should be offered to all subgroups of patients with COPD and their proxies., Trial Registration: This study is registered in the Dutch Trial Register ( NTR3941 ). Registered 19 April 2013.

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.

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., (The content of this work is not subject to copyright. Design and branding are copyright ©ERS 2016.)

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.

Objectives: Resident relatives of patients with chronic obstructive pulmonary disease (COPD) may play a major role in obtaining a healthy lifestyle for patients. Little is known about resident relatives. This study aimed to compare health status, morbidities, care dependency, and mobility between patients with COPD and their resident relatives., Design: Cross-sectional study., Participants: Stable patients with moderate to very severe COPD (n = 194) and their resident relatives (n = 194) were visited in their home environment., Measurements: Post-bronchodilator spirometry was assessed and generic health status was measured using the EuroQol-5 Dimensions and the Assessment of Quality of Life with 8 dimensions. Care dependency was measured using the Care Dependency Scale. Mobility was measured using the Timed "Up and Go" test (TUG). Morbidities (COPD, hypertension, anxiety and depression, obesity, and muscle wasting) were determined using accepted disease cutoff points and/or receiving specific treatment., Results: Age (patients: 66.0 [8.7], resident relatives: 64.8 [9.7]) and gender (male patients: 53%, male resident relatives: 45%) were comparable. Patients had worse generic health status, higher level of care dependency, and worse mobility. 29% of the resident relatives had airflow limitation based on the Tiffeneau index and 19% based on the lower limit of normal, 33% were current smokers, and 92% had at least one chronic condition. Resident relatives more frequently had hypertension (46% versus 69%)., Conclusion: Resident relatives of patients with COPD are often current smokers and often have undiagnosed morbidities. Although their health status is better compared with patients, their disease management and health behavior should also be considered when advising patients in obtaining a healthier lifestyle and also when involving them as informal caregivers., (Copyright © 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

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.

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., (Copyright ©ERS 2015.)

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., (© 2015 the Nordic Societies of Public Health.)

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., (Copyright © 2014 The British Infection Association. Published by Elsevier Ltd. All rights reserved.)

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)., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

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., (Copyright © 2014 The British Infection Association. Published by Elsevier Ltd. All rights reserved.)

Background: Patients with chronic obstructive pulmonary disease (COPD) encounter many (gradual) losses due to their disease, which trigger a grieving process. This process is characterized by stages of denial, resistance, sorrow, and acceptance., Purpose: This study examined whether these stages are conceptually distinct and whether the Acceptance of Disease and Impairments Questionnaire (ADIQ) can validly and reliably measure these stages in three samples of patients with COPD in the Netherlands., Methods: Exploratory factor analysis (EFA) was performed on 145 outpatients with moderate to severe COPD. Confirmatory factor analyses were performed on 303 outpatients with mild to very severe COPD and 127 patients entering an inpatient pulmonary rehabilitation program. Furthermore, internal reliability, construct validity, sensitivity to change, and floor and ceiling effects were examined., Results: EFA yielded a four-factor solution that explained 73.2 % of variance. Confirmatory factor analyses showed a good fit of the four-factor structure in all study samples. Cronbach's alpha reliability coefficients were .79 or higher. Subscales showed to be sensitive to change., Conclusions: Four distinct stages of grief are recognized in COPD. The ADIQ is a valid and reliable instrument to measure these stages: denial, resistance, sorrow, and acceptance. Measuring the stages of grieving is important for disease management: addressing patients with a specific therapeutic approach for the stage they are in could help to motivate patients to engage in self-management and change their lifestyle.

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., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Background: 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., Purpose: 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., Methods: 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., Results: 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., Conclusions: 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: 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.

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 (ΔIC 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., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

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., (Copyright © 2012 S. Karger AG, Basel.)

Objective: To assess the long term effects of two different modes of disease management (comprehensive self management and routine monitoring) on quality of life (primary objective), frequency and patients' management of exacerbations, and self efficacy (secondary objectives) in patients with chronic obstructive pulmonary disease (COPD) in general practice., Design: 24 month, multicentre, investigator blinded, three arm, pragmatic, randomised controlled trial., Setting: 15 general practices in the eastern part of the Netherlands., Participants: Patients with COPD confirmed by spirometry and treated in general practice. Patients with very severe COPD or treated by a respiratory physician were excluded., Interventions: A comprehensive self management programme as an adjunct to usual care, consisting of four tailored sessions with ongoing telephone support by a practice nurse; routine monitoring as an adjunct to usual care, consisting of 2-4 structured consultations a year with a practice nurse; or usual care alone (contacts with the general practitioner at the patients' own initiative)., Outcome Measures: The primary outcome was the change in COPD specific quality of life at 24 months as measured with the chronic respiratory questionnaire total score. Secondary outcomes were chronic respiratory questionnaire domain scores, frequency and patients' management of exacerbations measured with the Nijmegen telephonic exacerbation assessment system, and self efficacy measured with the COPD self-efficacy scale., Results: 165 patients were allocated to self management (n=55), routine monitoring (n=55), or usual care alone (n=55). At 24 months, adjusted treatment differences between the three groups in mean chronic respiratory questionnaire total score were not significant. Secondary outcomes did not differ, except for exacerbation management. Compared with usual care, more exacerbations in the self management group were managed with bronchodilators (odds ratio 2.81, 95% confidence interval 1.16 to 6.82) and with prednisolone, antibiotics, or both (3.98, 1.10 to 15.58)., Conclusions: Comprehensive self management or routine monitoring did not show long term benefits in terms of quality of life or self efficacy over usual care alone in COPD patients in general practice. Patients in the self management group seemed to be more capable of appropriately managing exacerbations than did those in the usual care group., Trial Registration: Clinical trials NCT00128765.

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.

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.

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.

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.

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.

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., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)

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 quality of life is not as disease-specific as one might think and also relies on factors such as age, normal maturation and gender.

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 for worse scores. Our data emphasise that more attention is needed not only to prevent exposure to Q-fever but also for the prevention and treatment of the long-term consequences of this zoönosis.

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.

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 appropriately only for measuring problems in the sub-domains Subjective Symptoms and Subjective Impairment, and not for measuring problems in other sub-domains of health status, such as Quality of Life.