Jan H. Vercoulen

Self-management programmes for COPD: moving forward

Self-management is of increasing importance in chronic obstructive pulmonary disease (COPD) management. However, there is confusion over what processes are involved, how the value of self-management should be determined, and about the research priorities. To gain more insight into and agreement about the content of programmes, outcomes, and future directions of COPD self-management, a group of interested researchers and physicians, all of whom had previously published on this subject and who had previously collaborated on other projects, convened a workshop. This article summarises their initial findings. Self-management programmes aim at structural behaviour change to sustain treatment effects after programmes have been completed. The programmes should include techniques aimed at behavioural change, be tailored individually, take the patient’s perspective into account, and may vary with the course of the patient’s disease and co-morbidities. Assessment should include process variables. This report is a step towards greater conformity in the field of self-management. To enhance clarity regarding effectiveness, future studies should clearly describe their intervention, be properly designed and powered, and include outcomes that focus more on the acquisition and practice of new skills. In this way more evidence and a better comprehension on self-management programmes will be obtained, and more specific formulation of guidelines on self-management made possible.

Comprehensive self management and routine monitoring in chronic obstructive pulmonary disease patients in general practice: randomised controlled trial

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.

The health status of Q-fever patients after long-term follow-up.

BackgroundIn 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.Methods870 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).ResultsThe 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.ConclusionsQ-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.

An Integral assessment framework of health status in chronic obstructive pulmonary disease (COPD).

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.

Definition of a COPD self-management intervention: International Expert Group consensus

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. Consensus of a conceptual definition of what should be a COPD self-management intervention with its requisites http://ow.ly/Zfr0F

Assessing the long-term health impact of Q-fever in the Netherlands: a prospective cohort study started in 2007 on the largest documented Q-fever outbreak to date.

BackgroundBetween 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/designTwo 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.DiscussionThis 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.

A simple method to enable patient-tailored treatment and to motivate the patient to change behaviour:

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.

Associations of muscle depletion with health status. Another gender difference in COPD

BACKGROUND & AIMS Muscle mass depletion occurring in chronic obstructive pulmonary disease still leaves questions regarding its relation with health status. How health status should be conceived and assessed is a significant obstacle in answering these questions. This study tries to appoint which domains of health status are challenged by muscle depletion and evaluates evidence of gender difference. METHODS 135 Patients enrolled in a cohort study with initial assessment of health status by the Nijmegen Integral Assessment Framework. In here 4 main domains and 16 sub-domains are recognized. These sub-domains were correlated with fat free mass index using baseline data. Associations of fat free mass and diffusion parameters with sex were elaborated. RESULTS Muscle depletion occurred predominantly in those with low body mass index, and did not correlate with sub-domains of 3 main domains: Complaints, Functional Impairment and Quality of Life. In Physiological Functioning Hyperinflation correlated weakly. Diffusion capacity significantly correlated with fat free mass index in separate analyses of pulmonary function data. Interestingly, diffusion capacity was significantly lower in women than in men. CONCLUSIONS Muscle depletion hardly affects health status in COPD. Physiological correlations, however, do exist, pointing to severe disease, especially emphysema, and female sex as important concomitant factors.

Validity of an automated telephonic system to assess COPD exacerbation rates

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.

An observational, longitudinal study on the home environment of people with chronic obstructive pulmonary disease: the research protocol of the Home Sweet Home study

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).