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Introduction: Self-management (SM) is a core component of well-being and perceived health for patients with chronic obstructive pulmonary disease (COPD). Most theories on SM share that self-efficacy, illness-perception and coping are determinants of SM behavior. Optimal support to improve SM should be tailored to the individual patient’s level of these determinants as SM abilities vary between patients. To tailor SM support, it is therefore necessary to assess the scores on these determinants. Unfortunately, no such instrument exists for clinical use. Therefore, the first goal of this study was to verify presumed correlations between SM and the determinants thereof. The second goal was to develop an instrument to assess the SM abilities. Methods: In this cross-sectional, observational study, COPD patients completed the General Self-Efficacy Scale (GSES), Brief Illness Perception Questionnaire (B-IPQ) and the Utrecht

BACKGROUND: Numerous instruments have been developed to assess patient reported outcomes; most approaches however focus on a single condition. With the increasing prevalence of multimorbidity, this might no longer be appropriate. Moreover, a more comprehensive approach that facilitates shared decision making and stimulates self-management is most likely more valuable for clinical practice than a questionnaire alone. This study aims to transform the Assessment of Burden of Chronic Obstructive Pulmonary Disease (COPD) (ABC)-tool into the Assessment of Burden of Chronic Conditions (ABCC)-tool for COPD, asthma, and diabetes mellitus type 2 (DM2). The tool consists of a scale, a visualisation of the outcomes, and treatment advice. METHODS: Requirements for the tool were formulated. Questionnaires were developed based on a literature study of existing questionnaires, clinical guidelines, interviews with patients and healthcare providers, and input from an expert group. Cut-off points and treatment advice were determined to display the results and to provide practical recommendations. RESULTS: The ABCC-scale consists of a generic questionnaire and disease-specific questionnaires, which can be combined into a single individualized questionnaire for each patient. Results are displayed in one balloon chart, and each domain includes practical recommendations. CONCLUSIONS: The ABCC-tool is expected to facilitate conversations between a patient and a healthcare provider, and to help formulate treatment plans and care plans with personalised goals. By facilitating an integrated approach, this instrument can be applied in a variety of circumstances and disease combinations.

Background. In discrete-choice experiments (DCEs), choice alternatives are described by attributes. The importance of each attribute can be quantified by analyzing respondents’ choices. Estimates are valid only if alternatives are defined comprehensively, but choice tasks can become too difficult for respondents if too many attributes are included. Several solutions for this dilemma have been proposed, but these have practical or theoretical drawbacks and cannot be applied in all settings. The objective of the current article is to demonstrate an alternative solution, the fold-in, fold-out approach (FiFo). We use a motivating example, the ABC Index for burden of disease in chronic obstructive pulmonary disease (COPD). Methods. Under FiFo, all attributes are part of all choice sets, but they are grouped into domains. These are either folded in (all attributes have the same level) or folded out (levels may differ). FiFo was applied to the valuation of the ABC Index, which included 15 attributes. The data were analyzed in Bayesian mixed logit regression, with additional parameters to account for increased complexity in folded-out questionnaires and potential differences in weight due to the folding status of doma

OBJECTIVE: The Assessment of Burden of COPD (ABC) tool supports shared decision making between patient and caregiver. It includes a coloured balloon diagram to visualise patients' scores on burden indicators. We aim to determine the importance of each indicator from a patient perspective, in order to calculate a weighted index score and investigate whether that score is predictive of costs.DESIGN: Discrete choice experiment.SETTING AND PARTICIPANTS: Primary care and secondary care in the Netherlands. 282 patients with chronic obstructive pulmonary disease (COPD) and 252 members of the general public participated.METHODS: Respondents received 14 choice questions and indicated which of two health states was more severe. Health states were described in terms of specific symptoms, limitations in physical, daily and social activities, mental problems, fatigue and exacerbations, most of which had three levels of severity. Weights for each item-level combination were derived from a Bayesian mixed logit model. Weights were rescaled to construct an index score from 0 (best) to 100 (worst). Regression models were used to find a classification of this index score in mild, moderate and severe that was discriminative in terms of healthcare costs.RESULTS: Fatigue, limitations in moderate physical activities, number of exacerbations, dyspnoea at rest and fear of breathing getting worse contributed most to the burden of disease. Patients assigned less weight to dyspnoea during exercise, listlessness and limitations with regard to strenuous activities. Respondents from the general public mostly agreed. Mild, moderate and severe burden of disease were defined as scores <20, 20-39 and ≥40. This categorisation was most predictive of healthcare utilisation and annual costs: €1368, €2510 and €9885, respectively.CONCLUSIONS: The ABC Index is a new index score for the burden of COPD, which is based on patients' preferences. The classification of the index score into mild, moderate and seve

__Objective:__ Assessing the effectiveness of the Assessment of Burden of COPD (ABC) tool on diseasespecific quality of life in patients with chronic obstructive pulmonary disease (COPD) measured with the St. George’s Respiratory Questionnaire (SGRQ), compared with usual care. __Methods:__ A pragmatic c

The newly developed Assessment of Burden of COPD (ABC) scale is a 14-item self-administered questionnaire which measures the physical, psychological, emotional and/or social burden as experienced by patients with chronic obstructive pulmonary disease (COPD). The ABC scale is part of the ABC tool that visualises the outcomes of the questionnaire. The aim of this study was to assess the reliability and construct validity of the ABC scale. This multi-centre survey study was conducted in the practices of 19 general practitioners and 9 pulmonologists throughout the Netherlands. N

In the management of chronic conditions, such as chronic obstructive pulmonary disease (COPD), there is a shift from doctor-driven care to patient-centred integrated care with active involvement of and self-management by the patient. A recently developed tool, the assessment of burden of COPD (ABC) tool, can be used in this transition to facilitate self-management support and shared decision-making. We performed a qualitative study, in which we collected and analysed the data using the methods of conventional content analyses. We performed in-depth interviews consisting of mainly open questions. Fifteen healthcare providers and 21 patients were interviewed who had worked with the ABC tool in daily care. In general, participants responded positively to the tool. Healthcare providers felt the visual representation provided was effective and comprehensible for patients and provided them with insight into their disease, a finding that patients confirmed. If patients were allowed to choose between a consultation with or without the ABC tool, the majority would prefer using the tool: it provides them with an overview and insight, which makes it easier to discuss all relevant topics related to COPD. The tool can provide structure in consultations, and is compatible with the concepts of 'motivational interviewing' and 'individualised care-planning'. Suggestions for improvement related to content and layout. So far, the tool has only been available as a stand-alone online program, that is not connected to the electronic medical record systems. It was therefore suggested that the tool be integrated into the systems to enhance its usability and its uptake by healthcare providers.

Background Chronic Obstructive Pulmonary Disease (COPD) is a growing worldwide problem that imposes a great burden on the daily life of patients. Since there is no cure, the goal of treating COPD is to maintain or improve quality of life. We have developed a new tool, the Assessment of Burden of COPD (ABC) tool, to assess and visualize the integrated health status of patients with COPD, and to provide patients and healthcare providers with a treatment algorithm. This tool may be used during consultations to monitor the burden of COPD and to adjust treatment if necessary. The aim of the current study is to analyse the effectiveness of the ABC tool compared with usual care on health related quality of life among COPD patients over a period of 18 months. Methods/Design A cluster randomised controlled trial will be conducted in COPD patients in both primary and secondary care throughout the Netherlands. An intervention group, receiving care based on the ABC tool, will be compared with a control group receiving usual care. The primary outcome will be the change in score on a disease-specific-quality-of-life questionnaire, the Saint George Respiratory Questionnaire. Secondary outcomes will be a different questionnaire (the COPD Assessment Test), lung function and number of exacerbations. During the 18 months follow-up, seven measurements will be conducted, including a baseline and final measurement. Patients will receive questionnaires to be completed at home. Additional data, such as number of exacerbations, will be recorded by the patients’ healthcare providers. A total of 360 patients will be recruited by 40 general practitioners and 20 pulmonologists. Additionally, a process evaluation will be performed among patients and healthcare providers. Discussion The new ABC tool complies with the 2014 Global Initiative for Chronic Obstructive Lung Disease guidelines, which describe the necessity to classify patients on both their airway obstruction and a comprehensiv

In deciding on the treatment plan for patients with chronic obstructive pulmonary disease (COPD), the burden of COPD as experienced by patients should be the core focus. It is therefore important for daily practice to develop a tool that can both assess the burden of COPD and facilitate communication with patients in clinical practice. This paper describes the development of an integrated tool to assess the burden of COPD in daily practice. A definition of the burden of COPD was formulated by a Dutch expert team. Interviews showed that patients and health-care providers agreed on this definition. We found no existing instruments that fully measured burden of disease according to this definition. However, the Clinical COPD Questionnaire meets most requirements, and was therefore used and adapted. The adapted questionnaire is called the Assessment of Burden of COPD (ABC) scale. In addition, the ABC tool was developed, of which the ABC scale is the core part. The ABC tool is a computer program with an algorithm that visualises outcomes and provides treatment advice. The next step in the development of the tool is to test the validity and effectiveness of both the ABC scale and tool in daily practice.