Chronic obstructive pulmonary disease (COPD) imposes a great burden on patients and is a major cause of morbidity with a significant impact on the wider economy.1

Airway obstruction used to play an important role in assessing disease severity and in treating COPD. Nowadays, the focus of COPD assessment shifts from merely airway obstruction towards patient-reported outcomes. Hence, the assessment addresses complaints, limitations in daily and social life, the progression of disease, and quality of life from the patients’ perspective.2

Research has shown that multidimensional indicators, such as the Body Mass Index, Airflow Obstruction, Dyspnoea, and Exercise Capacity Index3 and quality of life,4 are better predictors of morbidity, mortality and health-care utilisation than the forced expiratory volume in 1 s (FEV1) alone. Agusti and MacNee5 describe the necessity of a more personalised approach.

The development of our novel Assessment of Burden of COPD (ABC) tool intends to contribute to this approach. It allows quantification and visualisation of the burden of COPD, thereby facilitating the integrated approach crucial for assessment and individualised treatment of COPD.

A Dutch expert team was instituted by the Dutch Lung Alliance (in Dutch: Long Alliantie Nederland, LAN) to develop a tool to measure the burden of COPD. Several steps were taken to develop this tool. The first step was to define the burden of COPD. The following definition was formulated:

Burden of disease is the physical, emotional, psychological and/or social experiences of a patient with COPD. These experiences influence the patient´s ability to cope with the consequences of COPD and its treatment.

The second step was to validate this definition with the experiences of patients and health-care providers. Therefore, three focus group interviews with a total of 17 patients, 21 face-to-face interviews with different health-care professionals and three home visits to severely ill, homebound COPD patients were conducted. The interviews confirmed that our definition was in line with the experiences of patients and health-care providers.

The third step was to define the conditions that a burden of COPD instrument should meet. The Dutch expert group formulated nine conditions (Box 1).

The fourth step was to perform a literature review to search for questionnaires, instruments or indexes that measure the burden of COPD. The literature review revealed that the currently available instruments do not fully measure the burden of disease according to our definition and they do not meet all the formulated requirements (Figure 1). However, the Clinical COPD Questionnaire (CCQ) met most requirements and was therefore considered to be closest to reflecting the concept of burden of COPD. The CCQ has shown good validity, reliability and responsiveness at group and individual levels.6,7

Figure 1
figure 1

An overview of assessment tools in relation to requirements for a burden of disease instrument.

The fifth step was to develop the ABC scale using the CCQ as a basis. This scale is the core part of the ABC tool. The CCQ was adapted by adding questions for the lacking domains of emotions8 and fatigue.9 Three items were added to measure emotional experiences. These items are based on the distress screener of the four-dimensional symptom questionnaire,8 which measures listlessness, worry and feeling tense. The questions from the distress screener were revised to match the format of the CCQ questions. Furthermore, a question was added about fatigue, based on a study by Van Hooff et al.9 This item was also formulated in the same way as the questions on the CCQ. The 14 items together form the ABC scale (Table 1). The combination of the ABC scale with objective items—such as a patient’s smoking status and body mass index—creates a measure of the integrated health status of an individual COPD patient. We developed a computer program to visualise the integrated health status of a COPD patient, represented as a balloon for each item of the ABC tool (Figure 2). The combination of the ABC scale, the additional indicators and the visualisation of the scores together forms the ABC tool. A high, green balloon indicates that a patient scores well on a particular item. These green balloons can be used to compliment the patient (e.g., not smoking) and to encourage the patient to continue that behaviour. A low, red balloon indicates that the patient experiences problems on that item. Every score in between is indicated with an orange balloon. The red and dark-orange balloons can be the starting point of discussing the options for improvement with the patient during consultations. Hence, it forms the basis for shared decision making (SDM). Furthermore, an algorithm was developed to link the scores on the integrated health status with treatment advices. These were based on (inter)national treatment guidelines. This advice can guide the patient and care provider towards an integrated and personalised therapy. The ABC tool is consistent with SDM principles.10 The patient is considered to have a certain level of responsibility in the treatment that lies within his or her possibilities. The patient and health-care provider together can select one balloon on which to elaborate further (SDM choice phase). Clicking on a balloon gives access to treatment options (SDM option phase). The patient and health-care provider can then decide on the treatment goal by selecting an option and placing it in the patient’s treatment plan (SDM decision phase). This goal can then be adjusted further to the individual patient’s needs and preferences. SDM and a personal goal are important in motivating patients to feel responsible for their own treatment and well-being. When treatment advice is followed and the treatment is effective, the consequence is that the balloon for that particular item (e.g. body mass index) will move to a higher (more green) position or will not further decrease. As shown in Figure 2, patients see both the current balloons and the balloons of the previous consultation, which are made gray. The tool can therefore be used during each consultation to monitor a patient’s integrated health status over time. The next step in the development of the tool is to test its validity, its responsiveness and its effectiveness. Therefore it is important to perform a randomised clinical trial that investigates whether the quality of care and quality of life can be improved by using the ABC tool.

Table 1 The Assessment of Burden of COPD scale
Figure 2
figure 2

Visualisation of the dimensions influencing integrated health status (Assessment of Burden of COPD tool), changed after treatment.