ABC Index: quantifying experienced burden of COPD in a discrete choice experiment and predicting costs

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 severe is predictive of future healthcare costs. TRIAL REGISTRATION NUMBER: NTR3788; Post-results.