The COPD-SIB: a newly developed disease-specific item bank to measure health-related quality of life in patients with chronic obstructive pulmonary disease

BACKGROUND: Health-related quality of life (HRQoL) is widely used as an outcome measure in the evaluation of treatment interventions in patients with chronic obstructive pulmonary disease (COPD). In order to address challenges associated with existing fixed-length measures (e.g., too long to be used routinely, too short to ensure both content validity and reliability), a COPD-specific item bank (COPD-SIB) was developed. METHODS: Items were selected based on literature review and interviews with Dutch COPD patients, with a strong focus on both content validity and item comprehension. The psychometric quality of the item bank was evaluated using Mokken Scale Analysis and parametric Item Response Theory, using data of 666 COPD patients. RESULTS: The final item bank contains 46 items that form a strong scale, tapping into eight important themes that were identified based on literature review and patient interviews: Coping with disease/symptoms, adaptability; Autonomy; Anxiety about the course/end-state of the disease, hopelessness; Positive psychological functioning; Situations triggering or enhancing breathing problems; Symptoms; Activity; Impact. CONCLUSIONS: The 46-item COPD-SIB has good psychometric properties and content validity. Items are available in Dutch and English. The COPD-SIB can be used as a stand-alone instrument, or to inform computerised adaptive testing. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12955-016-0500-0) contains supplementary material, which is available to authorized users.