Participation in Life Roles in People with Chronic Obstructive Pulmonary Disease

Abstract

For older adults and those with chronic disease, participation, or involvement in a life situation, is an important patient-centred aspect of health. Participation is commonly restricted in these individuals and is related to worse health outcomes and death. Despite its importance, in people with chronic obstructive pulmonary disease (COPD), participation is rarely assessed and targeted, perhaps due to the lack of validated outcome measures of participation in this population. The main objective of this thesis was to establish the psychometric properties of a measure of participation, the Late Life Disability Instrument (LLDI), in people with COPD and to explore participation restrictions in people with COPD. The first study showed that the LLDI demonstrated construct validity, internal consistency and test-retest reliability in people with COPD. In the second study, we found that people with COPD had worse scores on the LLDI than age-matched controls without respiratory disease, meaning that they participated less frequently and had greater limitations in participation. The third study established the validity and reliability of the LLDI’s computer adaptive test (LLDI-CAT) in people with COPD. And finally, the fourth study explored the responsiveness of the LLDI and LLDI-CAT in people with COPD who participated in pulmonary rehabilitation and provided estimates for the minimal important difference (MID) values on both measures. The findings from the four studies included in this thesis support the assessment of participation in people with COPD and the use of the LLDI and LLDI-CAT as tools for that purpose. The LLDI-limitation domain in particular appears responsive to changes that occur with pulmonary rehabilitation. Researchers and clinicians can use the MID values to interpret change scores on the LLDI and LLDI-CAT, increasing the clinical utility of these tools. These studies lay the groundwork for the development of interventions that target participation in people with COPD.