Why patients decline participation in an intervention to reduce re-hospitalization through patient activation: whom are we missing?

BACKGROUND: Despite worldwide interest in reducing re-hospitalization, there is limited knowledge regarding characteristics of patients who chose to decline participation in such efforts and why. The aim is to explore reasons to decline participation in an intervention using motivational interviewing to reduce re-hospitalization through patient activation for persons with chronic obstructive pulmonary disease or heart failure. METHODS: This study uses data from 385 patients who were asked about participating in a randomized controlled trial; of these, 232 declined participation. Data on age, gender, and diagnosis were collected for those who agreed to participate and those who declined. Reasons to decline participation were collected for those who were asked to participate but refused. The stated reasons to decline were analyzed using content analysis, and the categories identified were used for the statistical analysis. RESULTS: The main reasons for declining participation were having sufficient support (17.5%), no need for support (16%), being too ill (14.6%), and lack of time for illness-related activities (14.2%). A statistically significant negative association between age and willingness to participate was found (odds ratio = − 0.03, 95% confidence interval 0.95–0.99). CONCLUSIONS: Those who agreed to participate were younger than non-participants, and non-participants either lacked time for illness-related activities or did not have the energy needed to become involved in the intervention. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02823795. Registered on 1 July 2016.