Patient activation and treatment decision-making in the context of cancer: examining the contribution of informal caregivers’ involvement

Purpose The present work investigated the relationship between patient activation, treatment decision-making, and adherence to the prescribed treatment regimen. Given the role of informal caregivers in patient-reported outcomes, it was additionally assessed whether caregiver involvement acted as a moderator of this relationship. Methods Survey data collected from 504 cancer survivors were utilized. Structural equation modeling (SEM) controlling for covariates was used to examine the relationship between patient activation measure (PAM), caregiver involvement, and the identified outcomes. Moderator analysis was conducted using multiple group SEM. Results Patient activation was significantly associated with treatment planning being reflective of survivors’ goals and values ( p < 0.001); adherence to treatment ( p = 0.011); and satisfaction ( p < 0.001). Caregiver’s involvement significantly moderated the association between activation and adherence to treatment. Conclusions Patient activation was positively associated with all three selected outcomes. However, for cancer survivors reporting low rates of caregiver’s involvement, patient activation was not associated with treatment adherence. Research is needed to test and deliver self-management interventions inclusive of informal caregivers. Implications for Cancer Survivors Findings supported the need not only to monitor and sustain patient activation across the cancer continuum, but also to assume a dyadic perspective when designing self-management interventions in cancer survivorship.