Objective. This study aimed to increase our understanding of activation and preparedness among oral cancer survivors. Activation was defined as understanding one’s role in the care process and having the knowledge, skill, and confidence to take on a role in managing self-care. Preparedness was defined as the extent to which survivors perceived they have sufficient information about what to expect after cancer treatments are completed. The study goal was to identify oral and oropharyngeal survivors at greater risk of low activation and preparedness to inform future self-management interventions.
Methods. This study used data from the baseline surveys of a randomized controlled trial evaluating an online self-management intervention for survivors of oral cancer. Participants completed a questionnaire assessing activation, preparedness, and psychosocial factors. Data from 593 participants was analyzed.
Results. Higher activation was associated with receiving a treatment summary, having Medicare or other insurance. Having a recurrence, more information needs, and higher levels of depression were associated with less activation. Greater preparedness was associated with older age, having a partner, having Medicare insurance, and receipt of a treatment summary. Lower preparedness was significantly associated with being female, Hispanic ethnicity, identifying as multiple races or a self-described race, being employed full or part time, more information needs, and more depressive symptoms.
Conclusions. These results show the sociodemographic, medical, care transition practices, and psychosocial factors connected to preparedness and activation among oral cancer survivors, which should be considered when developing effective self-management interventions for survivors.