Survivorship preparedness and activation among survivors of lymphoma

Abstract

Objectives Taking an active role in managing post-treatment care has emerged as a key aspect of promoting a successful transition into survivorship and is associated with better patient outcomes. In this study, we focus on two key aspects of active self-management, activation and preparedness. 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 individuals perceived they had sufficient information about what to expect after cancer treatments are completed. The study goal was to characterize survivorship preparedness and activation among lymphoma survivors within 5 years of treatment completion in New Jersey and examine the association of sociodemographic, medical, care transition experiences, practical concerns, and psychosocial factors with activation and preparedness. Methods One hundred and one Hodgkin lymphoma or non-Hodgkin lymphoma survivors who had completed treatment within 5 years completed a survey of survivorship care experiences (response rate = 34.12%). Results Approximately 60% of survivors reported high activation, with similar percentages for higher preparedness. Less activated survivors were significantly (p < .05) younger, married, resided in a more deprived geographic area, and reported more fatigue and information needs. Less activated survivors reported recalling that their providers were significantly (p < .05) less likely to discuss long-term side effects, psychosocial needs, risk-reducing lifestyle recommendations, and how to manage other medical concerns. Fewer care transition practices were most strongly associated with lower preparedness. Conclusions A significant proportion were not activated for survivorship, and both activation and preparedness were strongly associated with providers’ survivorship transition practices. Implications for Cancer Survivors Implementing programs to foster more activation and preparedness for lymphoma survivorship care would benefit from education about recommended follow-up care and healthy lifestyle practices. Providers should routinely ask about their patients’ confidence and preparedness for survivorship and provide referrals for appropriate care as needed.