Characterization of Patient Activation among Childhood Cancer Survivors in the St. Jude Lifetime Cohort Study (SJLIFE)

Patient activation describes a willingness to take action to manage health and is associated with health outcomes. The purpose of this study was to characterize patient activation and its association with psychological outcomes and health behaviors in childhood cancer survivors.

Participants were from the St. Jude Lifetime Cohort Study (SJLIFE). Activation levels (1-4, 4 = highest activation) were measured with the Patient Activation Measure (PAM). Psychological outcomes and health behaviors were obtained via self-report. Cognitive function was assessed by trained examiners. ANOVA or chi-squared tests were utilized to assess group-level differences in activation. Multivariable regression models were used to assess associations between PAM scores and outcomes of interest.

Among 2708 survivors and 303 controls, more survivors endorsed lower activation levels than the controls (11.3 vs. 4.7% in level 1) and fewer survivors endorsed the highest level of activation than the controls (45.3 vs. 61.5% in level 4). Not endorsing depression (OR: 2.37, 95% CI 1.87-2.99), anxiety (OR: 2.21, 95% CI 1.73-2.83), and somatization symptoms (OR: 1.99, 95% CI 1.59-2.50), general fear (OR: 1.45, 95% CI 1.23-1.71) and body-focused (OR: 2.21, 95% CI 1.83-2.66), cancer-related worry, and physical (OR: 2.57, 95% CI 2.06-3.20) and mental (OR: 2.08, 95% CI 1.72-2.52) HRQOL was associated with higher levels of activation. Lower activation was associated with not meeting physical activity guidelines (OR: 2.07, 95% CI 1.53-2.80).

Survivors endorsed lower activation levels than peers. Interventions to improve physical and psychological health outcomes could leverage these results to identify survivors who benefit from support in patient activation.