Patient Activation in Childhood, Adolescent, and Young Adult Cancer Survivors: Current Insights and Implications for Survivorship Care-A Systematic Review From the e-QuoL Project.

PURPOSE: Patient activation-encompassing knowledge, confidence, and skills in managing individual's health-is a cornerstone of person-centered care. However, its significance among childhood, adolescent, and young adult cancer survivors (CAYACS) remains unexplored. This article examines the application of the 13-item Patient Activation Measure (PAM-13) in CAYACS, highlights factors influencing activation levels, and draws insights from adult oncology.

METHODS

A systematic review was conducted to identify studies assessing patient activation using PAM-13 in CAYACS populations.

RESULTS

Only two relevant studies were identified. Reduced activation levels were associated with psychological distress, fatigue, neurocognitive impairment, and complex late effects. Activation levels fluctuated over time, with lower levels during active treatment and higher levels during disease-free survivorship. Evidence from adult oncology suggests that structured education, psychosocial support, and hybrid care models (e.g., Oncokompas and SMARTCare) may enhance health ownership. However, limitations, such as PAM-13 ceiling effects and potential psychometric variability in oncology populations, have been reported.

CONCLUSIONS

Activation-based approaches hold promise for improving self-management in CAYACS. Future interventions should be developmentally tailored, acknowledge caregiver roles, and address transition-related challenges and disparities in healthcare access. Recognizing patient engagement as a core outcome in survivorship research may strengthen personalized care and support the development of scalable, evidence-based interventions.

IMPLICATIONS FOR CANCER SURVIVORS: Despite some measurement biases, activation assessment in CAYACS facilitates identification of vulnerable survivors, enables tailored interventions, and fosters empowerment and self-management to improve personalized survivorship care and long-term outcomes.