Patient Activation of Breast Cancer Patients: Results from the Longitudinal ADAPT Study

Purpose: As breast cancer is transforming into a chronic illness, patient self-management is more important. An indicator of self-management is patient activation, defined as the knowledge, skills, and confidence a person has to manage their health and well-being. This study aimed to identify sociodemographic, clinical, and symptom experience factors associated with patient activation in breast cancer patients over time.Methods: Data from the ADAPT study were used for secondary analysis (n = 166). Patient activation was measured using the Patient Activation Measure 13 (PAM-13; range 0–100), at baseline, six weeks, three months, six months, and one year from diagnosis. Linear mixed-effects regression was used to analyze the repeated PAM-13 scores. Fixed effects included age, educational level, partner/children status, comorbidities, tumor and lymph node stage, receptor status, psychological distress, fatigue, and physical functioning.Results: Mean PAM-13 scores ranged from 59.3–63.2 across all time points. Psychological distress was negatively associated with patient activation over time (−0.56, p = 0.001). Other patient characteristics, tumor details, fatigue, and physical functioning were not associated.Conclusion: Patient activation is relatively high in early-stage breast cancer patients. Identifying individuals experiencing psychological distress would allow healthcare providers to target interventions effectively, potentially enhancing the efficiency of long-term breast cancer care.Trial registration: ClinicalTrials.gov identifier: NCT03866655.