Background: Patients with chronic lymphocytic leukemia (CLL) reporting high levels of distress due to knowledge gaps and emotional concerns can have negative outcomes and suffer from lower quality of life. Understanding patients’ activation levels, causes of distress, knowledge gaps, and psychosocial needs are crucial in high quality care. Optimally activated, educated and empowered patients are better positioned to communicate effectively with providers regarding selection of, and adherence to, CLL treatment protocols and long-term care plans, and potentially improving quality of life. Methods: We recruited 44 adults with CLL from the University of Alabama at Birmingham Health System Cancer Community Network from April to July of 2015 as part of an educational and quality improvement initiative. Patient-reported distress assessments were collected to evaluate distress levels and causes of distress. The Patient Activation Measure (PAM 13) was used to evaluate patient activation (1-4 scale with 4 maximally activated). Results: The median participant age was 69 years old (range 50-89 years). Thirty percent had completed ≤ 12 years of education, 20% had some college education. Thirty-nine percent were on active treatment, 59% were in observation; 2% were uncertain of treatment. Fifty seven percent of participants were maximally activated (level 4); 11% had an activation level of 3; 20% had a level of 2; and 11% had the lowest level of activation (level 1). Twenty-five percent reported moderate distress (≥ 4) and 5% reported severe distress (≥ 8); 34% reported distress due to psychosocial concerns and 25% due to knowledge gaps. Conclusions: This project demonstrates a need to improve patient activation levels and minimize patient distress related to knowledge gaps and psychosocial concerns related to CLL. Well-designed, easily accessible educational interventions and multi-level quality improvement programs may be helpful in improving patient engagement by providing necessary knowledge to improve patient-provider communication and optimize patient outcomes.