FROM PATIENT TO EXPERT: EDUCATION FOR SELF-MANAGEMENT OF HEPATOCELLULAR CARCINOMA IN A CLINICAL EXCELLENCE PROGRAM

Introduction and Objectives

Education for patients and caregivers is essential to improve understanding of hepatocellular carcinoma, support self-management, and promote informed decisions. At Fundación Cardioinfantil, a structured educational program was implemented as part of the Clinical Excellence Program. This work aims to describe the program’s implementation, and the progress achieved in patient knowledge, treatment adherence, and continuity of care at home.

Materials and Methods

A descriptive, cross-sectional study was conducted to describe the educational process delivered to patients with hepatocellular carcinoma and their caregivers. Patients are initially assessed to determine their level of disease knowledge and classified into basic, intermediate, or advanced levels. Based on this, they receive a personalized education plan with printed materials and guided sessions. Progress is evaluated quarterly during follow-up visits to reinforce or adjust the intervention.

Results

Since its implementation, the program has provided education to 106 patients. Currently, 68% have progressed to intermediate or advanced levels, while 32% remain at the basic level, either because they are in the early stages of the program or awaiting the start of treatment. Among the 40 active patients, 28 have reached an advanced educational level, reflected in greater disease understanding, recognition of warning signs, and improved adherence reported during clinical follow-up.

Conclusions

Educational strategy implemented within the Hepatocellular Carcinoma Clinical Excellence Program has proven effective in empowering patients through a structured and personalized approach. The educational progress underscores the value of integrating education into clinical care, allowing patients to actively and confidently participate in managing their condition. This experience represents a replicable model that could be adapted to other chronic disease care initiatives, particularly in high-complexity healthcare settings across Latin America.

Conflict of interest: None

Figure 1. Educational Program – HCC Clinical Excellence Program

Figure 2. Educational Outcomes – HCC Clinical Excellence Program