THE EXPERIENCE OF CANCER PAIN: DEVELOPING INTEGRATED SUPPORT SYSTEMS FOR BREAST CANCER PATIENTS WITH CHRONIC PAIN INFORMED BY PATIENT AND CAREGIVER INSIGHTS

Introduction: Chronic pain (CP) significantly affects the quality of life (QoL) of cancer patients and their informal caregivers, necessitating a multidimensional approach to address its complexities. This doctoral thesis synthesizes findings from four years of research, focusing on cancer-related CP, particularly in breast cancer survivors and their caregivers. Methods: The research began with a narrative review (Study 1) that synthesized existing data on the impacts of CP on both patients’ and caregivers’ QoL. Subsequent studies utilized a mix of qualitative and quantitative methods. Online platforms (Study 2) and focus groups (Study 3) collected data on patients' and caregivers' unmet needs, emotional responses, and treatment preferences concerning CP, particularly in breast cancer survivorship. The final study (Study 4) evaluated the usability of PainRELife, a novel digital health tool for managing breast cancer CP and enhancing patient engagement in treatment decisions. Results: Study 1 revealed an overall reduction in QoL and emphasized the need for a bidirectional perspective on CP’s impacts. Study 2 identified distinct emotional and practical needs through online community data. Study 3’s focus groups highlighted significant barriers to pain management, the need for psychosocial support, and caregiver emotional challenges. Study 4 demonstrated the PainRELife app’s effectiveness, showing improved pain self-efficacy, reduced pain intensity, and enhanced patient engagement in shared decision-making processes. Discussion: The studies revealed the complexity of CP management, particularly in breast cancer, highlighting diverse needs between patients and caregivers. Digital tools like PainRELife show potential for enhancing CP self-management and outcomes, underscoring the need for holistic, patient-centered approaches in cancer care.