Managing long-term medications is a complex and dynamic process that requires patients to adapt, organize, and sustain daily routines. Individuals living with chronic conditions regularly interact with multiple healthcare providers and access diverse sources of information, making care coordination challenging. At the same time, the shift toward patient-centered care underscores the importance of understanding how patients use medication-related information, make treatment decisions, and navigate the challenges inherent to long-term medication management.
Through four complementary studies, using both quantitative and qualitative methodologies, this thesis explores patients’ experiences with long-term medications to deepen the understanding of medication management from the patient perspective. The Contradictions study examined whether individuals with chronic conditions perceive conflicting medication information, assessed its prevalence and sources, and investigated its impact on patients’ navigation in the healthcare system. The Adjustments study explored how and why patients make self-initiated changes to their long-term medications without prior consultation with a healthcare professional, including the types of adjustments, underlying motivations, perceived consequences, and the decision-making tools they rely on. The Specchio-Adherence study assessed the impact of the COVID-19 pandemic on long-term medication adherence and access to care. Finally, the Nirmatrelvir/r study investigated patients’ self-management of nirmatrelvir/ritonavir prescribed for COVID-19, its influence on the management of concomitant long-term medications, and their experiences with the information delivered by pharmacists and physicians.
This thesis underscores the importance of understanding how patients self-manage long-term medications, taking into account their lived experiences, perceived needs, and daily routines. Patients frequently self-adjust their medications without professional support, revealing gaps in collaboration and a reluctance to discuss medication management with healthcare providers. This highlights the need for new strategies that promote consistent patient-centered communication and strengthen interprofessional collaboration in community settings. Clear definitions of the roles and responsibilities of patients, physicians, pharmacists, and nurses—as well as enhanced training in communication skills—are essential to support medication self-management. Strengthening the link between research and clinical practice, in close partnership with patients, will be crucial to better integrate their experiences and ensure the best possible use of healthcare services.
