Co-Creation of Patient-Centered Metrics for Long-Term Well-Being Involving People with HIV and HIV Care Providers

Achieving viral suppression alone does not fully resolve the multifaceted health challenges faced by people with HIV (PWH), such as early aging, multimorbidity, and low health-related quality of life. This co-creation pilot study to investigate patient-centered metrics for long-term well-being involved the development of a knowledge, attitudes, and practices survey through focus groups and its implementation among HIV care providers in Barcelona, Spain, in 2024. A collaborative approach of involving PWH from the community was essential in ensuring the relevance of the identified issues. The results underscored the importance of monitoring comorbidities such as mental health issues, cardiovascular diseases, and neurological disorders, alongside the use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). The findings highlighted several barriers to implementing PROMs, including time constraints, patient health literacy, and technical issues. Overall, the study emphasizes the need for health systems in Barcelona, Spain, to integrate PROMs and PREMs into routine HIV care to enhance patient-centered care and address the comprehensive well-being of PWH.