Challenges and opportunities in monitoring the long-term well-being of people with HIV in Spain

Abstract

Background Thanks to antiretroviral therapy, people living with HIV have an increased life expectancy, but face multimorbidity challenges while ageing. This study aimed to evaluate the monitoring capabilities of Spain’s subnational and national health information systems in addressing the multimorbidity needs of people with HIV (PHIV). Methods Employing 7 semi-structured focus groups discussions of 20 total participants through purposive sampling of relevant professional profiles recruited by the Spanish Interdisciplinary AIDS Society (SEISIDA), we thematically analysed the discussions using two theoretical frameworks: the World Health Organization health systems building blocks and the DeLone and McLean Information Systems Success Model. Content was validated via participant follow-up and triangulation with publicly available data. Results Participant feedback revealed ongoing challenges and capacities within the Spanish health information system for collecting, reporting, and using multimorbidity information among PHIV, including gaps in systematic monitoring of comorbidities, including mental health, technical and interoperability challenges in health data systems, and the need for improved data collection and coordination strategies. Conclusion Our findings underscore the importance of a comprehensive approach to health monitoring for chronic care management and the critical role of data standardization and systematization towards improved patient care and public health goal-setting.