QUALIDADE DE VIDA DE USUÁRIOS COM FIBROSE CÍSTICA: uma contribuição do Assistente Social

• DOI: https://doi.org/10.22533/at.ed.628112610027

• Palavras-chave: Determinantes Sociais da Saúde; Fibrose Cística; Qualidade de Vida; Serviço Social.

• Keywords: Social Determinants of Health; Cystic Fibrosis; Quality of Life; Social Service.

• Abstract: Cystic fibrosis is a rare, chronic and progressive genetic disease that requires continuous treatment, multidisciplinary monitoring and regular access to high-cost medications. In recent decades, therapeutic advances, especially with CFTR protein modulators, have significantly extended survival and improved clinical indicators. However, the quality of life of people with this disease cannot be understood solely based on biomedical outcomes, being strongly influenced by the social determinants of health, therapeutic adherence and access to public policies within the scope of the Unified Health System. This integrative review analyzed publications from the last ten years, with the aim of critically analyzing the quality of life of people with Cystic Fibrosis, in light of the effects of drug treatment, articulating the social determinants of health. The results show that factors such as income, education, family support and organization of the care network directly interfere with treatment adherence and clinical outcomes. Also noteworthy is the strategic intervention of the social worker in mediating access to rights, in intersectoral coordination and in strengthening comprehensive care. It is concluded that promoting quality of life in rare diseases requires an interdisciplinary approach, equity in access to public policies and critical action aimed at guaranteeing social rights.