OBJECTIVES: FCS in Brazil is characterized by low clinical awareness that negatively affects the patient journey and experience, often resulting in inadequate care. Research addressing the FCS patient burden in Brazil could provide insights to refine healthcare services and improve outcomes. This is the first qualitative study in Brazil aimed to understand the burden of FCS in patients.

METHODS: In-depth face-to-face semi-structured interviews were conducted with eight patients (1 male/7 females, age range 40-55 years old) in June 2022. The interviews aimed to capture patients' journeys, and identify their needs, motivation and perspective about FCS in Brazil. Transcripts were analyzed thematically in an iterative process.

RESULTS: Eight patients commonly reported the following three life impact themes: psychological burden, medical problems, and interpersonal problems. Patients perceived that the greatest impact of FCS was on their emotional/mental well-being, with all 8 patients reporting depression. Medical/physical problems were described by patients and caregivers. All 8 patients experienced acute pancreatitis and reported severe abdominal pain. Diet was reported as a frequent source of anxiety by patients, preventing them from participating in social activities and interpersonal problems, including constraints in professional, personal, and financial life, stigmatization and a lack of understanding by others. Furthermore, two patients reported that living with FCS impacted their decision to have children, perhaps this is linked to the risk of complications from FCS during pregnancy. Socioeconomic factors were considered crucial to their psychological and interpersonal problems and adherence to a low-fat diet.

CONCLUSIONS: This first study in Brazil provides an understanding of the burden of FCS. Patients with FCS are affected by psychological, medical, and interpersonal problems, while the disease significantly impacts their socioeconomic life. These findings support the need for greater disease awareness for FCS and more economic impact studies on the disease in Brazil.