OBJECTIVES: We develop a study with the aim of explore in the patient journey throughout coverage schemes of young people and adults living with DM1 and their caregivers in the Chilean health system, both public and private.

METHODS: Case-study qualitative design was carried out, using the qualitative research approach. Online semi-structured interviews were conducted with patients, their caregivers and health professionals (n=29). Recruitment strategies included social networks, civil society organizations and health professionals, following a snowball technique. Interviews were conducted by trained facilitators following a standard thematic guideline. Thematic analysis was carried out. Study financed externally by Medtronic Chile.

RESULTS: Patient Journey identified by the interviewees goes from first symptoms to treatment phase. Difficulty in detecting first symptoms of DM1 is reported, especially in regions outside the Metropolitan area and rural sectors, both in public and private sector. The role of social networks in accessing information in this phase is highlighted. Regarding the debut of DM1, interviewees define this stage as a milestone of great impact, fear and uncertainty. Diagnosis phase is described as exhausting, and its reported that health teams in general are violent when communicating the diagnosis, which generates fear in patients and their families. Search for confirmation through social networks is also reported. Regarding treatment, patients report resistance to adapt to new treatments, including the insulin pump. They also account barriers for accessing the insulin pump, where socioeconomic and educational level is a determining variable leading to more access by private sector patients.

CONCLUSIONS: The study gives an overview of the patient journey throughout coverage schemes in DM1, identifying barriers and bottlenecks in the health system in the different stages of care of this disease. The results seek to contribute to improve the performance of the health system in DM1 and, thereby, improve life of patients and their families.