Development of an ICF Core Set for adults with Chagas disease: a qualitative study capturing patients’ perspective on functioning

BACKGROUND: Chagas disease affects multiple dimensions of human functioning, requiring assessments that extend beyond the biomedical model. The International Classification of Functioning, Disability and Health (ICF) offers an integrative framework for capturing these impacts. This qualitative study aimed to identify, from the perspective of adults diagnosed with Chagas disease, the aspects of functioning most relevant to them, as a step toward developing an ICF Core Set for this population. METHODS: Thirteen focus group discussions were conducted with adults diagnosed with Chagas disease, covering all ICF components. Two independent researchers extracted meaningful concepts from verbatim transcripts and linked them to ICF categories. RESULTS: Thirty-two adults with Chagas disease participated. From the discussions, 248 concepts were identified and linked to 49 second-level ICF categories: 13 related to body functions, 5 to body structures, 18 to activities and participation, and 13 to environmental factors. The most frequently mentioned categories were sleep, pain, emotional functions, and cardiac functions. In the Activities and Participation component, limitations were noted in household tasks, mobility, and social participation, with spirituality emerging as a key coping resource. For Environmental Factors, immediate family support and access to healthcare services were identified as primary facilitators of functioning. CONCLUSION: Adults with Chagas disease reported impairments across a wide range of body functions and activities, underscoring the significant influence of environmental factors. The identified categories will serve as a foundation of candidate items to support the consensus process for developing an ICF Core Set for adults with Chagas disease.