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

Area of Science:

• Public Health
• Rehabilitation Medicine
• Social Sciences

Background:

• Chagas disease impacts multiple life dimensions beyond the biomedical scope.
• The International Classification of Functioning, Disability and Health (ICF) provides a framework for assessing these impacts.
• Current assessments need to encompass the holistic experience of individuals with Chagas disease.

Purpose of the Study:

• To identify aspects of functioning most relevant to adults diagnosed with Chagas disease.
• To lay the groundwork for developing an ICF Core Set tailored to this population.
• To capture the lived experiences of Chagas disease patients regarding their functioning.

Main Methods:

• Qualitative study involving thirteen focus group discussions with adults diagnosed with Chagas disease.
• Exploration of all components of the International Classification of Functioning, Disability and Health (ICF).
• Independent extraction and linkage of meaningful concepts from verbatim transcripts to ICF categories by two researchers.

Main Results:

• 248 concepts linked to 49 second-level ICF categories were identified from 32 participants.
• Frequently mentioned categories included sleep, pain, emotional, and cardiac functions.
• Limitations in activities and participation (household tasks, mobility, social participation) were reported, with spirituality as a coping resource. Family support and healthcare access were key environmental factors.

Conclusions:

• Adults with Chagas disease experience impairments across body functions and activities, significantly influenced by environmental factors.
• The identified ICF categories form a basis for developing a consensus-based ICF Core Set for this population.
• This research highlights the need for a comprehensive, ICF-based approach to managing Chagas disease.