FH China releases 2025 Report of Psychosocial Status in individuals with HoFH

On September 20, at the inaugural FH Conference, the 2025 Report of Psychosocial Status in individuals with HoFH was officially released. The study was jointly conducted by Homy FH China Patient Network and Associate Professor Zhang Yudi from the Department of Sociology at the University of Science and Technology Beijing. September 24 marks International FH Awareness Day, on which the electronic version of the report became publicly available for download.

Due to low public awareness of HoFH and frequent medical interventions, patients often face misunderstanding, discrimination, and feelings of shame. Early-onset cardiovascular complications associated with HoFH can significantly impair physical functioning and restrict social roles, negatively affecting patients' life satisfaction. Moreover, the severe health threats patients may encounter from an early age often prompt deep reflections on the value and meaning of life.

Based on the lived experiences of HoFH patients, this study selected three dimensions—stigma, life satisfaction, and sense of meaning in life—to assess psychosocial adaptation. A quantitative research approach was employed to explore the current status and internal/external influencing factors of psychosocial adaptation among HoFH patients. Using convenience sampling, adult HoFH patients registered with the Homy patient organization were recruited, and a total of 31 valid responses were collected.

Key findings include:

• Overall psychosocial adaptation among HoFH patients is relatively low.

• Levels of perceived stigma are high, with internalized stigma exceeding external stigma, indicating a tendency toward self-stigmatization.

• Life satisfaction is at a level of "slightly dissatisfied."

• Sense of meaning in life is higher compared to other chronic disease populations.