Quality of life after idiopathic multicentric Castleman disease in China: a cross-sectional, multi-center survey of patient reported outcome and caregiver reported outcome
2024

Quality of Life in Patients with Idiopathic Multicentric Castleman Disease in China

Sample size: 178 publication 10 minutes Evidence: high

Author Information

Author(s): Chen Jia, Zhang Miao-yan, Gao Yu-han, Zhang Lu, Li Jian

Primary Institution: Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, China

Hypothesis

The study aims to assess the impact of idiopathic multicentric Castleman disease on quality of life, mental health, and caregiving burden.

Conclusion

Fatigue and depressive symptoms significantly impact the quality of life and social well-being of patients with idiopathic multicentric Castleman disease.

Supporting Evidence

  • Patients reported a median of nine symptoms, with fatigue being the most severe.
  • 65% of patients exhibited depressive symptoms, with 28.6% experiencing major depression.
  • Caregivers reported lower quality of life scores compared to the general population.

Takeaway

This study shows that people with a rare disease called idiopathic multicentric Castleman disease often feel very tired and sad, which makes their lives harder.

Methodology

A cross-sectional web-based survey was conducted with 178 patients and 82 caregivers using various self-administered questionnaires.

Potential Biases

Potential bias due to reliance on self-reported data from patients and caregivers.

Limitations

The study lacks longitudinal data to assess changes in patient-reported outcomes over time.

Participant Demographics

{"patients":{"median_age":43,"gender_distribution":{"male":95,"female":83}},"caregivers":{"median_age":42,"gender_distribution":{"male":32,"female":50}}}

Statistical Information

P-Value

p<0.001

Statistical Significance

p<0.001

Digital Object Identifier (DOI)

10.1186/s13023-024-03450-0

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