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

The majority of multicentric Castleman disease (MCD) patients in China are of the idiopathic subtype (iMCD) with systemic manifestations. However, the impact of iMCD on life quality, mental and psychological status, social function, and caregiving burden is poorly understood. To address this gap, a cross-sectional web-based survey was conducted with 178 iMCD patients and 82 caregivers, including 42 patient-caregiver dyads. Patient-reported outcome measurements were performed using four self-administered questionnaires (MCD-SS, SF-36, PHQ-9, and WPAI:GH). Caregiver-reported outcome measurements were performed using three questionnaires (SF-36, Zarit-22, CRA) to assess the caregiving burden. Correlation analysis was performed in patient-caregiver dyads. Patients reported a median of nine symptoms by MCD-SS, with a high mean score of 4.34 for the Fatigue domain. Their SF-36 scores indicated significant declines in physical and mental health compared to the Chinese general population (p < 0.001). Based on PHQ-9, around 65% of patients exhibited depressive symptoms, with 28.6% of them experiencing mild to severe major depression. Only 47.2% (84/178) of the patients were employed, and 28.5% experienced impaired work time. Caregivers also reported lower SF-36 scores than the general population (p < 0.05) and expressed feeling of self-criticism, lack of family support and financial problems. Correlations were observed between patients' symptom burden, mental health impairment and caregiving burden (correlation coefficient: 0.31 ~ 0.55). Our study concluded that fatigue and depressive symptoms significantly impact the life quality and social well-being of iMCD patients. The disease also affect the physical and mental health of caregivers, leading to feelings of guilt and a lack of family support.