Medical and Psychosocial Challenges Among Patients with Hypoparathyroidism in China: A Cross-Sectional Online Survey.

PURPOSE: Hypoparathyroidism (HypoPT) is a rare endocrine disorder that is seldom encountered in routine clinical practice, and patient-reported outcomes remain understudied in China. This study aimed to assess patient-perceived medical and psychosocial challenges among people with HypoPT in China.

PATIENTS AND

METHODS

In 2025, individuals with HypoPT in China were recruited through the WeChat platform to complete an online, non-probability cross-sectional survey. Collected data covered demographics, self-reported treatment regimens, frequency of treatment adjustment, treatment costs, self-reported symptom burden and complications, impact on work and daily life, the major challenges attributed to HypoPT, unmet treatment needs, and demand for medical resources.

RESULTS

A total of 146 respondents participated (104 completed by patients themselves and 42 by family members or guardians with the patient's consent). Over 60% of respondents had had their treatment plans adjusted; 27% reported not taking medications as prescribed, and 34% did not attend follow-up as recommended for diverse reasons. Many respondents reported persistent self-reported symptoms and medical complications, and 47% required care from family members or caregivers. The most prominent self-reported challenges included the need for lifelong medication (61%), significant impairment to physical functions (55%), and physical pain attributed to calcium deficiency and acute episodes (53%). Overall, 79% of respondents desired more effective drugs, and 55% hoped for more insurance/financial support and access to authoritative endocrinologists.

CONCLUSION

Respondents in this online survey reported substantial medical and psychosocial challenges. The findings highlight patient-perceived unmet needs-including more effective therapies, disease education, psychosocial support, and consideration of supportive health policies-and are hypothesis-generating, requiring confirmation in representative, multicenter studies with clinically verified diagnoses and validated patient-reported measures.