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Войти в исследования Journal of multidisciplinary healthcare · 2026
Medical and Psychosocial Challenges Among Patients with Hypoparathyroidism in China: A Cross-Sectional Online Survey.
СтатьяНазвание и аннотация: Перевод пока не подготовлен
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Zhong Xueyu, Zheng Wenbin, He Qingxin, Xia Wenfang
Аннотация
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.
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.