SAT-755 - U.N.M.E.T.: Understanding the Lived Experiences and Unmet Needs of Patients with Hypoparathyroidism - Baseline Findings from A Planned 10-Year Longitudinal Cohort

Background: Chronic hypoparathyroidism (HypoPT) is associated with substantial physical, cognitive, and psychosocial morbidity, yet large-scale real-world data on patient experiences and determinants of disease burden are limited. The U.N.M.E.T. study is the first phase of a 10-year longitudinal initiative addressing this gap.

Methods: Baseline data was collected via a global, web-based survey of adults with self-reported HypoPT. The 86-item questionnaire assessed demographics, diagnostic history, treatment, functional and psychosocial impact, and healthcare utilization. Multivariable regression analyses was conducted using SAS (v9.4) to examine associations between pre-diagnosis experiences, disease burden, and functional outcomes.

Results: Among 347 participants from 28 countries, 92.2% were female and 86.7% had post-surgical HypoPT. Fatigue (64.3%), cognitive dysfunction/brain fog (61.4%) and physical activity limitations (41.5%) were most impactful symptoms to participants, with 48–69% reporting high or severe interference of HypoPT across daily activities. Diagnostic challenges were common: 52% reported delayed or difficult diagnosis and 20% diagnosed following medical emergencies.
In the adjusted analysis, misdiagnosis prior to HypoPT diagnosis was independently associated with greater symptom burden (IRR 1.11, p=0.047), and higher crash-related anxiety and behavioral adaptation scores (crash-related distress) (β 1.24, p=0.0026), increased functional dependence (OR 1.82, p=0.044), and inability to work (OR 2.37, p=0.017). Symptom burden, acute care utilization, and difficulty managing symptoms on medication were strongly associated with worse crash-related distress (p < 0.001). Each 1-point increase in crash-related distress index was associated with 50% higher odds of being unable to work due to HypoPT (OR 1.50, p< 0.001) and 67% higher odds of functional dependence (OR 1.67, p< 0.001).
Complications were frequent, including arrhythmias (52.9%), kidney stones (38.0%), cataracts (37.0%), and CKD stage 3–4 (21.7%). Healthcare utilization was substantial: 42% had ≥1 ER visit for symptomatic “crashes” and only 37.8% achieved symptom control post IV calcium.
Treatment burden remained high: 49% took ≥7 pills/day and 50% struggled to maintain stable calcium levels.
Barriers to PTH-therapy included insurance denial (14.7%), clinicians unwilling to prescribe (13.4%), and country-level access issues.
The majority of participants (96.2%) expressed a strong desire for home calcium monitoring.

Conclusion: Baseline findings from U.N.M.E.T. study highlight substantial unmet needs across diagnosis, symptom control, functional outcomes, and treatment access. As the cohort transitions into longitudinal follow-up, the U.N.M.E.T. study will provide the first large, global, real-world evidence to inform patient-centered care.

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