Burden of managing hypoparathyroidism medication regimens: a patient survey

Liz Glenister; Atiya Kenworthy; Ben Whitehouse; Anna Tran; Rosa Willock

doi:10.1530/endoabs.109.P82

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Endocrine Abstracts (2025) 109 P82 | DOI: 10.1530/endoabs.109.P82

SFEBES2025 Poster Presentations Bone and Calcium (25 abstracts)

Burden of managing hypoparathyroidism medication regimens: a patient survey

Liz Glenister ¹ , Atiya Kenworthy ² , Ben Whitehouse ² , Anna Tran ³ & Rosa Willock ³

Author affiliations

¹Parathyroid UK, East Grinstead, United Kingdom; ²Ascendis Pharma UK, London, United Kingdom; ³Decisive Consulting Ltd, Camberley, United Kingdom

Introduction: This project assessed the burden of managing hypoparathyroidism with a medication regimen of conventional therapy (oral calcium and/or active vitamin D) in the UK.

Methodology: An online cross-sectional patient survey was conducted in June 2024. Eligible respondents were adults (≥18 years) diagnosed with hypoparathyroidism persisting for ≥12 months and taking conventional therapy. Data collected included patient characteristics, medication regimens as well as the impact of managing this medication regimen and subsequent treatment satisfaction. Respondents were recruited via Parathyroid UK’s mailing list and data were aggregated and summarised using descriptive statistics.

Results: Of the 402 respondents, the majority (86.8%) were female, aged 36-55 years. Most were diagnosed post-surgery (72.4%) and took both oral calcium and active vitamin D (63.4%). Fewer than half of respondents reported satisfaction with their treatment regimen (44.1%). Treatment dissatisfaction was driven by poor communication with healthcare professionals (82.6%), concerns about long-term side effects (69.3%), and the burden of managing their medication regimen (55.1%).

Table 1. Medication regimen and treatment satisfaction
Medication Regimen	N (%)
Oral active vitamin D only	131 (32.6)
Oral calcium only	16 (4.0)
Both	255 (63.4)
Treatment Satisfaction
Dissatisfied or very dissatisfied	141 (35.1)
Neither	84 (20.9)
Satisfied or very satisfied	177 (44.1)

Table 2. Reasons for treatment dissatisfaction^a
	N (%)
Poor communication/lack of support from HCPs	186 (82.6)
Risk of long-term complications (eg heart and kidney) and side effects	156 (69.3)
Burden of managing medication regimen	124 (55.1)
Other	102 (45.4)
^aCompleted by respondents ‘dissatisfied/very dissatisfied’ or ‘neither’ (n = 225)

Conclusion: These results show that adults with hypoparathyroidism have evident treatment dissatisfaction, partly driven by the burden of managing their medication regimen. These results suggest that programmes to improve physician communication on hypoparathyroidism should be considered and highlight the need for an effective and safe treatment with reduced risk of long-term complications.