Understanding the Burden of Illness Associated with Hypoparathyroidism Reported Among Patients in the Paradox Study
| Autor: | Jacqueline Egan, Bart L. Clarke, Hjalmar Lagast, Nandini Hadker, James Sanders |
|---|---|
| Rok vydání: | 2014 |
| Předmět: |
Adult
Employment Male endocrine system medicine.medical_specialty Pediatrics endocrine system diseases Hypoparathyroidism Endocrinology Diabetes and Metabolism Parathyroid hormone Hyperphosphatemia Endocrinology Cost of Illness Quality of life Cost of illness Humans Medicine Intensive care medicine Aged business.industry nutritional and metabolic diseases General Medicine Middle Aged medicine.disease Quality of Life Female business hormones hormone substitutes and hormone antagonists Rare disease |
| Zdroj: | Endocrine Practice. 20:671-679 |
| ISSN: | 1530-891X |
| DOI: | 10.4158/ep13328.or |
| Popis: | Hypoparathyroidism is a rare disease caused by lack of parathyroid hormone (PTH) leading to hypocalcemia, hyperphosphatemia, and a variety of symptoms. This study aimed to quantify the clinical and social burden of illness from the perspective of affected patients.A web-based instrument was developed with input from patients, clinical experts, and the Hypoparathyroidism Association. Qualifying participants were ≥18 years old, diagnosed with hypoparathyroidism for ≥6 months, and U.S. residents. Questions focused on demographics, diagnosis perceptions, current attitudes, medical management, current symptoms, acute episodes, comorbidities, personal life, and employment.A total of 374 adults (mean age, 49 ± 12 years; female, 85%) with hypoparathyroidism (mean duration, 13 ± 12 years; severe condition, 30.5%) completed the survey. Patients reported visiting a mean of 6 ± 8 physicians before and after their diagnosis. The majority strongly agreed with feeling unprepared to manage the condition at diagnosis (56%), that controlling their hypoparathyroidism is harder than expected (60%), and that they were concerned about long-term complications of their current medications (75%). More than 10 symptoms were experienced by 72% of patients in the preceding 12 months, despite current management regimens. Symptoms were experienced for a mean of 13 ± 9 hours/day. Hospital stays or emergency department visits were required by 79% of patients. 45% reported significant interference with their lives, 85% reported an inability to perform household activities, and 20% experienced a disease-associated change in employment status.Patients with hypoparathyroidism have a high burden of illness and experience a broad spectrum of symptoms, with a multidimensional impact on their lives. |
| Databáze: | OpenAIRE |
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