Understanding the burden of illness associated with hypoparathyroidism reported among patients in the PARADOX study.
OBJECTIVE
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.


METHODS
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.


RESULTS
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.


CONCLUSIONS
Patients with hypoparathyroidism have a high burden of illness and experience a broad spectrum of symptoms, with a multidimensional impact on their lives.
Trinity Partners, Waltham, Massachusetts.
Nandini
N
Hadker
Trinity Partners, Waltham, Massachusetts.
Jacqueline
J
Egan
Hypoparathyroidism Association, Inc., Idaho Falls, Idaho.
James
J
Sanders
NPS Pharmaceuticals, Inc., Bedminster, New Jersey.
Hjalmar
H
Lagast
Division of Endocrinology, Diabetes, Metabolism, & Nutrition, Mayo Clinic, Rochester, Minnesota.
Bart L
BL
Clarke
D000328:Adult; D000368:Aged; D017281:Cost of Illness; D004651:Employment; D005260:Female; D006801:Humans; D007011:Hypoparathyroidism / Q000191:economics* / Q000523:psychology; D008297:Male; D008875:Middle Aged; D011788:Quality of Life