Burden of illness in not adequately controlled chronic hypoparathyroidism: Findings from a 13‐country patient and caregiver survey

Abstract

ObjectiveTo address knowledge gaps regarding burdens associated with not adequately controlled chronic hypoparathyroidism.DesignGlobal patient and caregiver survey.Study PopulationsPatients with chronic hypoparathyroidism not adequately controlled on conventional therapy and their caregivers.MeasurementsHealth‐related quality of life (HRQoL) and health status were evaluated using the 36‐item Short Form version 2 (SF‐36 v2.0) and Five‐Level EuroQoL 5 Dimensions (EQ‐5D‐5L) instruments, respectively. Hypoparathyroidism‐associated symptoms were assessed by a disease‐specific Hypoparathyroidism Symptom Diary and caregiver burden via the Modified Caregiver Strain Index (MCSI).ResultsData were obtained from 398 patients and 207 caregivers. Patients' self‐rated hypoparathyroidism‐related symptom severity was none (3%), mild (32%), moderate (53%) or severe (12%). Per the Hypoparathyroidism Symptom Diary, patients reported moderate, severe or very severe symptoms of physical fatigue (73%), muscle cramps (55%), heaviness in limbs (55%) and tingling (51%) over a 7‐day recall period. Impacts (rated ‘somewhat’ or ‘very much’) were reported by 84% of patients for ability to exercise, 78% for sleep, 75% for ability to work and 63% for family relationships. Inverse relationships were observed between patient self‐rated overall symptom severity and HRQoL and health status assessment scores—the greater the symptom severity, the lower the SF‐36 and EQ‐5D‐5L scores. Caregiver burden increased with patient self‐rated symptom severity: none, 1.7 MCSI; mild, 5.4 MCSI; moderate, 9.5 MCSI; and severe, 12.5 MCSI.ConclusionPatients with not adequately controlled hypoparathyroidism reported substantial symptoms and impacts. Greater patient symptom severity was associated with decreased patient HRQoL and health status assessments and increased caregiver burden.

Etiology and Diagnosis of Permanent Hypoparathyroidism after Total Thyroidectomy

“…Post-thyroidectomy parathyroid failure is currently regarded as the most common complication of total thyroidectomy and the first cause of return to hospital after discharge [ 25 ]. The crippling nature of permanent postoperative hypoparathyroidism has been widely recognized [ 1 , 2 , 26 , 27 ]. However, surgeons are quite reluctant to accept the idea that parathyroid injury is, essentially, a technical issue.…”

“…Between 75% and 85% of all cases of permanent hypoparathyroidism result from neck surgery, mostly from total thyroidectomy, particularly if performed for cancer. Although the biochemical and clinical profiles of permanent hypoparathyroidism are currently well known [ 1 , 2 ], there is some lack of knowledge on the causes of postoperative parathyroid insufficiency and the dynamics of hypoparathyroidism from the early postoperative stages to recovery of the parathyroid function or, else, to permanent dependency on replacement therapy.…”

MANAGEMENT OF ENDOCRINE DISEASE: Postsurgical hypoparathyroidism: current treatments and future prospects for parathyroid allotransplantation

“…The burden of the disease on individual patients extends to their carers, and this amplifies the impact on health services. In a study of 398 patients with chronic hypoPT not adequately controlled on conventional therapy and 207 caregivers, caregivers’ burden increased with patients’ self-rated symptom severity ( 10 ).…”

Behandlung des postoperativen Hypoparathyreoidismus

“…Die Patienten klagen über Depressionen und Angststörungen und berichten Konzentrations-und Gedächtnisstörungen. Auch das Arbeits-und Sozialleben kann durch die Erkrankung beeinträchtigt sein als Ausdruck einer relevanten Gesundheitsbelastung [10]. Mitursächlich können dabei intrazerebrale Kalzifizierungen sein, die durch das ungünstige Kalzium-Phosphat-Verhältnis entstehen [11].…”