Context: Hypoparathyroidism (hypoPT) is a rare endocrine disorder. Little is known about what factors are associated with potential quality of life (QOL) impairments.
Design: HypoPT patients at a minimum of 6 months' post diagnosis were invited to participate in an online survey through their treating physician or through self-help organisations METHODS: Impairments of clinical importance in QOL were considered present if the score of the respective functioning scale of the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 exceeded a pre-defined threshold. Symptom burden was assessed using the HPQ-28. Multivariate logistic regression was used to identify factors associated with impairments in QOL.
Results: Data were available for 264 hypoPT patients. Impairments of clinical importance in QOL were reported for 40.4% in role functioning (RF), 40.6% in social functioning (SF), 60.8% in physical functioning (PF), 65.5% in cognitive functioning (CF) and 76.0% in emotional functioning (EF). Higher odds for reporting impaired QOL were seen for higher symptom burden (for almost all domains) and for being unable to work (for PF, RF and SF). Surgery for thyroid cancer being the cause of hypoPT was associated with lower odds in PF for patients and in PF and CF for patients with surgery for other thyroid-related diseases being the hypoPT cause.
Conclusions: HypoPT needs to be recognised as a disease which might be associated with impaired QOL and affect daily living. Symptom management is crucial for improving QOL in hypoPT patients but socioeconomic factors like work-ability need to be considered when treating hypoPT patients.
Keywords: EORTC QLQ-C30; hypoparathyroidism; impairments; parathyroid; quality of life; survey; well-being.
© 2022 The Authors. Clinical Endocrinology published by John Wiley & Sons Ltd.