Health‐related quality of life in patients with nonsurgical hypoparathyroidism and pseudohypoparathyroidism

Underbjerg, Line; Sikjær, Tanja; Rejnmark, Lars

doi:10.1111/cen.13593

Cited by 30 publications

(30 citation statements)

References 30 publications

(75 reference statements)

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“…In recent years, the burden of illness in HP has been clearly demonstrated . In addition to reduced health‐related quality of life and self‐reported symptoms including fatigue, paraesthesia, brain fog and memory loss , the studies have also shown increased risk of kidney failure, infections and psychiatric disorders . In accordance with these studies, we found that a large proportion of HP patients have been hospitalized due to a crisis, most commonly due to hypocalcaemia, whilst hospitalizations for acute hypercalcemia are relatively rare.…”

Section: Discussionsupporting

confidence: 80%

Is there a need for an emergency card in hypoparathyroidism?

et al. 2018

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Is there a need for an emergency card in hypoparathyroidism?. J Intern Med 2019; 285: 429-435.Background. Patients with hypoparathyroidism are at risk of both hypocalcemic and hypercalcemic crisis. Patients report that health professionals do not always respond adequately in an acute situation. The extent and handling of severe hypo-and hypercalcemia in hypoparathyroidism is unknown.Aims. To outline the need for a medical emergency card for primary hypoparathyroidism.Method. Postal survey amongst Norwegian and Swedish patients with chronic hypoparathyroidism of all causes. Altogether 455 invitations were sent (333 from Norway and 122 from Sweden).Results. Three hundred and thirty-six of 455 (74%) patients responded (253 from Norway and 83 from Sweden). The majority were women (79%), and the main cause was postsurgical hypoparathyroidism (66%). Overall 44% and 16% had been hospitalized at least once for hypo-or hypercalcemia, respectively. Eighty-seven per cent felt that an emergency card would be highly needed or useful. Amongst those hospitalized for hypocalcemia, 95% felt a card was needed compared to 90% amongst those hospitalized for hypercalcemia. Five per cent believed that a card would not be useful.Conclusions. The majority answered that an acute card is highly needed or useful. Hospitalization for acute hypocalcemia was more common (44-%) than for acute hypercalcemia (16%). As a result of this survey, an emergency card will be distributed in three European countries to test its utility.

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Section: Discussionsupporting

confidence: 80%

Is there a need for an emergency card in hypoparathyroidism?

et al. 2018

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“…Complaints of paraesthesia and/or cramps in the past month were present in 3 out of 20 cases. Well-being was not being assessed in this study, but previous data showed failure to restore well-being in patients with HP with standard therapy of calcium and vitamin D (18,19). Therapy with rhPTH 1-84 may help to improve the quality of life in these patients (20).…”

Section: Discussionmentioning

confidence: 86%

Long-term complications in patients with chronic hypoparathyroidism: a cross-sectional study

David

Moyson

Vanderschueren

et al. 2019

European Journal of Endocrinology

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Objective: Chronic hypoparathyroidism and its treatment may lead to symptoms and complications affecting quality of life. We determined complications in chronic hypoparathyroid patients. Design: Retrospective cross-sectional study of patients with chronic hypoparathyroidism treated with active vitamin D supplements in a tertiary care centre during the year 2015. Primary outcome parameters were history of kidney stones and seizures and presence of renal and cerebral calcifications on imaging. Secondary outcome parameters were current symptoms of paraesthesia/cramps, hospitalization due to hyper/hypocalcaemia and hypercalciuria. Subjects: One hundred and seventy patients were included -143 (84%) with post-surgical hypoparathyroidism (PSHP), 16 (9%) with non-surgical hypoparathyroidism (NSHP) and 11 (7%) with pseudo-hypoparathyroidism (PHP). Results: History of kidney stones and seizures was present in 15 and 9% of patients, respectively. Renal and cerebral imaging was performed in 51 and 26% of the patients, with 22 and 25% of these patients having renal and cerebral calcifications respectively. Both history of seizures and cerebral calcifications were significantly more in NSHP and PHP than in PSHP patients. No association was observed between seizures and cerebral calcifications. Cramps/paraesthesia were present in 16%, and hospitalization related to hypocalcaemia was reported in 5% of the patients. Calciuria was screened in 47% at the time of consultation, and in 76% of the patients during the past 5 years. In 36% of these patients, calciuria was increased. Conclusions: Patients with chronic hypoparathyroidism frequently develop ectopic calcifications. Non-surgical patients suffer more from seizures and cerebral calcifications than patients that developed hypoparathyroidism post surgery. There is a need for increased screening of long-term complications, according to the guidelines.

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“…From a therapeutic aspect, HypoPT is the last endocrine deficiency syndrome not replaced by the lacking hormone in standard care (7, 66). The indirect standard treatment or an un-physiologic substitution therapy might give challenges affecting quality of life (QoL) for the patients but also potential long-term complications (6, 67, 68, 69, 70, 71).…”

Section: Chronic Hypoparathyroidism In Adultsmentioning

confidence: 99%

“…In a number of chronic diseases, quality of life (QoL) of the patients is supposed to be a hallmark of therapy (86, 87, 88) and is regarded as essential also for HypoPT patients by the ESE evidence-based guideline (7). Several instruments for the characterization of QoL in HypoPT patients were used, including the Short Form-36 (SF-36), the Hospital Anxiety and Depression Scale (HADS) and the WHO-5 Well-Being Index survey (WHO-5) (6, 68, 70, 71, 85). These different questionnaires revealed large deviations from the norms observed in the general population (6, 68, 85).…”

Section: Chronic Hypoparathyroidism In Adultsmentioning

confidence: 99%

Unmet therapeutic, educational and scientific needs in parathyroid disorders: Consensus Statement from the first European Society of Endocrinology Workshop (PARAT)

Bollerslev

Schalin‐Jäntti

Rejnmark

et al. 2019

European Journal of Endocrinology

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PARAT, a new European Society of Endocrinology program, aims to identify unmet scientific and educational needs of parathyroid disorders, such as primary hyperparathyroidism (PHPT), including parathyroid cancer (PC), and hypoparathyroidism (HypoPT). The discussions and consensus statements from the first PARAT workshop (September 2018) are reviewed. PHPT has a high prevalence in Western communities, yet evidence is sparse concerning the natural history and whether morbidity and long-term outcomes are related to hypercalcemia or plasma PTH concentrations or both. Cardiovascular mortality and prevalence of low energy fractures are increased, whereas quality of life is decreased, although their reversibility by treatment of PHPT has not been convincingly demonstrated. PC is a rare cause of PHPT, with increasing incidence, and international collaborative studies are required to advance knowledge of the genetic mechanisms, biomarkers for disease activity and optimal treatments. For example, ~20% of PCs demonstrate high mutational burden, and identifying targetable DNA variations, gene amplifications and gene fusions may facilitate personalized care, such as different forms of immunotherapy or targeted therapy. HypoPT, a designated orphan disease, is associated with a high risk of symptoms and complications. Most cases are secondary to neck surgery. However, there is a need to better understand the relation between disease biomarkers and intellectual function and to establish the role of PTH in target tissues, as these may facilitate the appropriate use of PTH substitution therapy. Management of parathyroid disorders is challenging, and PARAT has highlighted the need for international transdisciplinary scientific and educational studies in advancing in this field.

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Health‐related quality of life in patients with nonsurgical hypoparathyroidism and pseudohypoparathyroidism

Abstract: QoL is impaired equally among patients with Ns-HypoPT and PHP.

Cited by 30 publications

References 30 publications

Is there a need for an emergency card in hypoparathyroidism?

Is there a need for an emergency card in hypoparathyroidism?

Long-term complications in patients with chronic hypoparathyroidism: a cross-sectional study

Unmet therapeutic, educational and scientific needs in parathyroid disorders: Consensus Statement from the first European Society of Endocrinology Workshop (PARAT)

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