Evidence map›Paper›PMID 31721256›Full record

ArticleClinical endocrinology2020

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

Heide Siggelkow, Bart L Clarke, John Germak, Claudio Marelli, Kristina Chen, Helen Dahl-Hansen, Elizabeth Glenister, Nawal Bent-Ennakhil, Davneet Judge, Katie Mycock and 1 more

Open access · hybridAbstract readMulticenter Study
In one paragraph

Article in Clinical endocrinology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
37citing papers in PubMed, 1 pooled it
4.9field-weighted citation impact, top 4% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

37 citing papers in PubMed, 1 synthesis or guideline pooled it, 50 citations in OpenAlex.

  1. Etiology and Pathophysiology of Hypoparathyroidism: A Narrative Review.Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research · 2022
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  5. Efficacy and Safety of Parathyroid Hormone Replacement With TransCon PTH in Hypoparathyroidism: 26-Week Results From the Phase 3 PaTHway Trial.Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research · 2023
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  8. EndoBridge 2025: pearls and highlights.Hormones (Athens, Greece) · 2026
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors at 6 institutions in 5 countries.

Heide SiggelkowClinic of Gastroenterology and Endocrinology, University of Göttingen, Göttingen, Germany.ORCID 0000-0002-8366-8625
Bart L ClarkeMayo Clinic Division of Endocrinology, Diabetes, Metabolism, and Nutrition, Rochester, MN, USA.
John GermakShire International GmbH, a member of the Takeda group of companies, Zug, Switzerland.
Claudio MarelliShire International GmbH, a member of the Takeda group of companies, Zug, Switzerland.
Kristina ChenShire Human Genetic Therapies, Inc., a member of the Takeda group of companies, Cambridge, MA, USA.ORCID 0000-0003-3428-9570
Helen Dahl-HansenhypoPARA NORGE, Vettre, Norway.
Elizabeth GlenisterHypopara UK, East Grinstead, UK.
Nawal Bent-EnnakhilAdelphi Real-World, Adelphi Mill, Bollington, UK.
Davneet JudgeAdelphi Real-World, Adelphi Mill, Bollington, UK.
Katie MycockAdelphi Real-World, Adelphi Mill, Bollington, UK.
Jens BollerslevSection of Specialized Endocrinology, Oslo University Hospital, Oslo, Norway.
Adelphi Group (United Kingdom) · GBTakeda (Switzerland) · CHMayo Clinic in Arizona · USOslo University Hospital · NOTakeda (United States) · USUniversity of Göttingen · DE

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveTo address knowledge gaps regarding burdens associated with not adequately controlled chronic hypoparathyroidism.

designGlobal patient and caregiver survey. STUDY POPULATIONS: Patients with chronic hypoparathyroidism not adequately controlled on conventional therapy and their caregivers. MEASUREMENTS: Health-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.

Indexed as

CaregiversCost of IllnessQuality of LifeAdultAgedCaregiver BurdenChronic DiseaseFemaleHealth StatusHumansHypoparathyroidismMaleMiddle AgedParathyroid HormoneStress, PsychologicalSurveys and QuestionnairesParathyroid HormonePTH protein, humancaregiverhealth statushypoparathyroidismparathyroid hormonepatientquality of lifesurveys and questionnaires

Identifiers

PMID31721256
PMCPMC7027891
OpenAlexW2985255728

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.