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A Delphi panel in the UK to define patients with chronic hypoparathyroidism ‘not adequately controlled on standard therapy’
Abstract
Chronic hypoparathyroidism (HypoPT) is a rare endocrine condition characterised by hypocalcaemia and deficient or absent parathyroid hormone. The recent European Society of Endocrinology Guidelines outline recommendations for treatment and monitoring of chronic HypoPT in adults. A Delphi panel was conducted to agree upon the characteristics that define ‘not adequately controlled on standard therapy’ where this relates to patients with chronic HypoPT.
A Delphi panel was carried out initially via face-to-face interviews and subsequently via electronic questionnaires. Three rounds of questions and controlled panellist feedback were given to a panel (N=10) of HypoPT UK clinical experts. At each round, panellists were asked to consider ‘not adequately controlled on standard therapy’ according to three different patient presentations; (1) ‘abnormal’ biochemical levels but presenting ‘well’, (2) ‘normal’ biochemical levels, presenting as ‘unwell’, (3) ‘abnormal’ biochemical levels, presenting as ‘unwell’. Panellists rated the importance of fifty-five variables (‘characteristics’), previously identified from the literature, and grouped according to patient characteristics, biochemical levels, HypoPT comorbidities and patient reported symptoms. Consensus was considered as reached when ≥80% of panellists agreed upon the importance level of a variable.
Across the three patient presentations, several variables reached consensus. Patient presentation 1 found the most important variables were biochemical levels and HypoPT comorbidities. Patient presentation 2 found the most important variables were those describing patient reported symptoms (e.g. ‘tingling or numbness’). For patient presentation 3, the variables that described biochemical levels, HypoPT comorbidities, and patient reported symptoms were all deemed important for characterising these patients.
This study is a first step to understanding the characteristics considered important by UK clinical experts for defining patients with chronic HypoPT, that are ‘not adequately controlled on standard therapy’ according to their different presentations. The list of characteristics derived should now be tested by UK clinicians for their applicability in clinical practice
Authors
A Rylands, K Patel, N Dass, K Iqbal
Journal
Endocrine Abstracts
Therapeutic Area
Endocrinology and metabolism
Center of Excellence
Patient-Centered outcomes
Year
2017
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