http://www.raredr.com/news/most-clinician-do-not-understand-hypoparathyroidism
Patient Survey Reports 'Most Clinicians Do Not Understand Hypoparathyroidism'

RDR Staff


Hypoparathyroidism is a rare endocrine disorder due to the absence, or extremely low levels of parathyroid hormone (PTH).  Persons lacking PTH have problems maintaining homeostatic levels of calcium, magnesium, vitamin D, and phosphate.  hypocalcemia and hyperphosphatemia are the most commonly observed symptoms, which in turn can have numerous short and long term effects.
 
Those short and long term effects can lead to persons feeling burdened by the disease. To what extent they are burdened has only recently been documented however.
 
Hadker et al [1] recently published their study that analyzed the results of a web-based questionnaire answered by 374 adults with hypoparathyroidism. A sample of the results of that survey are shown below but readers are encouraged to obtain the complete study at http://aace.metapress.com/content/k5mn712445413k46/ 

Patient Demographics

Median Age   49.4 yrs
Female %       85%
Etiology
            78%    Surgical                    
            22%    Non-Surgical             
Severity
            21%    Mild                           
            48%    Moderate                  
            31%    Severe                      
Time since diagnosed
            3.5%    0.5 – 1 yr                   
            16%     1 – 3 yrs                    
            44%     4 – 10 yrs                  
            15%    11 – 19 yrs                
            21%    > 20 yrs                     
           
Medications
            66.6%    Calcium + Vit D         
            44.1%    Vit D capsules /liq     
            25.1%    Calcium alone               
            22.2%    Calcium + Magnesium      
            19.8%    Vit D tablets              
            19.5%    Magnesium                        
            15.0%    PTH                          
            08.3%    Muscle relaxant          

Main Findings

Physical Symptoms
             82%     Fatigue                                  
             78%     Muscle Pain/cramping             
             72%     Paresthesia                           
             70%     Tetany                                   
             67%     Joint / bone pain                    
             53%     Extremities discomfort           
Cognitive Symptoms
             72%     Mental lethargy                     
             65%     Problem concentrating          
             62%     Memory problems                 
             57%     Sleep disturbances               
Emotional Symptoms
             59%     Anxiety/fear                           
             53%     Depression/sad                     
 
In addition to the plethora of symptoms these patients have to endure, many patients feel the care they have, or are receiving, is inadequate.  Below  are some of  the statements in the questionnaire and the percentage of patients who agreed with it.
 
Most physicians do not understand hypoparathyroidism          
             79%     Strongly agree          
             16%     Neutral                      
             05%     Strongly agree          
I am concerned with the long-term effects of medications
             75%     Strongly agree          
             17%     Neutral                      
             08%     Strongly agree             
Hypoparathyroidism harder to control than doctor initially said
             63%     Strongly agree          
             22%     Neutral                      
             15%     Strongly agree          
 
The burden of hypoparathyroidism was also felt in terms of the persons being hospitalized (79%), inability to perform household activities (85%), and their employment (20%).
 
In the conclusion, the authors wrote “the extent of the negative impacts that hypoparathyroidism has on many facets of a typical adult’s health, well-being, and lifestyle, despite the use of the current standard of treatment, is the most striking result of this survey. The constant burden on patients’ overall well-being, coupled with the patients’ perceptions of how poorly their healthcare provider understands their condition, suggests that an ‘empathy gap’ exists.”
 
These disturbing results can be improved with better disease education and more research into improving how we manage and treat these patients.
 
Presently, there is no approved treatment for hypoparathyroidism and current management seeks to control symptoms with oral calcium and active vitamin D (calcitriol or alphacalcidol).  NPS Pharmaceuticals has filed a BLA for Natpara with the U.S. Food and Drug Admininstration (FDA).  A review of the Natpara BLA is scheduled for September 12, 2014 and a PDUFA Date is scheduled for October 24, 2014.
 

Reference

1. Hadker N, Egan J, Sanders J, Lagast H, Clarke BL.  Understanding the burden of illness associated with hypoparathyroidism reported among patients in the paradox study.  Endocr Pract 2014;20:671-679.
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