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Endocrine Oncology, Pituitary Disorders
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The Imprecise Interpretation of ‘Clinically Significant’ Pituitary Tumors

Published Online: June 6th 2011 US Endocrinology, 2008;4(1):91 DOI: http://doi.org/10.17925/USE.2008.04.01.91
Authors: Lewis S Blevins, Robert Knutzen
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A regrettable and deliberately vague definition of ‘clinically significant’ in relation to pituitary adenomas is stubbornly clinging to daily medical practice, causing irreparable harm to patients, families, and society in general. No-one is well served by language so vague that neither diagnosis nor treatment plans are possible and generations of treatable (repairable) patients are lost to themselves, their families, employers, and partners, and society at large.

A regrettable and deliberately vague definition of ‘clinically significant’ in relation to pituitary adenomas is stubbornly clinging to daily medical practice, causing irreparable harm to patients, families, and society in general. No-one is well served by language so vague that neither diagnosis nor treatment plans are possible and generations of treatable (repairable) patients are lost to themselves, their families, employers, and partners, and society at large. The financial cost alone of slowly struggling one’s way through a costly and woefully unprepared medical system and being treated for a wide array of symptoms without seeing an accurate diagnosis of the underlying disease(s)/ disorder(s) is staggering and, these days, inexcusable. The total number of pituitary adenomas alone is amazingly high, yet the number of identified, diagnosed patients is alarmingly low. The most obvious culprit responsible for this discrepancy is language: failure to define and clearly classify the true symptoms of underlying pituitary tumors confuses the average family caregiver, insurance companies, employers, and families, resulting in despair, grief, anger, financial ruin, and destroyed family units.

In general medicine, clinically significant is defined (by the Australian Medical Association) as follows: “A judgment made by a clinician that something is clinically important for that particular patient in the context of that patient’s healthcare. The judgment may be that something is abnormal and therefore clinically important for that particular patient, or it could be something that is normal, but is clinically important for that particular patient.” However, this quote does not settle the critical part of the whole question: what is clinically important? Examples abound within pituitary endocrinology, but the failure to connect the dots or link the symptoms to a specific disorder or disease can turn a possible morbidity into a certain mortality. For example, around half of all medical practitioners define headaches as unrelated to a pituitary tumour. Neither is a pituitary tumour recognized as a possible cause of bilateral carpal tunnel syndrome; instead, a series of non-consequential explanations are given, all of which overlook the possibility of an underlying tumor. As acromegaly is so ‘rare,’ it is not acknowledged as a possible cause of lack of libido, milk discharge, or enlarging hands and feet; instead, old age, stress, premature menopause— any number of reasons—are hypothesized, none of which are remotely linked to growth hormone excess. However, the cost of a simple blood test to rule out (or in) acromegaly is only approximately $40. The list can go on and on, yet the basic question of what is clinically significant remains unanswered. To a medical professional who loathes the idea of enquiring into a patient’s sex life—erectile dysfunction, dyspareunia, lack of libido, inability to ejaculate, infrequent menses—it is never discovered that the patient has these symptoms in the first place, as the interview does not go into that forbidden but oh-so-vital medical territory. The examples are so many and so far-ranging that it becomes both impractical and unfeasible to list each one. However, the refusal of healthcare practitioners to link even the most fundamental failures of the human physical condition to a hormonal or even more specific pituitary failure renders the discussion of what is clinically significant almost moot.

One would assume that each specialty and sub-specialty in medicine has designed/devised its own shorthand definition of clinically significant depending on which part of the anatomy/physiology is being examined. Sadly, in no way is this an excusable approach to a diagnosis or, worse, a misdiagnosis of a pituitary patient. Using the simplest example, a patient’s fever or glassy eyes may just as easily result from an infected foot as an intestinal disorder. Failure to pursue the symptom(s) presented to its/their root cause unfortunately borders on bad or misplaced medical knowledge, but the very same symptoms may be well known to and thus pursued to a satisfactory diagnosis by a pituitary endocrinologist, for instance. Merely listening to the patient without the requisite knowledge of the subject matter may in fact be an unwelcome use of the professional’s time and the patient’s financial wherewithal, especially if no satisfactory medical conclusion is reached. Although the art of listening and the ability to empathize are enormously valuable tools in a good physician’s armamentarium, nothing takes the place of subject knowledge or, at least, a level of educated suspicion. Since the number of people living with pituitary/hormonal disorders is high—one in five at the latest estimate—it must be understood that pituitary diseases are slow but most often relentless in their growth and disease progression. Listening alone may not be the best medical response. However, ‘think–test–treat one in five’ may be a useful roadmap to the diagnosis of diseases that we know are present but too often unrecognized.■

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