The annual European Congress of Endocrinology (European Society of Endocrinology) 2014 was held this year in historic Wroclaw, Poland in May 2014. Congress attendees represented countries and nations from around the globe. The Congress included many excellent speakers who addressed various topics related to Cushing’s syndrome. These are too numerous to cover in detail, so a brief summary of some highlights follows. 

In a breakout symposium on Cushing’s syndrome that was standing room only, Dr. Dekkers (The Netherlands) reviewed findings from the literature about increased mortality in patients after cure of Cushing’s due to long-term negative metabolic effects. Of course, these findings have significant implications for long-term follow-up of affected patients. In addition, these preliminary data highlight the need for future research to address management and treatment options.  Dr. Helen Storr (UK) discussed the diagnostic and post-treatment challenges in pediatric Cushing’s. Lastly, Dr. Findling (USA) provided an update regarding the complexities and nuances of medical therapy in the management of persistent or recurrent Cushing’s syndrome.  Pharmacologic treatments that block cortisol synthesis or action are associated with significant side effects; however a couple of new agents are being evaluated in clinical trials (i.e., LC1699).

Another oral session highlight related to Cushing’s syndrome was Dr. Beverly Biller’s (USA) presentation on the on-going study of an 11β-hydroxylase inhibitor (LC1699) in patients with Cushing’s disease. The interim analysis demonstrated that 22 weeks of treatment reduced urine free cortisol in patients with Cushing’s disease, with good tolerability. In a session titled, ‘Good times, bad times: (patho)physiology of diurnal rhythms,’ Dr. van der Horst (The Netherlands) presented findings from pre-clinical and clinical studies, which provide evidence to support that alterations in diurnal rhythms are associated with an increased risk for developing pathologies. He reviewed the etiology/pathophysiology as well as implications for treatment and prevention of medical complications associated with atypical diurnal rhythm. The session about the ‘Year in the Adrenals’ highlighted recently published findings on: the mechanisms of disease in ACTH-independent macronodular adrenal hyperplasia and sporadic cortisol producing adenomas and beneficial outcome of bilateral adrenalectomy for refractory Cushing’s disease. Dr. Buning (The Netherlands) presented findings of a study that was designed to investigate the effect of hydrocortisone replacement regimen (low (0.2- 0.3mg/kg/day) versus high (0.4- 0.6mg/kg/day) physiologic) on cognition in patients affected with secondary adrenal insufficiency. After 10 weeks, higher physiological replacement doses had a negative influence on measures of short-term memory and attention compared to a lower dose.

There were several oral sessions about the molecular pathogenesis of adrenal and pituitary tumors; topics that are taking the forefront in clinical research due to advances in molecular and genetic techniques. 

The European Congress of Endocrinology included a Nursing symposium that provided an exciting opportunity for international collaboration.  There was a panel presentation about craniopharyngioma, Dr. Mueller (Germany) reviewed medical management, Kathy Clark, CRNP (USA) presented the nursing role in the care of the patient, and Dr. Jackson (UK) discussed the psychological aspects of living with a pituitary-related condition.  This format was very effective in providing a comprehensive approach to a patient affected with an endocrine disorder.

The nursing symposium also included an interactive session with patient support groups, which was very informative. Representatives from the Dutch Addison and Cushing Society and the UK and International Turner Syndrome Support Society gave thought-provoking presentations about how patient support groups work with healthcare providers and patients to improve patient care and health reported outcomes.   In addition, an opportunity was provided for patient support group representatives to describe their group, how they communicate with their members, and what activities they do, etc.  This was a unique opportunity for patient support groups to network with conference attendees.  The attendees identified the need for cross-country collaborations to share and implement best practices.

The patient support groups represented at the nursing symposium included: Cushing Support and Research Foundation (USA), UK Pituitary Foundation, Nezwerk-Hypopophysen and Nebennierenekrankungen (Germany), AEAA Associacion Espanola de Afectados por Acromegalia (Spain), Dutch Addison Foundation, Magic Foundation (USA, Intl), UK CAH Support Group.

You may access the abstracts on the European Society of Endocrinology’s website.

Author: Meg Keil, PhD, CRNP, Winter, 2014
Editor’s Note: Meg Keil, PhD, CRNP is Associate Director, Nursing and Protocol Navigation NICHD, Office of the Clinical Director in Bethesda, MS. Meg has extensive experience in the area of pediatric Cushing’s.