Endocrine Abstracts

Background: CS and CD, a baffling portmanteau of symptoms, each often ascribed to other medical conditions, but together representing diagnostically, challenging medical conditions. Often coming, ‘disguised’, as other stand-alone medical conditions My diagnosis of CS and CD took me on a tortuous diagnostic journey taking almost 6 years to diagnose. My GP, during her 12 years of practice had never diagnosed CS. As part of my current PhD study of CS/CD, one of my objectives is to measure the levels of awareness of these medical conditions by Health Professionals; if they are knowledgeable of the CS/CD signs and symptoms and if they practice effective communication in order to improve their patients’ health outcomes.

Work in progress results: A pilot survey was conducted during September 2019 with a study population of 11 Cushing’s members of the Pituitary Foundation UK, median age of 47 years. Fifty-five percent of the participants were diagnosed with CS, median length of time for a diagnosis being 2.9 years. Seventy-three percent were diagnosed with CD, median time for diagnosis, 4.3 years, 27% of those were diagnosed with both CS and CD. Forty-five of the participants had to give up work due to their comorbidities created by the disease processes, 21% for psychological reasons and 89% for physical medical conditions. Eighty-two percent were in remission, but all participants were experiencing additional medical conditions which they had not experienced prior to the Cushing’s diagnosis. One hundred per cent of the participants reported that they experienced a lack of advice and guidance from their endocrine team, particularly related to family involvement. Only 1 participant had been diagnosed by her GP, the median number of physicians consulted prior to their diagnosis was 4, the median length of time for referral to the endocrine team was 4.5 years. Only 1 participant received advice from their endocrine team about joining a support group. Twelve Health Professionals ranging from GPs, (2) Nurses (3), medical doctors (3), AHPs (4) when interviewed had very little or no experience of diagnosing or treating CS or CD.

Conclusion: The interim results suggest that there exists a lack of clinical support and Health Professional awareness of Cushing’s which results in an unacceptable length of time for diagnosis. It is crucial therefore that Health Professionals from all disciplines should be made fully aware of the signs and symptoms of CS and CD and the endocrine disorders support organisations.