Endocrine Abstracts

Background

Having experienced Cushing’s syndrome and disease, this author is now a Doctor of Philosophy student studying these medical conditions with the main aim of finding out if others diagnosed with these illnesses have experienced similar diagnostic and treatment journeys with similar outcomes.

Method

An online 2020 survey was conducted on 86 Cushing’s members of the Pituitary Foundation, (Females = 71, Males = 15). The questionnaire contained 40 questions and the results analysed and reported quantitively and qualitatively.

Main Results:

The mean age of the females was 44, the males 39, (Ages 19–70 years). The mean length of time for a diagnosis of CS was 4.9 years, and for CD, 3.2 years. The male results were 2.5 years and 1.3 years respectively. The mean number of physicians consulted prior to diagnosis was 3. All members had blood tests prior to their diagnosis (Mean = 4). A range of diagnostic medical imaging examinations/procedures were named by 81% of the members. A collective total of 170 diagnostic imaging examinations/procedures were conducted prior to diagnosis. 49% had pituitary surgery, 55% had adrenal surgery and 36% of the members had been advised that they would always require to take steroid medicines. 22% had radiotherapy and 5% had chemotherapy. 81% found that their Cushing’s illness had impacted on their work status, social life, personal and family relationships. 45% of the members found their endocrine team did not involve their family, while 52% found the team to be very supportive. 44% of the members were given advice to join a support group. 90% of them agreed that there is insufficient public awareness, 44% also agreed that there was a lack of knowledge/awareness by health professionals and suggested a range of educational training methods and promotional material. The QoL was measured using a Likert 5-point scale. The results showed slightly higher QoL scores at the time of completing the questionnaire than prior to diagnosis and during treatment. On examining the differences between the responses to these questions, no significant difference was found, (P =.406), I e there was no evidence of an improvement in their health status.

Conclusion

The many factors which combine to reduce QoL in those who are diagnosed with Cushing’s illnesses were identified. Despite medical interventions the comorbidities, both physical and psychological create long-term detrimental effects, and in many cases cannot be reversed. The management of this disease can be improved by raising awareness in health professionals.