Background: Cushing's syndrome (CS) is a rare condition of chronically elevated cortisol levels resulting in diverse comorbidities, many of which endure beyond successful treatment affecting the... Show moreBackground: Cushing's syndrome (CS) is a rare condition of chronically elevated cortisol levels resulting in diverse comorbidities, many of which endure beyond successful treatment affecting the quality of life. Few data are available concerning patients' experiences of diagnosis, care and persistent comorbidities.Objective: To assess CS patients' perspectives on the diagnostic and care journey to identify unmet therapeutic needs.Methods: A 12-item questionnaire was circulated in 2019 by the World Association for Pituitary Organisations. A parallel, 13-item questionnaire assessing physician perceptions on CS patient experiences was performed.Results: Three hundred twenty CS patients from 30 countries completed the questionnaire; 54% were aged 35-54 and 88% were female; 41% were in disease remission. The most burdensome symptom was obesity/weight gain (75%). For 49% of patients, time to diagnosis was over 2 years. Following treatment, 88.4% of patients reported ongoing symptoms including, fatigue (66.3%), muscle weakness (48.8%) and obesity/weight gain (41.9%). Comparisons with delay in diagnosis were significant for weight gain (P = 0.008) and decreased libido (P = 0.03). Forty physicians completed the parallel questionnaire which showed that generally, physicians poorly estimated the prevalence of comorbidities, particularly initial and persistent cognitive impairment. Only a minority of persistent comorbidities (occurrence in 1.3-66.3%; specialist treatment in 1.3-29.4%) were managed by specialists other than endocrinologists. 63% of patients were satisfied with treatment.Conclusion: This study confirms the delay in diagnosing CS. The high prevalence of persistent comorbidities following remission and differences in perceptions of health between patients and physicians highlight a probable deficiency in effective multidisciplinary management for CS comorbidities. Show less
Haugaa, K.H.; Marsan, N.A.; Cameli, M.; D'Andrea, A.; Dweck, M.R.; Carvalho, R.F.; ... ; Edvardsen, T. 2019
The European Association of Cardiovascular Imaging (EACVI) is committed to maintaining the highest standards of professional excellence in all aspects of cardiovascular imaging. The mission of the... Show moreThe European Association of Cardiovascular Imaging (EACVI) is committed to maintaining the highest standards of professional excellence in all aspects of cardiovascular imaging. The mission of the EACVI is to promote excellence in clinical diagnosis, research, technical development, and education in cardiovascular imaging with a particular focus on education, training, scientific initiatives, and research. The EACVI established the Scientific Initiatives Committee (SIC) in December 2018. This committee has responsibility for surveys among imagers, patients' surveys and surveys including data from clinical practice. The current document describes the aims of the EACVI SIC and the creation of the international EACVI survey network. This document summarizes the EACVI's standards for the survey questions and standards for writing the papers with the results of the surveys. These are in accordance with previous recommendations and were approved by the EACVI SIC and the EACVI Board in 2019. Show less
