Cushing syndrome and disease: a study of the diagnosis, treatment, clinical consequences and Health-related Quality of Life associated with these medical conditions

Abstract

Introduction: Cushing syndrome and disease are classified as rare diseases. The estimated incidence of CS (2021), was 10 to 15 per million people worldwide per year and can occur in any age group, mostly diagnosed in females with a median age of 41 years. The mortality rate is reported to be between 2-4 times higher than the general population. This study was conducted following my diagnosis of CS to compare other patients experiences of these medical conditions with my own, and the clinical consequences following a diagnosis and treatment of CS.

Methods: A HRQoL survey was conducted on members of the Pituitary Associations using a disease-specific on-line questionnaire. Quantitative and Qualitative analysis was performed. Semi-structured interviews were also conducted on a range of Health Professions disciplines.

Results: The study population was 86. The 71 female members median age was 42 and the 15 males was 39.4 years. The results showed a strong correlation between age and QoL scores, (r<1, P < .03). The median length of time for a diagnosis of CS was 5.4 years (females), and 3.7years for the males. The median number of Physicians consulted prior to a diagnosis was 2. The results showed a strong correlation between the number of Physicians and their QoL scores, (r .78, P < .05). Both genders reported physical and psychological conditions.

Conclusions: The wide clinical spectrum of CS produces medical dilemmas as symptoms vary and therefore patients can be sent to a range of Physicians prior to a definitive diagnosis. The prolonged consequences of excess cortisol affected my own and their HRQoL, even after remission, mainly due to the persistence of physical and neuropsychological morbidity. There remains a lack of psychological support and Health Professionals awareness. A patient’s perspective should be recognised to be an integral part of the management of CS.

Date of Award	12 Jan 2023
Original language	English
Awarding Institution	University of Cumbria Lancaster University
Supervisor	Tim Donovan (Supervisor)