Endocrine Abstracts

Introduction: As a Cushing syndrome (CS), patient myself and healthcare researcher I recognise that the patient’s voice is the strongest weapon in a clinician’s toolbox. Conducting a Doctor of Philosophy (PhD), study on a condition you have been diagnosed with was a journey of discoveries. My CS took almost 7 years to diagnose having been referred to a myriad of physicians prior to my definitive diagnosis. This was the driving force behind my desire to find out if other patients had similar experiences. This paper concentrates on a section of the disease-specific health-related quality of life (HRQoL), questionnaire specifically designed for my PhD study.

Method: Qualitative analysis was performed on open questions which were based on the members’ perceived changes in their social and personal lives and any further information which they experienced, negative or positive as a consequence of their Cushing’s illness. Thematic analysis of the textural content given in the answers was used to ascertain patterns (themes). Using the frequency results for the reasons given for a change, the emerging responses were coded in hieratical order to categorize the data. This process enabled the analysis of the common themes which emerged from the members responses. The frequency (%), of responses were displayed in Graphs and reported in themes. In addition, members were asked if they were satisfied with their clinician’s ability to diagnose their CS.

Result: Eighty-six members of the Pituitary Foundation participated. 81% found that their social lives had changed and 95.7% their personal lives had also changed creating not only a physical but an emotional impact. The main reasons were their lack of sexual desire, body changes, anxiety, depression, mood swings, personality changes, exhaustion, fatigue, and suicidal ideation. Members felt that many physicians have little time to listen. This was reflected in 61.6% who relied on their support groups and helplines to share their experiences and seek advice. Feelings of frustration, dismay were experienced by 43.3%, expressing that their appointments were, “rushed,” with very little information, advice and what to expect regarding the long-term effects. Families were often not invited to their consultations, and this led to a lack of understanding by their families.

Conclusion: Clinicians should apply listening skills as a master key in their toolbox leading to speedier diagnosis and treatment assisting them to not only focus on the disease but adopt a patient-centred approach to treat patients as an individual with unmet needs.