Patients in long-term remission of Cushing's syndrome (CS) commonly report impaired quality of life (QoL). The CushingQoL questionnaire is a disease-specific QoL questionnaire for patients diagnosed with CS. The developers of the CushingQoL recommend using a global (total) score to assess QoL. However, the global score does not capture all aspects of QoL as outlined by the World Health Organization (WHO).
The aim of the study was to compare the performance of different scoring options to determine the optimal method for the CushingQoL.
Design and patients
Patients in remission from CS (n=341) were recruited from the Cushing's Syndrome Research Foundation's email listserv and Facebook page, and asked to complete the CushingQoL and a short demographics survey.
Using an exploratory analysis, adequate model fit was obtained for the global score, as well as a 2-subscale (psychosocial issues and physical problems) scoring solution. Confirmatory methods were performed to identify the optimal scoring solution. Both the global score and the 2-subscale scoring solution showed adequate model fit. However, a χ 2 difference test indicated that the 2-subscale scoring solution was a significantly better fit than the global score (P<0.05).
If doctors or researchers would like to tease apart physical and psychosocial issues, the 2-subscale scoring solution would be recommended, since this solution showed to be optimal in scoring the CushingQoL. Regardless of the scoring solution used, the CushingQoL has proven to be a valuable resource for assessing health-related QoL in patients with CS.