OBJECTIVE: To identify predictors for quality of life (QoL) in treated Cushing's disease (CD) and quantify patients' assessment of their disease status. CONTEXT: Significant reductions in QoL exist in CD patients despite treatment. Identifying predictors of QoL is paramount to the long-term management of these patents. DESIGN: A cross-sectional study was conducted of patients with treated CD. Patients completed a medical history questionnaire and three validated quality of life assessments: Cushing's QoL Questionnaire (CushingQoL), Hospital Anxiety and Depression Scale (HADS) and Nottingham Health Profile (NHP). PATIENTS: 102 patients (75·7% female, mean time since surgery 7·4 years) with treated CD were included. MEASUREMENTS: Patients were categorized by biochemical and self-identified disease status. Mean CushingQoL, anxiety and depression scores were compared by unpaired t-tests. Multiple linear regressions were performed on the whole cohort to assess for predictors of impaired QoL. RESULTS: Ninety-two per cent of the cohort met criteria for biochemical remission, but only 80·4% felt they had achieved remission. Among those with biochemical remission, those who also self-identified as being in remission had higher CushingQoL scores than those who self-identified as having persistent disease (P = 0·042). Anxiety (P = 0·032) and depression (P = 0·018) scores were lower, and CushingQoL scores were higher (P = 0·05) in patients who self-identified as being in remission compared to persistence. Recovery time, BMI, gender and age were also predictors for QoL. CONCLUSION: Our study identifies the discordance that can exist between biochemical and self-assessed disease status and demonstrates its impact on QoL in patients with CD. These findings highlight the importance of incorporating patients' disease perceptions in their management.
OBJECTIVE: To identify predictors for quality of life (QoL) in treated Cushing's disease (CD) and quantify patients' assessment of their disease status. CONTEXT: Significant reductions in QoL exist in CDpatients despite treatment. Identifying predictors of QoL is paramount to the long-term management of these patents. DESIGN: A cross-sectional study was conducted of patients with treated CD. Patients completed a medical history questionnaire and three validated quality of life assessments: Cushing's QoL Questionnaire (CushingQoL), Hospital Anxiety and Depression Scale (HADS) and Nottingham Health Profile (NHP). PATIENTS: 102 patients (75·7% female, mean time since surgery 7·4 years) with treated CD were included. MEASUREMENTS: Patients were categorized by biochemical and self-identified disease status. Mean CushingQoL, anxiety and depression scores were compared by unpaired t-tests. Multiple linear regressions were performed on the whole cohort to assess for predictors of impaired QoL. RESULTS: Ninety-two per cent of the cohort met criteria for biochemical remission, but only 80·4% felt they had achieved remission. Among those with biochemical remission, those who also self-identified as being in remission had higher CushingQoL scores than those who self-identified as having persistent disease (P = 0·042). Anxiety (P = 0·032) and depression (P = 0·018) scores were lower, and CushingQoL scores were higher (P = 0·05) in patients who self-identified as being in remission compared to persistence. Recovery time, BMI, gender and age were also predictors for QoL. CONCLUSION: Our study identifies the discordance that can exist between biochemical and self-assessed disease status and demonstrates its impact on QoL in patients with CD. These findings highlight the importance of incorporating patients' disease perceptions in their management.