gms | German Medical Science

Objective: To assess the course of health related quality of life (HRQoL) in Cushing’s disease applying the disease specific and newly developed Cushing’s disease quality of life inventory in a longitudinal study and to investigate whether the questionnaire is sensitive for changes.

Method: Seventeen Cushing’s disease (CD) patients (14 female, 3 male) with a mean age of 41.7±15.8 years who were scheduled for transsphenoidal tumour removal filled out the CD-25 before and after surgery. The mean time elapsed after surgery was 14.4±11.3 months. All patients were in remission at the second time point of investigation. Thirteen patients (76.5%) were receiving hydrocortisone replacement therapy. Patients’ postoperative scores were compared with their preoperative sores. Additionally, the results were compared with normative data for their age group and gender.

Results: Preoperatively, 58.8% of the patients presented with an impaired HRQoL when compared with age- and gender-matched healthy controls. With the exception of the depression scale, HRQoL improved significantly after successful surgical tumour removal (each p<0.05). A change in the Total Score of the inventory of at least 10.5 points was identified as the minimal important difference. Based on this margin, almost 60 % of all patients showed a considerable improvement in their HRQoL. However, 29.4% of the patients in remission still suffered from an impaired HRQoL compared to healthy controls. The most frequent impairments concerning HRQoL before and after successful treatment were (i) neurocognitive decline, (ii) decreased physical functioning and (iii) disturbed sexual activity. In several scales we found significant correlations between the cortisol decrease and the follow-up scores (correlations between r= –0.57 and r= –0.69, p<0.05). This proves that the inventory is a sensitive instrument for the assessment of changes in HRQoL after treatment.

Conclusions: The new inventory has shown to be sensitive for the assessment of changes after treatment of Cushing’s disease. Although all domains of HRQoL apart from the depression scale improved after remission, one third of the patients continue to suffer from impaired HRQoL when compared to healthy subjects. There seems to be a rule in CD that is comparable to the findings in other diseases: While 2/3 of the patients suffer from impaired HRQoL before treatment, 1/3 continues to suffer even after successful treatment.