Tuebingen CD-25 is a sensitive tool to investigate health-related quality of life in Cushing's disease patients in the course of the disease.

BACKGROUND: The primary object was to investigate whether the Tuebingen CD-25 captures changes in health-related quality of life (HRQoL) sensitively in Cushing's disease (CD) and to identify factors that favour postoperative HRQoL. METHODS: 17 CD patients were scheduled for transsphenoidal tumour removal and filled out the inventory before and after surgery. The mean time elapsed after surgery was 14.4 ± 11.3 months. All patients were in remission at the second timepoint of investigation. RESULTS: HRQoL as assessed with the Tuebingen CD-25 improved significantly after successful surgical tumour removal. A large effect size (Cohen's d = 0.84) in the total score indicates good sensitivity to change. 13 patients (76.5%) showed impaired HRQoL preoperatively compared with a general population sample. Postoperatively, 35.3% of the patients still suffered from an impaired HRQoL. Stepwise linear regression analysis revealed that less comorbidities (≤2) and greater morning cortisol decrease were promotive factors for better postoperative HRQoL (p < 0.05). The postoperative improvement in HRQoL could be best predicted by the presence of preoperative HRQoL impairment and age of the patients, i.e. patients who were younger were more likely to improve. Moreover, patients without postoperative pituitary deficiencies improved significantly more in the cognition scale. A tendency towards more improvement in overall HRQoL was observed in non-hypocortisolaemic patients. CONCLUSIONS: The Tuebingen CD-25 has proved to be a capable and sensitive instrument to investigate HRQoL in the course of disease. The number of postoperative comorbidities had the greatest impact on postoperative well-being.

The development of the Tuebingen Cushing's disease quality of life inventory (Tuebingen CD-25). Part II: normative data from 1784 healthy people.

OBJECTIVE: In part I of the study, a health-related quality of life (HRQoL) inventory for Cushing's disease (CD), the Tuebingen Cushing-25 quality of life inventory (Tuebingen CD-25) was developed. In this second part, we aimed to assess normative data from healthy controls (HC) with which the individual patients' scores can be compared. DESIGN: Cross-sectional study. PARTICIPANTS: Sixty-three patients with CD (52 women, 11 men) and 1784 HC (1210 women, 574 men) filled out the Tuebingen CD-25. MEASUREMENTS: HC received the inventory as a nondisease-specific quality of life questionnaire omitting the introductory sentence 'Because of my Cushing's disease' which was included in the CD group to be able to compare HRQoL in persons with and without CD. Slight and severe impairments were categorized according to the following principles: percent ranges >84.0% were classified as slight and percent ranges >95.0% as severe impairment. RESULTS: In 28.6% of our patients with CD, we found slight and in 41.3% severe impairment in the Total Score of the Tuebingen CD-25 compared with HC. Less than one-third of our patient sample presented with unimpaired HRQoL. In the patient population, impairment was found in all scales of the Tuebingen CD-25 to a similar extent (P = 0.444), pointing to the fact that all HRQoL domains are similarly impaired. We observed that female patients perceived a worse HRQoL than men in the domains depressive symptoms and social environment (P < 0.05). CONCLUSION: The Tuebingen CD-25 is a feasible instrument to assess HRQoL in CD in a clinical and investigative setting and provides normative data for all age groups and genders.

The development of the Tuebingen Cushing's disease quality of life inventory (Tuebingen CD-25). Part I: construction and psychometric properties.

OBJECTIVE: To develop a disease-specific questionnaire for Cushing's disease (CD), the Tuebingen Cushing's disease quality of life inventory (Tuebingen CD-25). METHODS: Sources for item generation consisted of technical literature, interviews with patients and the rating of neurosurgeons, endocrinologists and a neuropsychologist. A preliminary inventory with 64 items was handed out to 63 CD patients. Twenty-eight patients filled out the questionnaire preoperative, the remaining 35 patients evaluated their health-related quality of life (HRQoL) retrospectively. Item reduction and scale generation followed the principles of classical test theory. Validation was performed with the WHOQoL-BREF. RESULTS: The final version of the Tuebingen CD-25 contained 25 items, showed high reliability (Cronbach's alpha = 0.93) and validity (r = -0.65) and includes the subdomains Depression, Sexual Activity, Environment, Eating Behaviour, Bodily Restrictions and Cognition. The retrospective rating of the Tuebingen CD-25 showed similar results compared to the pretreatment group. We found a non-linear correlation between the Tuebingen CD-25 scores and patients' age, younger (21-30 years) and middle-aged (51-60 years) patients having inferior HRQoL than patients between 31 and 50 years and older than 61 years. Preoperative 24 h urinary free cortisol (UFC) levels correlated significantly with the subscale Cognition and only marginally failed significance level for the subscale Eating Behaviour, while preoperative cortisol and ACTH levels did not correlate with any scale. CONCLUSION: The Tuebingen CD-25 is a valid and reliable instrument to evaluate HRQoL in CD. Based on impairment of HRQoL for the different subdimensions, specific support can be offered to the patients.