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.