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.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1111/j.1365-2265.2011.04191.x | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Patient-reported outcomes in refractory hormone-producing pituitary adenomas: an unmet need.
Pituitary
June 2023
Department of Medicine, Division of Endocrinology, and Center for Endocrine Tumors Leiden, Leiden University Medical Center, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands.
Purpose: To describe quality and outcomes of patient-reported outcome (PRO) measures (PROMs) used in patients with refractory hormone-producing pituitary adenomas, and to provide an overview of PROs in these challenging pituitary adenomas.
Methods: Three databases were searched for studies reporting on refractory pituitary adenomas. For the purpose of this review, refractory adenomas were defined as tumors resistant to primary therapy.
Glucocorticoid receptor polymorphism BclI with increased glucocorticoid sensitivity has a positive influence on quality of life in endogenous Cushing's syndrome in remission.
Eur J Endocrinol
April 2023
Endocrinology in Charlottenburg, 10627 Berlin, Germany.
Context: Patients with endogenous Cushing's syndrome (CS) may suffer from a wide range of neuropsychiatric symptoms leading to impaired quality of life (QoL).
Objective: Glucocorticoid receptor (GR) polymorphisms are associated with increased (BclI and N363S) or decreased (A3669G and ER22/23EK) GR sensitivity.
Hypothesis: GR genotypes may modulate and affect QoL and recovery after remission differently via GR sensitivity.
Illustration of patient-reported outcome challenges and solutions in rare diseases: a systematic review in Cushing's syndrome.
Orphanet J Rare Dis
December 2018
Mapi, an ICON plc Company, 27 rue de la Villette, 69003, Lyon, France.
Rare diseases are often not fully understood and efforts put in investigating it from patient perspective are usually met with challenges. We performed a systematic literature review (SLR) for the last 20 years in Cushing's Syndrome (CS) to illustrate Patient-Reported Outcome (PRO) challenges, and show what solutions were found.PROs and other Clinical Outcome Assessment (COA) used with CS patients were reviewed in 36 studies.
View Article and Find Full Text PDFCoping strategies have a strong impact on quality of life, depression, and embitterment in patients with Cushing's disease.
Pituitary
December 2016
Department of Neurosurgery, University of Duisburg-Essen, Hufelandstrasse 55, 45147, Essen, Germany.
Article Synopsis
- The study highlights that patients with Cushing's disease (CD) experience significant long-term impairments in quality of life and psychosocial well-being, even after treatment.
- A survey with 176 patients revealed high rates of anxiety, embitterment, and depression, linking poor coping strategies to psychosocial issues.
- The findings suggest that teaching patients positive coping methods could be beneficial in enhancing their overall treatment outcomes.
Health-related Quality of Life in Patients After Treatment of Cushing's Disease.
Exp Clin Endocrinol Diabetes
March 2016
Department of Neurosurgery, University Hospital Hamburg-Eppendorf, Hamburg, Germany.
Background: Patients suffering from Cushing's disease are known to be restricted due to a wide range of symptoms. Despite biochemical cure, symptoms might last life-long. These include - among well-known somatic symptoms - several neuropsychiatric symptoms that cannot be as easily tested, but lead to a serious negative impact on quality of life.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!