Validation of the Tuebingen CD-25 Inventory as a Measure of Postoperative Health-Related Quality of Life in Patients Treated for Cushing's Disease

Milian, Monika; Kreitschmann-Andermahr, Ilonka; Siegel, Sonja; Kleist, Bernadette; Führer-Sakel, Dagmar; Honegger, Juergen; Buchfelder, Michael; Psaras, Tsambika

doi:10.1159/000431022

Cited by 13 publications

(22 citation statements)

References 17 publications

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“…Although HRQoL improves after successful treatment of hypercortisolism, it does not completely normalise . This is likely due to the persistence, to various degrees, of several features associated with previous cortisol excess, including cardiovascular morbidity, myopathy‐related fatigability, bone fragility, affective alterations and cognitive dysfunctions .…”

Section: Introductionmentioning

confidence: 99%

“…[4][5][6] Although HRQoL improves after successful treatment of hypercortisolism, it does not completely normalise. 5,[7][8][9][10][11][12][13][14][15] This is likely due to the persistence, to various degrees, of several features associated with previous cortisol excess, including cardiovascular morbidity, myopathy-related fatigability, bone fragility, affective alterations and cognitive dysfunctions. 6,16,17 All these factors, along with negative illness perception, affect well-being of CS patients, even years after remission 2,18 ; (Figure 1).…”

Section: Introductionmentioning

confidence: 99%

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Worse Health‐Related Quality of Life at long‐term follow‐up in patients with Cushing's disease than patients with cortisol producing adenoma. Data from the ERCUSYN

Valassi

Feelders²,

Maiter

et al. 2018

Clinical Endocrinology

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Summary Objective Hypercortisolism in Cushing's syndrome (CS) is associated with impaired health‐related quality of life (HRQoL), which may persist despite remission. We used the data entered into the European Registry on Cushing's syndrome (ERCUSYN) to evaluate if patients with CS of pituitary origin (PIT‐CS) have worse HRQoL, both before and after treatment than patients with adrenal causes (ADR‐CS). Methods Data from 595 patients (492 women; 83%) who completed the CushingQoL and/or EQ‐5D questionnaires at baseline and/or following treatment were analysed. Results At baseline, HRQoL did not differ between PIT‐CS (n = 293) and ADR‐CS (n = 120) on both EuroQoL and CushingQoL. Total CushingQoL score in PIT‐CS and ADR‐CS was 41 ± 18 and 44 ± 20, respectively (P = .7). At long‐time follow‐up (>1 year after treatment) total CushingQoL score was however lower in PIT‐CS than ADR‐CS (56 ± 20 vs 62 ± 23; P = .045). In a regression analysis, after adjustment for baseline age, gender, remission status, duration of active CS, glucocorticoid dependency and follow‐up time, no association was observed between aetiology and HRQoL. Remission was associated with better total CushingQoL score (P < .001), and older age at diagnosis with worse total score (P = .01). Depression at diagnosis was associated with worse total CushingQoL score at the last follow‐up (P < .001). Conclusion PIT‐CS patients had poorer HRQoL than ADR‐CS at long‐term follow‐up, despite similar baseline scoring. After adjusting for remission status, no interaetiology differences in HRQoL scoring were found. Age and presence of depression at diagnosis of CS may be potential predictors of worse HRQoL regardless of CS aetiology.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Worse Health‐Related Quality of Life at long‐term follow‐up in patients with Cushing's disease than patients with cortisol producing adenoma. Data from the ERCUSYN

Valassi

Feelders²,

Maiter

et al. 2018

Clinical Endocrinology

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“…The Tuebingen CD-25 was developed in 2011 and demonstrated good psychometric properties (high reliability: Cronbach’s alpha = 0.93; and validity: r = − 0.65) [44]. It was statistically validated against the CushingQoL in 2015 with a reasonable correlation (Spearman’s coefficient = − 0.73; p < 0.01) [45]. It includes 6 subscales: depression, sexual activity, environment, eating behaviour, bodily restrictions, cognition and a total score.…”

Section: Discussionmentioning

confidence: 99%

Illustration of patient-reported outcome challenges and solutions in rare diseases: a systematic review in Cushing’s syndrome

Knoble

Nayroles

Cheng

et al. 2018

Orphanet J Rare Dis

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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. Two CS-specific Health Related Quality of Life (HRQL) measures were identified (i.e., CushingQoL, Tuebingen CD-25), as well as depression and neurocognitive measures. For CS-specific HRQL measures, the CushingQoL was the most widely used measure due in part to being the first CS-specific HRQL measure developed. With algorithms mapping the CushingQoL to both the SF-6D and EQ-5D, the CushingQoL could be used to facilitate economic modelling studies in the absence of a generic HRQL measure. While the CushingQoL offers only the global scale and two subscales compared to the six subscales of the Tuebingen CD-25, there is not yet adequate statistical validation data available for the Tuebingen CD-25 to suggest it can withstand the scrutiny of review by multiple stakeholders. Results of this review indicate that the inclusion of a measure of depressive symptoms, such as the BDI-II or similar measure, would be reasonable to include given the high level of comorbidity of depression among CS patients. A brief neurocognitive performance outcome, such as Trail Making tasks A and D or Digit Symbol, could help inform the interpretation of HRQL results. Neurocognitive differences may be an unassessed mediator of HRQL outcomes, partly accounting for the persistence of depressive symptoms and HRQL deficits despite treatment. Results suggest that HRQL improvements are possible within this population. These results are limited by small sample sizes and pre/post study design.CS showcases the difficulties encountered in measuring PROs in rare diseases. A solution for this specific case was developed in the form of dedicated PRO instruments, the CushingQOL and the Tuebingen-25. However, some aspects of CS may not be fully answered or not yet validated (e.g., depressive and cognitive symptoms). Further research needs to be done to address them.Electronic supplementary materialThe online version of this article (10.1186/s13023-018-0958-4) contains supplementary material, which is available to authorized users.

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“…In this questionnaire lower scores indicate a better QoL (in contrast with CushingQoL). Less studies are available with this questionnaire, although some psychometric properties had been demonstrated, as high reliability and validity, sensitivity to change and construct and criterion validity (27,29,30). A strong correlation has been found when comparing scores of both CushingQoL and Tuebingen CD-25 (R = −0.733) (30).…”

Section: How Can Health-related Quality Of Life Be Measured?mentioning

confidence: 99%

“…Less studies are available with this questionnaire, although some psychometric properties had been demonstrated, as high reliability and validity, sensitivity to change and construct and criterion validity (27,29,30). A strong correlation has been found when comparing scores of both CushingQoL and Tuebingen CD-25 (R = −0.733) (30). There are also other types of questionnaires that may not be directly considered QoL questionnaires, although they are able to measure a specific domain which considerably impacts on QoL.…”

Section: How Can Health-related Quality Of Life Be Measured?mentioning

confidence: 99%

Quality of Life in Patients With Cushing's Disease

et al. 2019

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Cushing's disease (and by extension, Cushing's syndrome) is a rare disease due to a chronic cortisol excess, which usually has an important impact on quality of life (QoL). It can lead to numerous comorbidities that can interfere with daily life, as fatigability, myopathy, bone loss and fragility, increased cardiovascular risk, depression, and cognitive alterations. Of note, psychological alterations (including depression and anxiety) occur often, and are an important determinant of impaired quality QoL. QoL scores using different questionnaires are poorer in comparison to healthy controls, other pituitary adenomas and some chronic diseases. Even if some improvements can be observed after successful treatment, recovery does not seem to be complete, and comorbidities persist. This persistent QoL impairment has been found using both generic and disease-specific QoL questionnaires, and is also reported by the patients themselves, when asked directly. Multidisciplinary teams are essential to improve patients' well-being. Clinicians should take into account the whole scope of clinical problems and address the different comorbidites associated with the disease. Screening in the psychological sphere, with further intervention if necessary, can be helpful in the management of these patients. Interventions and programs have shown promising results, although there is a need for further development of new strategies for the benefit of these patients.

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Validation of the Tuebingen CD-25 Inventory as a Measure of Postoperative Health-Related Quality of Life in Patients Treated for Cushing's Disease

Cited by 13 publications

References 17 publications

Worse Health‐Related Quality of Life at long‐term follow‐up in patients with Cushing's disease than patients with cortisol producing adenoma. Data from the ERCUSYN

Worse Health‐Related Quality of Life at long‐term follow‐up in patients with Cushing's disease than patients with cortisol producing adenoma. Data from the ERCUSYN

Illustration of patient-reported outcome challenges and solutions in rare diseases: a systematic review in Cushing’s syndrome

Quality of Life in Patients With Cushing's Disease

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