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Psychometric performance of the CushingQoL questionnaire in conditions of real clinical practice
Alicia Santos1, Eugenia Resmini, Ma Antonia Martínez-Momblán
1Endocrinology/Medicine Department, Hospital de Sant Pau, IIB-Sant Pau, Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER Unit 747), ISCIII, Universitat Autònoma de Barcelona (UAB), C/Sant Antoni Maria Claret 167, 08025 Barcelona, Spain.
Insights
The CushingQoL questionnaire accurately measures health-related quality of life in Cushing's syndrome (CS). It demonstrates reliable test-retest results and sensitivity to treatment changes in patients.
Area of Science:
- Endocrinology
- Clinical Psychology
Background:
- Cushing's syndrome (CS) significantly impacts patients' health-related quality of life (HRQoL).
- Assessing HRQoL is crucial for managing CS and evaluating treatment efficacy.
- The disease-specific CushingQoL questionnaire was developed to address this need.
Purpose of the Study:
- To evaluate HRQoL in CS patients using the CushingQoL questionnaire.
- To confirm the psychometric properties of the CushingQoL, specifically its test-retest reliability and sensitivity to change.
Main Methods:
- A cohort of 59 CS patients was studied in a tertiary referral center.
- The CushingQoL and EuroQoL questionnaires were administered at baseline and during follow-up.
- Test-retest reliability was assessed in stable patients, while sensitivity to change was evaluated in patients post-successful surgery.
Main Results:
- CushingQoL scores were significantly lower in active CS patients compared to cured patients (P<0.05).
- The questionnaire demonstrated good test-retest reliability in both stable cured (ICC=0.78) and active (ICC=0.66) patient groups.
- CushingQoL showed significant sensitivity to clinical improvement following surgery, with increasing scores at 4 and 9 months post-operation.
Conclusions:
- The CushingQoL questionnaire is a reliable and valid instrument for assessing HRQoL in CS patients.
- It exhibits strong test-retest reliability and sensitivity to treatment-induced changes in clinical practice.
- CushingQoL is a valuable tool for monitoring patient outcomes in CS management.
Objective:
To evaluate health-related quality of life (HRQoL) in Cushing's syndrome (CS) with the disease-generated CushingQoL questionnaire and to confirm its psychometric properties of test-retest reliability and sensitivity to change.
Design:
Clinical practice conditions in a tertiary referral center.
Methods:
The CushingQoL and EuroQoL questionnaires were administered at baseline and during follow-up and correlated with clinical parameters in 59 patients with CS. To check test-retest reliability, stable patients (either biochemically cured or with active hypercortisolism) were evaluated twice. To investigate sensitivity to change, new patients were evaluated at diagnosis and twice more following improvement after successful surgery.
Results:
At baseline, patients with active disease scored lower (indicating worse HRQoL) than those cured on the CushingQoL (46 ± 14 vs 58 ± 20, P<0.05) but not on the EuroQoL-visual analog scale (VAS; 64 ± 20 vs 70 ± 16, P NS). Test-retest reliability of CushingQoL was confirmed in stable patients, both in the 'cured group' (intraclass correlation coefficient (ICC)=0.78, n=34) and in the 'active group' (ICC=0.66, n=14). Sensitivity to change was confirmed in the 'improvement group' (n=11), as the CushingQoL score increased 4 ± 1.5 and 9 ± 3 months after surgery (P<0.01 and <0.001 respectively); the EuroQoL-VAS only improved after 9 ± 3 months (P<0.01). Effect sizes were 1.02 and 1.86 for CushingQoL at 4 ± 1.5 and 9 ± 3 months respectively. Finally, scores of both questionnaires were correlated (r=0.504; P<0.001).
Conclusions:
The CushingQoL questionnaire shows good test-retest reliability and sensitivity to change in clinical practice conditions.
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