Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research

• Main Authors: Marina Otten (Author), Matthias Augustin (Author), Christine Blome (Author), Janine Topp (Author), Marina Niklaus (Author), Caroline Hilbring (Author), Falk G. Bechara (Author), Andreas Pinter (Author), Christos C. Zouboulis (Author), Florian Anzengruber (Author), Natalia Kirsten (Author)
• Format: Book
• Published: Medical Journals Sweden, 2023-01-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Summary

Hidradenitis suppurativa is a chronic disease that disrupts patients' physical and psychological well-being. A disease-specific measure was developed and validated for assessing health-related quality of life in hidradenitis suppurativa. After qualitative item development, the quality of life in hidradenitis suppurativa instrument was tested in 101 patients, applying convergent measures and a usability questionnaire. Descriptive and validation-specific analyses were conducted. There was no ceiling, but moderate floor effects (scores between 0 and 3.13 on a scale of 0-4). Few missing values were observed (21 of 23 items < 5%). Internal consistency was satisfying: 2 subscales with 6 and 16 items were identified (Cronbach's alpha=0.95 and 0.88). The quality of life in hidradenitis suppurativa instrument correlated significantly with all convergent criteria (including change in convergent patient-reported outcomes; p < 0.05) except for Hurley stage (p = 0.490). In conclusion, the quality of life in hidradenitis suppurativa questionnaire is an internally consistent, valid, responsive, and usable instrument to assess quality of life in patients with hidradenitis suppurativa.

Item Description

10.2340/actadv.v102.2485
0001-5555
1651-2057