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

Authors

  • Marina Otten Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Martinistraße 52, DE-20251 Hamburg, Germany
  • Matthias Augustin Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE) https://orcid.org/0000-0002-4026-8728
  • Christine Blome Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE) https://orcid.org/0000-0002-1163-1639
  • Janine Topp Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE) https://orcid.org/0000-0002-7105-3244
  • Marina Niklaus Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE)
  • Caroline Hilbring Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE) https://orcid.org/0000-0003-3832-5786
  • Falk G. Bechara Dermatologic Surgery Unit, Department of Dermatology, Ruhr-University Bochum
  • Andreas Pinter Clinic for Dermatology, Venereology and Allergology, University Hospital Frankfurt
  • Christos C. Zouboulis Department of Dermatology, Venereology, Allergology and Immunology, Dessau Medical Center
  • Florian Anzengruber Department of Dermatology, University Hospital Zurich
  • Natalia Kirsten Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE) https://orcid.org/0000-0003-2390-2309

DOI:

https://doi.org/10.2340/actadv.v102.2485

Keywords:

quality of life, burden, well-being, patient-reported outcome measure, validation, validation, hidradenitis suppurativa

Abstract

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.

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References

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Published

2023-01-31

How to Cite

Otten, M., Augustin, M., Blome, C., Topp, J., Niklaus, M., Hilbring, C., Bechara, F. G. ., Pinter, A., Zouboulis, C. C. ., Anzengruber, F. ., & Kirsten, N. (2023). Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research. Acta Dermato-Venereologica, 103, adv00859. https://doi.org/10.2340/actadv.v102.2485