ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2025
Qualitative evidence on EQ-5D-5L skin irritation and self-confidence bolt-ons in Darier's disease and Hailey-Hailey disease.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- Psychometric benefits of adding four bolt-ons (skin irritation, self-confidence, social relationships and sleep) to EQ-5D-5L compared to PROMIS-29 and Skindex-16 in patients with psoriasis and atopic dermatitis.The European journal of health economics : HEPAC : health economics in prevention and care · 2026Article
- Comparative performance of EQ-5D-5L bolt-ons in China and the Netherlands: results from the EQ-DAPHNIE project.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Thinking-aloud methodology applied to health questionnaire development and validation: a scoping review.BMC medical research methodology · 2026Article
- Psychometric properties of four FACE-Q Aesthetics scales in patients planning and undergoing minimally invasive facial cosmetic procedures.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Qualitative testing of the EQ-HWB-9 with a 'blank' EQ-HWB VAS and EQ-5D-5L with skin bolt-ons in a rare genetic skin disease population.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Psychometric benefits of adding bolt-ons to the EQ-5D-5L in populations undergoing minimally invasive cosmetic procedures.The European journal of health economics : HEPAC : health economics in prevention and care · 2025Article
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4 authors.
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Abstract
objectivesLimited evidence is available about the content validity of the EQ-5D-5L in rare skin fragility disorders. Previous research has demonstrated that the skin irritation and self-confidence additional dimensions (bolt-ons) improve the content validity of the EQ-5D-5L in psoriasis and atopic dermatitis. Our aim was to investigate the content validity of the EQ-5D-5L and the two bolt-ons in Darier's disease and Hailey-Hailey disease.
methodsIn 2023, we conducted qualitative, semi-structured interviews with 15 adult patients at a university dermatology clinic. Patients completed the EQ-5D-5L with two bolt-ons using a think-aloud technique. We used probing questions to explore the relevance, comprehensiveness and comprehensibility. Thematic analysis was applied to analyze the transcripts from the interviews.
resultsMost patients found both the EQ-5D-5L and the two bolt-ons comprehensible and relevant to their disease. All patients preferred the EQ-5D-5L with the two bolt-ons over the EQ-5D-5L alone. Twelve potential missing concepts were identified after the EQ-5D-5L + bolt-ons, but only financial impact and sex life were identified by more than one patient. Only one patient reported a conceptual overlap between the skin irritation bolt-on and the pain/discomfort dimension.
conclusionsOur findings suggest that there is no actionable evidence indicating gaps in the content validity of the EQ-5D-5L with two bolt-ons in Darier's and Hailey-Hailey disease. Future studies are encouraged to conduct quantitative psychometric testing of the bolt-ons in this and other chronic dermatological patient populations.
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