Medizinische Universität Graz Austria/Österreich - Forschungsportal - Medical University of Graz
Gewählte Publikation:
SHR Neuro Krebs Kardio Lipid Stoffw Microb
Prior, N; Remor, E; Pérez-Fernández, E; Caminoa, M; Gómez-Traseira, C; Gayá, F; Aabom, A; Aberer, W; Betschel, S; Boccon-Gibod, I; Bouillet, L; Bygum, A; Csuka, D; Farkas, H; Gomide, M; Grumach, A; Leibovich, I; Malbran, A; Moldovan, D; Mihaly, E; Obtulowicz, K; Perpén, C; Peveling-Oberhag, A; Porebski, G; Chavannes, CR; Reshef, A; Staubach, P; Wiednig, M; Caballero, T.
Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults: HAE-QoL.
J Allergy Clin Immunol Pract. 2016; 4(3):464-473
Doi: 10.1016/j.jaip.2015.12.010
Web of Science
PubMed
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- Co-Autor*innen der Med Uni Graz
- Aberer Werner
- Wiednig Michaela
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- Abstract:
- Hereditary angioedema due to C1 inhibitor deficiency (C1-INH-HAE) may affect health-related quality of life (HRQoL). A specific HRQoL questionnaire for adult patients with C1-INH-HAE, the HAE-QoL, has recently been developed in Spain. The objective of this study was to perform a cross-cultural validation and psychometric study of the HAE-QoL in an international setting. Cross-cultural adaptation of the Spanish HAE-QoL draft version and an international rating phase with experts were performed. The resultant version of the HAE-QoL, a clinical questionnaire, and Short Form 36-item Health Survey Version 2.0 (SF-36v2) were pilot tested internationally. Item reduction was based on both descriptive and exploratory factor analysis. Psychometric properties were assessed. Cross-cultural adaptation of the HAE-QoL was performed in 18 countries. The draft version of the HAE-QoL was pilot tested in 332 patients, and accurate data were obtained from 290 patients from 11 countries. The reduction process resulted in a new version with 25 items and 7 dimensions (treatment difficulties, physical functioning and health, disease-related stigma, emotional role and social functioning, concern about offspring, perceived control over illness, and mental health). Strong psychometric properties were observed (Cronbach's α 0.92; test-retest reliability 0.87). Convergent validity showed mild to moderate correlations with SF-36v2 physical and mental component summaries (0.45 and 0.64, respectively) and with SF-36v2 dimensions (P < .004). HAE-QoL scores discriminated significantly among severity groups (median: asymptomatic 133.5 vs severe 84.0; P < .001); between patients with and without long-term prophylaxis (median: 101 vs 90; P = .001); and between patients with and without psychiatric and/or psychological care (median: 74 vs 103; P ≤ .001). The HAE-QoL, currently available in 18 languages, showed good reliability and validity evidence. Copyright © 2016 American Academy of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.
- Find related publications in this database (using NLM MeSH Indexing)
- Adult -
- Angioedemas, Hereditary - psychology
- Female -
- Humans -
- Male -
- Psychometrics -
- Quality of Life -
- Surveys and Questionnaires -
- Find related publications in this database (Keywords)
- Disease-specific
- Quality of life
- Hereditary angioedema
- C1 inhibitor
- Questionnaire
- Validation studies
- Psychometric
- Adults
- HAE-QoL
- SF-36v2