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HAE-AS: A Specific Disease Activity Scale for Hereditary Angioedema With C1-Inhibitor Deficiency.
Forjaz, M J; Ayala, A; Caminoa, M; Prior, N; Pérez-Fernández, E; Caballero, T.
Afiliação
  • Forjaz MJ; National School of Public Health, Institute of Health Carlos III and REDISSEC, Madrid, Spain.
  • Ayala A; National School of Public Health, Institute of Health Carlos III and REDISSEC, Madrid, Spain.
  • Caminoa M; Clinica Marazuela, Talavera de la Reina, Toledo, Spain.
  • Prior N; Hospital Universitario Severo Ochoa, Leganés, Madrid, Spain.
  • Pérez-Fernández E; Research Unit, Hospital Universitario Fundación Alcorcón, Madrid, Spain.
  • Caballero T; Allergy Department, Hospital Universitario La Paz, Madrid, Spain.
J Investig Allergol Clin Immunol ; 31(3): 246-252, 2021 Jun 22.
Article em En | MEDLINE | ID: mdl-31932270
BACKGROUND AND OBJECTIVE: The activity of hereditary angioedema due to C1-inhibitor deficiency (C1-INH-HAE) varies between patients and within individual patients. Objective: This study aims to develop a disease activity scale for C1-INH-HAE (HAE-AS) with sound measurement properties. METHODS: Eleven countries participated in a prospective multicenter cohort study. A clinical questionnaire was self-completed by 290 adult patients with C1-INH-HAE. Patients also completed 2 quality of life scales, the SF-36v2 and the HAE-QoL. Rasch analysis and classic psychometric methods were used to preselect a series of clinical items: number of attacks by location and number of treated attacks, emergency room visits, psychological/psychiatric treatment, missed school/workdays in the previous 6 months; general health; and impairment in everyday work/activities due to pain. RESULTS: The mean (SD) age was 41.5 (14.7; range, 18-84) years, and 69% were females. The final 12-item Rasch model showed that the HAE-AS had satisfactory reliability (person separation index, 0.748), local item independence, unidimensionality, and no item bias by age or sex. The HAE-AS provided scores in a linear measure, with a mean of 10.66 (3.92; range, 0-30). Further analysis with classic psychometric methods indicated that the HAE-AS linear measure presented moderate-to-high convergent validity with quality of life scales (SF-36v2: physical component, r=-0.33; mental component, 0.555; HAE-QoL, -0.61), and good discriminative validity by age, sex, and disease severity (P<.05). CONCLUSIONS: The HAE-AS is a short, valid, reliable, and psychometrically sound measure of the activity of C1-INH-HAE that could prove useful for research studies.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Psicometria / Proteína Inibidora do Complemento C1 / Angioedema Hereditário Tipos I e II Tipo de estudo: Clinical_trials / Observational_studies / Prognostic_studies Limite: Adolescent / Adult / Aged / Aged80 / Female / Humans / Male / Middle aged Idioma: En Revista: J Investig Allergol Clin Immunol Assunto da revista: ALERGIA E IMUNOLOGIA Ano de publicação: 2021 Tipo de documento: Article País de afiliação: Espanha

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Psicometria / Proteína Inibidora do Complemento C1 / Angioedema Hereditário Tipos I e II Tipo de estudo: Clinical_trials / Observational_studies / Prognostic_studies Limite: Adolescent / Adult / Aged / Aged80 / Female / Humans / Male / Middle aged Idioma: En Revista: J Investig Allergol Clin Immunol Assunto da revista: ALERGIA E IMUNOLOGIA Ano de publicação: 2021 Tipo de documento: Article País de afiliação: Espanha