Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults: HAE-QoL.
J Allergy Clin Immunol Pract
; 4(3): 464-473.e4, 2016.
Article
en En
| MEDLINE
| ID: mdl-26969268
ABSTRACT
BACKGROUND:
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.OBJECTIVE:
The objective of this study was to perform a cross-cultural validation and psychometric study of the HAE-QoL in an international setting.METHODS:
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.RESULTS:
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).CONCLUSIONS:
The HAE-QoL, currently available in 18 languages, showed good reliability and validity evidence.Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Calidad de Vida
/
Encuestas y Cuestionarios
/
Angioedemas Hereditarios
Tipo de estudio:
Qualitative_research
Aspecto:
Patient_preference
Límite:
Adult
/
Female
/
Humans
/
Male
Idioma:
En
Revista:
J Allergy Clin Immunol Pract
Año:
2016
Tipo del documento:
Article