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Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults: HAE-QoL
Nieves Prior1, Eduardo Remor2, Elia Pérez-Fernández3
1Allergy Department, Hospital Universitario Severo Ochoa, Leganés, Madrid, Spain.
Insights
The Hereditary Angioedema Quality of Life (HAE-QoL) questionnaire was internationally validated for patients with C1 inhibitor deficiency. This tool demonstrates strong reliability and validity, aiding in assessing health-related quality of life for HAE patients globally.
Area of Science:
- Medical Research
- Quality of Life Assessment
- Rare Diseases
Background:
- Hereditary angioedema due to C1 inhibitor deficiency (C1-INH-HAE) significantly impacts patients' health-related quality of life (HRQoL).
- A specialized HRQoL questionnaire, the HAE-QoL, was developed in Spain for adult C1-INH-HAE patients.
Purpose of the Study:
- To conduct a cross-cultural validation and psychometric evaluation of the HAE-QoL questionnaire in an international patient population.
- To establish the reliability and validity of the HAE-QoL for assessing HRQoL in hereditary angioedema.
Main Methods:
- Cross-cultural adaptation of the Spanish HAE-QoL draft into 18 languages.
- International pilot testing with 332 patients, yielding data from 290 patients across 11 countries.
- Item reduction based on factor analysis, followed by psychometric property assessment.
Main Results:
- A 25-item, 7-dimension HAE-QoL version was finalized, demonstrating strong psychometric properties (Cronbach's α=0.92, test-retest reliability=0.87).
- Convergent validity was confirmed through correlations with SF-36v2.
- HAE-QoL scores effectively differentiated between severity groups, prophylaxis use, and psychological care status.
Conclusions:
- The internationally validated HAE-QoL questionnaire exhibits robust reliability and validity.
- The HAE-QoL is now available in 18 languages, facilitating global assessment of HRQoL in C1-INH-HAE patients.
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.
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