Content validation and psychometric evaluation of the Angioedema Quality of Life Questionnaire for hereditary angioedema.
In: Journal of Patient-Reported Outcomes, Jg. 7 (2023-06-01), Heft 1, S. 1-11
Online
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Zugriff:
Background: There is considerable burden of illness in hereditary angioedema (HAE). However, instruments to assess health-related quality of life (HRQoL) in HAE are limited. The Angioedema Quality of Life Questionnaire (AE-QoL) was developed to measure HRQoL in patients with recurrent angioedema; the validity of the AE-QoL in patients with HAE is described. Methods: To identify disease-related experiences with a focus on the impact of HAE on HRQoL, interviews were conducted with a group of clinician experts and patients with HAE from Canada, France, Germany, Spain, the United Kingdom, and the United States, along with a targeted literature review. Concepts were mapped to the AE-QoL to assess item relevance, interpretation, and conceptual coverage. Cognitive interviews assessed item clarity and relevance. A psychometric validation was performed using data from a phase 3 trial. Results: Interviews were conducted with seven clinicians and 40 adult patients. Patients reported 35 unique impacts of HAE on their lives, the most frequent being on work/school, social relationships, physical activities, and emotions, particularly fear/worrying and anxiety. Saturation for these impacts was reached, and all concepts covered in the AE-QoL were reported during the interviews. Patients agreed that the questionnaire items and response options were clear and relevant, and the 4-week recall period was appropriate. The psychometric validation included data from 64 patients. For AE-QoL total scores, excellent internal consistency (Cronbach's alpha > 0.90), test-retest reliability (intraclass coefficient > 0.80), convergent validity with the Sheehan Disability Scale (r = 0.663), divergent validity with the EQ-5D-5L index (r = 0.292) and EQ-VAS (r = 0.337), and known-groups validity (p < 0.0001; ɳ2 = 0.56) were demonstrated. Conclusions: Qualitative and psychometric analyses showed that the AE-QoL is a reliable and valid instrument for measuring HRQoL in adult patients with HAE from six countries. [ABSTRACT FROM AUTHOR]
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Content validation and psychometric evaluation of the Angioedema Quality of Life Questionnaire for hereditary angioedema.
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Autor/in / Beteiligte Person: | Vanya, Magdalena ; Watt, Maureen ; Shahraz, Saeid ; Kosmas, Charlotte E. ; Rhoten, Stephanie ; Costa-Cabral, Sara ; Mendivil, Joan ; Devercelli, Giovanna ; Weller, Karsten |
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Zeitschrift: | Journal of Patient-Reported Outcomes, Jg. 7 (2023-06-01), Heft 1, S. 1-11 |
Veröffentlichung: | 2023 |
Medientyp: | academicJournal |
ISSN: | 2509-8020 (print) |
DOI: | 10.1186/s41687-023-00576-w |
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