Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults

HAE-QoL

Nieves Prior, Eduardo Remor, Elia Pérez-Fernández, Magdalena Caminoa, Carmen Gómez-Traseira, Francisco Gayá, Anne Aabom, Werner Aberer, Stephen Betschel, Isabelle Boccon-Gibod, Laurence Bouillet, Anette Bygum, Dorottya Csuka, H. Farkas, Maria Gomide, Anete Grumach, Iris Leibovich, Alejandro Malbran, Dumitru Moldovan, Eniko Mihaly & 9 others Krystyna Obtulowicz, Cecilia Perpén, Adriane Peveling-Oberhag, Grzegorz Porebski, Celine Rayonne Chavannes, Avner Reshef, Petra Staubach, Michaela Wiednig, Teresa Caballero

Research output: Contribution to journalArticle

14 Citations (Scopus)

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.

Original languageEnglish
JournalJournal of Allergy and Clinical Immunology: In Practice
DOIs
Publication statusAccepted/In press - Jul 11 2015

Fingerprint

Hereditary Angioedemas
Psychometrics
Quality of Life
Health Surveys
Reproducibility of Results
Validation Studies
Spain
Statistical Factor Analysis
Psychiatry
Mental Health
Language
Surveys and Questionnaires
Psychology
Health

Keywords

  • Adults
  • C1 inhibitor
  • Disease-specific
  • HAE-QoL
  • Hereditary angioedema
  • Psychometric
  • Quality of life
  • Questionnaire
  • SF-36v2
  • Validation studies

ASJC Scopus subject areas

  • Immunology and Allergy

Cite this

Prior, N., Remor, E., Pérez-Fernández, E., Caminoa, M., Gómez-Traseira, C., Gayá, F., ... Caballero, T. (Accepted/In press). Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults: HAE-QoL. Journal of Allergy and Clinical Immunology: In Practice. https://doi.org/10.1016/j.jaip.2015.12.010

Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults : HAE-QoL. / Prior, Nieves; Remor, Eduardo; Pérez-Fernández, Elia; Caminoa, Magdalena; Gómez-Traseira, Carmen; Gayá, Francisco; Aabom, Anne; Aberer, Werner; Betschel, Stephen; Boccon-Gibod, Isabelle; Bouillet, Laurence; Bygum, Anette; Csuka, Dorottya; Farkas, H.; Gomide, Maria; Grumach, Anete; Leibovich, Iris; Malbran, Alejandro; Moldovan, Dumitru; Mihaly, Eniko; Obtulowicz, Krystyna; Perpén, Cecilia; Peveling-Oberhag, Adriane; Porebski, Grzegorz; Chavannes, Celine Rayonne; Reshef, Avner; Staubach, Petra; Wiednig, Michaela; Caballero, Teresa.

In: Journal of Allergy and Clinical Immunology: In Practice, 11.07.2015.

Research output: Contribution to journalArticle

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 2015, 'Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults: HAE-QoL', Journal of Allergy and Clinical Immunology: In Practice. https://doi.org/10.1016/j.jaip.2015.12.010
Prior, Nieves ; Remor, Eduardo ; Pérez-Fernández, Elia ; Caminoa, Magdalena ; Gómez-Traseira, Carmen ; Gayá, Francisco ; Aabom, Anne ; Aberer, Werner ; Betschel, Stephen ; Boccon-Gibod, Isabelle ; Bouillet, Laurence ; Bygum, Anette ; Csuka, Dorottya ; Farkas, H. ; Gomide, Maria ; Grumach, Anete ; Leibovich, Iris ; Malbran, Alejandro ; Moldovan, Dumitru ; Mihaly, Eniko ; Obtulowicz, Krystyna ; Perpén, Cecilia ; Peveling-Oberhag, Adriane ; Porebski, Grzegorz ; Chavannes, Celine Rayonne ; Reshef, Avner ; Staubach, Petra ; Wiednig, Michaela ; Caballero, Teresa. / Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults : HAE-QoL. In: Journal of Allergy and Clinical Immunology: In Practice. 2015.
@article{d2c620cc17fd4c09aac81e7c4aff1136,
title = "Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults: HAE-QoL",
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.",
keywords = "Adults, C1 inhibitor, Disease-specific, HAE-QoL, Hereditary angioedema, Psychometric, Quality of life, Questionnaire, SF-36v2, Validation studies",
author = "Nieves Prior and Eduardo Remor and Elia P{\'e}rez-Fern{\'a}ndez and Magdalena Caminoa and Carmen G{\'o}mez-Traseira and Francisco Gay{\'a} and Anne Aabom and Werner Aberer and Stephen Betschel and Isabelle Boccon-Gibod and Laurence Bouillet and Anette Bygum and Dorottya Csuka and H. Farkas and Maria Gomide and Anete Grumach and Iris Leibovich and Alejandro Malbran and Dumitru Moldovan and Eniko Mihaly and Krystyna Obtulowicz and Cecilia Perp{\'e}n and Adriane Peveling-Oberhag and Grzegorz Porebski and Chavannes, {Celine Rayonne} and Avner Reshef and Petra Staubach and Michaela Wiednig and Teresa Caballero",
year = "2015",
month = "7",
day = "11",
doi = "10.1016/j.jaip.2015.12.010",
language = "English",
journal = "Journal of Allergy and Clinical Immunology: In Practice",
issn = "2213-2198",
publisher = "Elsevier",

}

TY - JOUR

T1 - Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults

T2 - HAE-QoL

AU - Prior, Nieves

AU - Remor, Eduardo

AU - Pérez-Fernández, Elia

AU - Caminoa, Magdalena

AU - Gómez-Traseira, Carmen

AU - Gayá, Francisco

AU - Aabom, Anne

AU - Aberer, Werner

AU - Betschel, Stephen

AU - Boccon-Gibod, Isabelle

AU - Bouillet, Laurence

AU - Bygum, Anette

AU - Csuka, Dorottya

AU - Farkas, H.

AU - Gomide, Maria

AU - Grumach, Anete

AU - Leibovich, Iris

AU - Malbran, Alejandro

AU - Moldovan, Dumitru

AU - Mihaly, Eniko

AU - Obtulowicz, Krystyna

AU - Perpén, Cecilia

AU - Peveling-Oberhag, Adriane

AU - Porebski, Grzegorz

AU - Chavannes, Celine Rayonne

AU - Reshef, Avner

AU - Staubach, Petra

AU - Wiednig, Michaela

AU - Caballero, Teresa

PY - 2015/7/11

Y1 - 2015/7/11

N2 - 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.

AB - 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.

KW - Adults

KW - C1 inhibitor

KW - Disease-specific

KW - HAE-QoL

KW - Hereditary angioedema

KW - Psychometric

KW - Quality of life

KW - Questionnaire

KW - SF-36v2

KW - Validation studies

UR - http://www.scopus.com/inward/record.url?scp=84960977611&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84960977611&partnerID=8YFLogxK

U2 - 10.1016/j.jaip.2015.12.010

DO - 10.1016/j.jaip.2015.12.010

M3 - Article

JO - Journal of Allergy and Clinical Immunology: In Practice

JF - Journal of Allergy and Clinical Immunology: In Practice

SN - 2213-2198

ER -