Development of a health-related quality of life instrument for patients with hereditary angioedema living in the United States

Paula J. Busse; Sandra C. Christiansen; Janette M. Birmingham; Jessica R. Overbey; Aleena Banerji; Iris M. Otani; William Lumry; Anna Goryachkovsky; Bruce L. Zuraw

doi:10.1016/j.jaip.2018.11.042

Development of a health-related quality of life instrument for patients with hereditary angioedema living in the United States

Paula J. Busse, Sandra C. Christiansen, Janette M. Birmingham, Jessica R. Overbey, Aleena Banerji, Iris M. Otani, William Lumry, Anna Goryachkovsky, Bruce L. Zuraw

Research output: Contribution to journal › Article › peer-review

18 Scopus citations

Original language	English
Pages (from-to)	1679-1683.e7
Journal	Journal of Allergy and Clinical Immunology: In Practice
Volume	7
Issue number	5
DOIs	https://doi.org/10.1016/j.jaip.2018.11.042
State	Published - 1 May 2019

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10.1016/j.jaip.2018.11.042

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Busse, P. J., Christiansen, S. C., Birmingham, J. M., Overbey, J. R., Banerji, A., Otani, I. M., Lumry, W., Goryachkovsky, A., & Zuraw, B. L. (2019). Development of a health-related quality of life instrument for patients with hereditary angioedema living in the United States. Journal of Allergy and Clinical Immunology: In Practice, 7(5), 1679-1683.e7. https://doi.org/10.1016/j.jaip.2018.11.042

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title = "Development of a health-related quality of life instrument for patients with hereditary angioedema living in the United States",

author = "Busse, {Paula J.} and Christiansen, {Sandra C.} and Birmingham, {Janette M.} and Overbey, {Jessica R.} and Aleena Banerji and Otani, {Iris M.} and William Lumry and Anna Goryachkovsky and Zuraw, {Bruce L.}",

note = "Funding Information: We thank the Hereditary Angioedema Association (HAEA) and all of the patients who participated in the development of the HAEA-QoL. We also thank Dr. Carol Horowitz (supported by grant UL1 TR001433 , from the National Center for Advancing Translational Sciences , National Institutes of Health) for her invaluable help in constructing an HRQoL tool. Funding Information: This work was funded by Hereditary Angioedema Association (HAEA).Conflicts of interest: P. J. Busse attended the HAEA meetings; has received consultancy fees from CSL Behring, Pharming, Pearl Therapeutics, BioCryst, and GlaxoSmithKline; has received consultancy fees and research support from Shire; has received lecture fees from CVS Health; and has provided legal consulting for Levin, Riback Law Group. S. C. Christiansen is on the advisory boards for BioCryst, CSL, and Shire, none relevant to the current article. A. Banerji is on the advisory boards for Shire, BioCryst, CSL, Pharming, and KalVista; and has received research support from Shire and BioCryst. W. Lumry has received consultancy fees and travel support from CSL; has received consultancy fees from Shire and Adverum; has received research support from Pharming; is on the BioCryst Advisory Board; and has received travel support from HAEA. B. L. Zuraw has received consultancy fees from Shire, CSL Behring, BioCryst, Adverum, and Alnylam; has received research support in the form of laboratory service contract from Ionis; has a patent pending with University of California San Diego (UCSD); receives royalties from UpToDate; and attended the US HAEA meetings. The rest of the authors declare that they have no relevant conflicts of interest.We thank the Hereditary Angioedema Association (HAEA) and all of the patients who participated in the development of the HAEA-QoL. We also thank Dr. Carol Horowitz (supported by grant UL1 TR001433, from the National Center for Advancing Translational Sciences, National Institutes of Health) for her invaluable help in constructing an HRQoL tool. This work was funded by Hereditary Angioedema Association (HAEA). Conflicts of interest: P. J. Busse attended the HAEA meetings; has received consultancy fees from CSL Behring, Pharming, Pearl Therapeutics, BioCryst, and GlaxoSmithKline; has received consultancy fees and research support from Shire; has received lecture fees from CVS Health; and has provided legal consulting for Levin, Riback Law Group. S. C. Christiansen is on the advisory boards for BioCryst, CSL, and Shire, none relevant to the current article. A. Banerji is on the advisory boards for Shire, BioCryst, CSL, Pharming, and KalVista; and has received research support from Shire and BioCryst. W. Lumry has received consultancy fees and travel support from CSL; has received consultancy fees from Shire and Adverum; has received research support from Pharming; is on the BioCryst Advisory Board; and has received travel support from HAEA. B. L. Zuraw has received consultancy fees from Shire, CSL Behring, BioCryst, Adverum, and Alnylam; has received research support in the form of laboratory service contract from Ionis; has a patent pending with University of California San Diego (UCSD); receives royalties from UpToDate; and attended the US HAEA meetings. The rest of the authors declare that they have no relevant conflicts of interest. Funding Information: This work was funded by Hereditary Angioedema Association (HAEA). ",

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Busse, PJ, Christiansen, SC, Birmingham, JM, Overbey, JR, Banerji, A, Otani, IM, Lumry, W, Goryachkovsky, A & Zuraw, BL 2019, 'Development of a health-related quality of life instrument for patients with hereditary angioedema living in the United States', Journal of Allergy and Clinical Immunology: In Practice, vol. 7, no. 5, pp. 1679-1683.e7. https://doi.org/10.1016/j.jaip.2018.11.042

Development of a health-related quality of life instrument for patients with hereditary angioedema living in the United States. / Busse, Paula J.; Christiansen, Sandra C.; Birmingham, Janette M. et al.
In: Journal of Allergy and Clinical Immunology: In Practice, Vol. 7, No. 5, 01.05.2019, p. 1679-1683.e7.

Research output: Contribution to journal › Article › peer-review

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T1 - Development of a health-related quality of life instrument for patients with hereditary angioedema living in the United States

AU - Busse, Paula J.

AU - Christiansen, Sandra C.

AU - Birmingham, Janette M.

AU - Overbey, Jessica R.

AU - Banerji, Aleena

AU - Otani, Iris M.

AU - Lumry, William

AU - Goryachkovsky, Anna

AU - Zuraw, Bruce L.

N1 - Funding Information: We thank the Hereditary Angioedema Association (HAEA) and all of the patients who participated in the development of the HAEA-QoL. We also thank Dr. Carol Horowitz (supported by grant UL1 TR001433 , from the National Center for Advancing Translational Sciences , National Institutes of Health) for her invaluable help in constructing an HRQoL tool. Funding Information: This work was funded by Hereditary Angioedema Association (HAEA).Conflicts of interest: P. J. Busse attended the HAEA meetings; has received consultancy fees from CSL Behring, Pharming, Pearl Therapeutics, BioCryst, and GlaxoSmithKline; has received consultancy fees and research support from Shire; has received lecture fees from CVS Health; and has provided legal consulting for Levin, Riback Law Group. S. C. Christiansen is on the advisory boards for BioCryst, CSL, and Shire, none relevant to the current article. A. Banerji is on the advisory boards for Shire, BioCryst, CSL, Pharming, and KalVista; and has received research support from Shire and BioCryst. W. Lumry has received consultancy fees and travel support from CSL; has received consultancy fees from Shire and Adverum; has received research support from Pharming; is on the BioCryst Advisory Board; and has received travel support from HAEA. B. L. Zuraw has received consultancy fees from Shire, CSL Behring, BioCryst, Adverum, and Alnylam; has received research support in the form of laboratory service contract from Ionis; has a patent pending with University of California San Diego (UCSD); receives royalties from UpToDate; and attended the US HAEA meetings. The rest of the authors declare that they have no relevant conflicts of interest.We thank the Hereditary Angioedema Association (HAEA) and all of the patients who participated in the development of the HAEA-QoL. We also thank Dr. Carol Horowitz (supported by grant UL1 TR001433, from the National Center for Advancing Translational Sciences, National Institutes of Health) for her invaluable help in constructing an HRQoL tool. This work was funded by Hereditary Angioedema Association (HAEA). Conflicts of interest: P. J. Busse attended the HAEA meetings; has received consultancy fees from CSL Behring, Pharming, Pearl Therapeutics, BioCryst, and GlaxoSmithKline; has received consultancy fees and research support from Shire; has received lecture fees from CVS Health; and has provided legal consulting for Levin, Riback Law Group. S. C. Christiansen is on the advisory boards for BioCryst, CSL, and Shire, none relevant to the current article. A. Banerji is on the advisory boards for Shire, BioCryst, CSL, Pharming, and KalVista; and has received research support from Shire and BioCryst. W. Lumry has received consultancy fees and travel support from CSL; has received consultancy fees from Shire and Adverum; has received research support from Pharming; is on the BioCryst Advisory Board; and has received travel support from HAEA. B. L. Zuraw has received consultancy fees from Shire, CSL Behring, BioCryst, Adverum, and Alnylam; has received research support in the form of laboratory service contract from Ionis; has a patent pending with University of California San Diego (UCSD); receives royalties from UpToDate; and attended the US HAEA meetings. The rest of the authors declare that they have no relevant conflicts of interest. Funding Information: This work was funded by Hereditary Angioedema Association (HAEA).

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