A Patient-Centered Description of Severe Asthma: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR)

Tonya A Winders; Andrew M Wilson; Monica J Fletcher; Anthony McGuinness; David B Price

doi:10.1007/s40271-019-00371-0

A Patient-Centered Description of Severe Asthma: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR)

Tonya A Winders (Corresponding Author), Andrew M Wilson, Monica J Fletcher, Anthony McGuinness, David B Price

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

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Abstract

BACKGROUND: Although severe asthma can be life-threatening, many patients are unaware they have this condition.

OBJECTIVES: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR) is a novel, multidisciplinary working group aiming to develop and disseminate a global, patient-centered description of severe asthma to improve patient understanding of severe asthma and effect a change in patient behavior whereby patients are encouraged to visit their healthcare professional, when appropriate.

METHODS: Current definitions from patient organization websites, asthma guidelines, and medication information for key asthma drugs were assessed and informed a multidisciplinary working group, convened to identify common concepts and terminology used to define severe asthma. A patient-centered description of severe asthma and patient checklist were drafted based on working-group discussions and reviewed by an external behavioral scientist for patient understanding and relevance. These were tested using an online US/Canadian survey.

RESULTS: The patient-centered description of severe asthma and patient checklist were reviewed and re-drafted by the authors. The text was simplified following the behavioral-scientist review. The survey (n = 153) included 105 patients with severe asthma. Of those with severe asthma, 92.2% of patients reported that the description was consistent with their experiences of severe asthma and 92.6% of patients reported that the PULSAR initiative would encourage them to visit their healthcare provider.

CONCLUSION: A patient-centered description of severe asthma has been developed and tested using patients with severe asthma; this description will allow patients to assess whether they might have severe asthma and prompt them to visit their healthcare provider, if appropriate.

Original language	English
Pages (from-to)	539-549
Number of pages	11
Journal	The Patient - Patient-Centered Outcomes Research
Volume	12
Issue number	5
Early online date	17 Jul 2019
DOIs	https://doi.org/10.1007/s40271-019-00371-0
Publication status	Published - Oct 2019

Bibliographical note

The PULSAR working group (including the assessment of current severe asthma definitions, travel and accommodation costs, and honoraria for the attendees) was funded by a direct in-kind agency support grant from GSK. Neither the working group members nor authors received any direct compensation related to the development of this manuscript. Editorial support was funded by GSK, through a direct in-kind agency support grant, and Global Allergy Asthma Patient Platform (GAAPP), a not-for-profit network representing over 40 nonprofit patient organizations worldwide (registered in Austria).

Keywords

DEFINITION
GUIDELINES

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A Patient-Centered Description of Severe Asthma: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR). / Winders, Tonya A (Corresponding Author); Wilson, Andrew M; Fletcher, Monica J et al.
In: The Patient - Patient-Centered Outcomes Research, Vol. 12, No. 5, 10.2019, p. 539-549.

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

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abstract = "BACKGROUND: Although severe asthma can be life-threatening, many patients are unaware they have this condition.OBJECTIVES: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR) is a novel, multidisciplinary working group aiming to develop and disseminate a global, patient-centered description of severe asthma to improve patient understanding of severe asthma and effect a change in patient behavior whereby patients are encouraged to visit their healthcare professional, when appropriate.METHODS: Current definitions from patient organization websites, asthma guidelines, and medication information for key asthma drugs were assessed and informed a multidisciplinary working group, convened to identify common concepts and terminology used to define severe asthma. A patient-centered description of severe asthma and patient checklist were drafted based on working-group discussions and reviewed by an external behavioral scientist for patient understanding and relevance. These were tested using an online US/Canadian survey.RESULTS: The patient-centered description of severe asthma and patient checklist were reviewed and re-drafted by the authors. The text was simplified following the behavioral-scientist review. The survey (n = 153) included 105 patients with severe asthma. Of those with severe asthma, 92.2% of patients reported that the description was consistent with their experiences of severe asthma and 92.6% of patients reported that the PULSAR initiative would encourage them to visit their healthcare provider.CONCLUSION: A patient-centered description of severe asthma has been developed and tested using patients with severe asthma; this description will allow patients to assess whether they might have severe asthma and prompt them to visit their healthcare provider, if appropriate.",

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AU - McGuinness, Anthony

AU - Price, David B

N1 - The PULSAR working group (including the assessment of current severe asthma definitions, travel and accommodation costs, and honoraria for the attendees) was funded by a direct in-kind agency support grant from GSK. Neither the working group members nor authors received any direct compensation related to the development of this manuscript. Editorial support was funded by GSK, through a direct in-kind agency support grant, and Global Allergy Asthma Patient Platform (GAAPP), a not-for-profit network representing over 40 nonprofit patient organizations worldwide (registered in Austria).

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N2 - BACKGROUND: Although severe asthma can be life-threatening, many patients are unaware they have this condition.OBJECTIVES: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR) is a novel, multidisciplinary working group aiming to develop and disseminate a global, patient-centered description of severe asthma to improve patient understanding of severe asthma and effect a change in patient behavior whereby patients are encouraged to visit their healthcare professional, when appropriate.METHODS: Current definitions from patient organization websites, asthma guidelines, and medication information for key asthma drugs were assessed and informed a multidisciplinary working group, convened to identify common concepts and terminology used to define severe asthma. A patient-centered description of severe asthma and patient checklist were drafted based on working-group discussions and reviewed by an external behavioral scientist for patient understanding and relevance. These were tested using an online US/Canadian survey.RESULTS: The patient-centered description of severe asthma and patient checklist were reviewed and re-drafted by the authors. The text was simplified following the behavioral-scientist review. The survey (n = 153) included 105 patients with severe asthma. Of those with severe asthma, 92.2% of patients reported that the description was consistent with their experiences of severe asthma and 92.6% of patients reported that the PULSAR initiative would encourage them to visit their healthcare provider.CONCLUSION: A patient-centered description of severe asthma has been developed and tested using patients with severe asthma; this description will allow patients to assess whether they might have severe asthma and prompt them to visit their healthcare provider, if appropriate.

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JO - The Patient - Patient-Centered Outcomes Research

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A Patient-Centered Description of Severe Asthma: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR)

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