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  1. Article: The COPD Foundation's COPD360Net Initiative Approach to Patient-Centric Drug Development: A Case Study in Using Patient Surveys to Inform New Treatments for Viral Respiratory Infections.

    Tal-Singer, Ruth / Miller, Bruce E / Rommes, Jean M / Luttmann, Mark A / Demaison, Christophe / Bradley Drummond, M / Pasquale, Cara B

    Journal of patient experience

    2023  Volume 10, Page(s) 23743735231151554

    Abstract: Patient-centric drug development is crucial to creating treatments that address unmet patient needs but is often ignored. The COPD Foundation's ... ...

    Abstract Patient-centric drug development is crucial to creating treatments that address unmet patient needs but is often ignored. The COPD Foundation's COPD360Net
    Language English
    Publishing date 2023-01-26
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2857285-3
    ISSN 2374-3743 ; 2374-3735
    ISSN (online) 2374-3743
    ISSN 2374-3735
    DOI 10.1177/23743735231151554
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article: Self-reported COPD Medication Use and Adherence in the COPD Foundation Patient- Powered Registry Network.

    Pasquale, Cara B / Choate, Radmila / McCreary, Gretchen / Mularski, Richard A / Clark, William / Houlihan, MaryEllen / Malanga, Elisha / Yawn, Barbara P

    Chronic obstructive pulmonary diseases (Miami, Fla.)

    2021  Volume 8, Issue 4, Page(s) 474–487

    Abstract: Purpose: Pharmacotherapy is one cornerstone of Chronic Obstructive Pulmonary Disease (COPD) management. Published U.S. data seldom includes patient-reported COPD medication use and adherence. We add this patient perspective to the commonly reported ... ...

    Abstract Purpose: Pharmacotherapy is one cornerstone of Chronic Obstructive Pulmonary Disease (COPD) management. Published U.S. data seldom includes patient-reported COPD medication use and adherence. We add this patient perspective to the commonly reported administrative prescribing and fill data.
    Methods: This survey study used inhaler and nebulizer pictures and lists of oral COPD medications to query members of the COPD Foundation Patient-Powered Research Network, a national self-reported online registry. Medications used, adherence, inhaler education, cost concerns, previous exacerbations, and COPD Assessment Test scores were assessed and summarized using simple descriptive statistics and hazard ratios controlling for age, gender, and disease burden.
    Results: Respondents mean age was 68 years, 60% were women, >69% with the COPD Assessment Test (CAT) scores >15, and >50% reported 2 or more exacerbations in the past 12 months. Overall, >98% used one or more inhaled COPD medications, 7.6% rescue inhaler only, 17.8% used long-acting bronchodilator only therapy (11.1% dual), and 72.8% using corticosteroid therapies, including 53% triple therapy. Nebulizers were used by 59.4% and 34.8% use oral COPD medications. Reported adherence rates were high (80.1%), but 41% reported trouble paying for medications, with 20.1% reported missing medications due to cost.
    Conclusions: In this population, COPD had a high burden with >50% of respondents using triple therapy, and one in eight maintenance oral corticosteroids. Self-reported adherence was high, but with significant cost concerns reported resulting in missed medications.
    Language English
    Publishing date 2021-09-08
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2771715-X
    ISSN 2372-952X
    ISSN 2372-952X
    DOI 10.15326/jcopdf.2021.0252
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article: The Burden of Cough and Phlegm in People With COPD: A COPD Patient-Powered Research Network Study.

    Choate, Radmila / Pasquale, Cara B / Parada, Nereida A / Prieto-Centurion, Valentin / Mularski, Richard A / Yawn, Barbara P

    Chronic obstructive pulmonary diseases (Miami, Fla.)

    2020  Volume 7, Issue 1, Page(s) 49–59

    Abstract: Rationale: Cough and phlegm are common symptoms of chronic obstructive pulmonary disease (COPD) and may significantly affect quality of life. This study assessed the burden of cough and phlegm on clinical outcomes and quality of life among people with a ...

    Abstract Rationale: Cough and phlegm are common symptoms of chronic obstructive pulmonary disease (COPD) and may significantly affect quality of life. This study assessed the burden of cough and phlegm on clinical outcomes and quality of life among people with a self-reported physician diagnosis of COPD.
    Methods: Patient-reported data from the COPD Foundation's Patient-Powered Research Network (COPD PPRN) were utilized. Cough and phlegm severity and frequency were assessed by responses to questions on the COPD Assessment Test (CAT) and categorized into none/low, moderate and severe. Quality of life domains were evaluated using the Patient-Reported Outcome Measurement Information System (PROMIS-29). Associations between cough and phlegm levels and PROMIS-29 domains were examined using multivariate analysis of variance (MANOVA).
    Results: The 5286 participants were average age 64.4 years (SD=11.4), 87.9% white, 60.4% female, 51.2% married, and 42.2% with caregivers. Approximately three-fourths of the participants had moderate or severe cough or phlegm levels. Respondents with moderate and high cough or phlegm had significantly worse dyspnea (
    Conclusions: In this group of people with COPD, higher levels of cough and phlegm are associated with worse clinical and quality of life outcomes.
    Language English
    Publishing date 2020-01-30
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2771715-X
    ISSN 2372-952X
    ISSN 2372-952X
    DOI 10.15326/jcopdf.7.1.2019.0146
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article: Patient-Reported Consequences of Community-Acquired Pneumonia in Patients with Chronic Obstructive Pulmonary Disease.

    Pasquale, Cara B / Vietri, Jeffrey / Choate, Radmila / McDaniel, Angee / Sato, Reiko / Ford, Kimbal D / Malanga, Elisha / Yawn, Barbara P

    Chronic obstructive pulmonary diseases (Miami, Fla.)

    2019  Volume 6, Issue 2, Page(s) 132–144

    Abstract: Community acquired pneumonia (CAP) carries high morbidity, mortality, and economic burden, which is even higher in adults diagnosed with chronic obstructive pulmonary disease (COPD). While several studies have assessed the clinical burden and mortality ... ...

    Abstract Community acquired pneumonia (CAP) carries high morbidity, mortality, and economic burden, which is even higher in adults diagnosed with chronic obstructive pulmonary disease (COPD). While several studies have assessed the clinical burden and mortality risk of CAP and COPD, very few studies focus on CAP burden from a COPD patient perspective. Individuals recently diagnosed with CAP and with pre-existing COPD were recruited through the COPD Foundation. The CAP Burden of Illness Questionnaire (CAP-BIQ), a content validated questionnaire assessing CAP symptomatology, duration of symptoms and CAP impact on work, activities and family, was administered at baseline and at 30-days follow-up. Of the 490 participants recruited, 481 had data sufficient for analysis. The prevalence of respiratory-related symptoms was very high (>90%) at the time of diagnosis with other generalized symptoms such as fatigue, trouble sleeping, headaches and confusion present in more than 60% of participants. Mean duration of symptoms varied from approximately 2 weeks for headaches and fever to more than a month for fatigue, wheezing, dyspnea, and cough. Employed participants missed an average of 21 days of work and those not employed missed 36 days of usual activities. Over 84% required help from family, friends or care givers. CAP is a serious and burdensome condition for people with COPD, a condition that can impair activities for weeks, frequently requires care from family or friends, and includes lingering symptoms. The patient-reported impact of CAP reported in this study underscores the need for prevention strategies in this population.
    Language English
    Publishing date 2019-04-09
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2771715-X
    ISSN 2372-952X
    ISSN 2372-952X
    DOI 10.15326/jcopdf.6.2.2018.0144
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article: Pilot Study of a Patient Experience with an ELLIPTA Inhaler Electronic Medication Monitor and Associated Integrated System: A Prospective Observational Study Using the COPD Patient-Powered Research Network.

    Yawn, Barbara P / McCreary, Gretchen M / Linnell, John A / Pasquale, Cara B / Malanga, Elisha / Choate, Radmila / Stempel, David A / Gondalia, Rahul / Kaye, Leanne / Collison, Kathryn A / Wu, Benjamin S / Gratie, Daniel / Stanford, Richard H / Tomlinson, Ryan

    Chronic obstructive pulmonary diseases (Miami, Fla.)

    2021  Volume 8, Issue 4, Page(s) 488–501

    Abstract: Background: Electronic medication monitors (EMMs) are associated with decreased rescue inhaler use, symptom burden, and increased medication adherence in asthma. However, the use of EMMs in people with chronic obstructive pulmonary disease (COPD) using ... ...

    Abstract Background: Electronic medication monitors (EMMs) are associated with decreased rescue inhaler use, symptom burden, and increased medication adherence in asthma. However, the use of EMMs in people with chronic obstructive pulmonary disease (COPD) using the ELLIPTA dry powder inhaler has not been studied.
    Methods: This was an open-label, single-arm, prospective observational study of EMMs and associated application (app) use over 12 weeks and up to 24 weeks (April-October 2019) in people with self-reported COPD aged ≥40 years enrolled in the COPD Patient-Powered Research Network, using an ELLIPTA inhaler. The primary outcome was daily active use of the app over 12 weeks. Treatment adherence, rescue inhaler use, and participant satisfaction were assessed over the same period.
    Results: Among the 122 participants, mean (standard deviation [SD]) proportion of days participants opened the app was 59.5% (31.4), 51.1% (33.5) and 41.3% (34.2) for Days 1-30, 31-60 and 61-90, respectively. Mean (SD) adherence to maintenance medication remained stable: 80.2% (22.7) and 79.9% (26.7) for Days 1-30 and 61-90, respectively. In participants using a rescue inhaler and EMM, mean (SD) rescue-free days increased from 18.5 (10.0; Days 1-30, n=51) to 21.4 (9.6; Days 61-90, n=48). Participants reported high levels of confidence in using the EMM, valued app reminders highly and reported high system satisfaction (mean [SD] scale: 1=low, 5=high; 4.6 [1.1], 4.3 [1.1] and 4.1 [1.1], respectively).
    Conclusions: Use of an ELLIPTA EMM with frequent app engagement, high participant satisfaction and decreased rescue medication use may aid COPD management.
    Language English
    Publishing date 2021-10-05
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2771715-X
    ISSN 2372-952X
    ISSN 2372-952X
    DOI 10.15326/jcopdf.2021.0218
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article ; Online: Blood Eosinophil Counts in Clinical Trials for Chronic Obstructive Pulmonary Disease.

    Singh, Dave / Bafadhel, Mona / Brightling, Christopher E / Sciurba, Frank C / Curtis, Jeffrey L / Martinez, Fernando J / Pasquale, Cara B / Merrill, Debora D / Metzdorf, Norbert / Petruzzelli, Stefano / Tal-Singer, Ruth / Compton, Christopher / Rennard, Stephen / Martin, Ubaldo J

    American journal of respiratory and critical care medicine

    2020  Volume 202, Issue 5, Page(s) 660–671

    MeSH term(s) Clinical Trials as Topic ; Eosinophils/pathology ; Humans ; Leukocyte Count ; Pulmonary Disease, Chronic Obstructive/diagnosis
    Language English
    Publishing date 2020-04-13
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Review
    ZDB-ID 1180953-x
    ISSN 1535-4970 ; 0003-0805 ; 1073-449X
    ISSN (online) 1535-4970
    ISSN 0003-0805 ; 1073-449X
    DOI 10.1164/rccm.201912-2384PP
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Electronic Health Records and Pulmonary Function Data: Developing an Interoperability Roadmap. An Official American Thoracic Society Workshop Report.

    McCormack, Meredith C / Bascom, Rebecca / Brandt, Michael / Burgos, Felip / Butler, Sam / Caggiano, Christopher / Dimmock, Anne E F / Fineberg, Adrian / Goldstein, Jeffrey / Guzman, Francisco C / Halldin, Cara N / Johnson, J D / Kerby, Gwendolyn S / Krishnan, Jerry A / Kurth, Laura / Morgan, Gareth / Mularski, Richard A / Pasquale, Cara B / Ryu, Julie /
    Sinclair, Tom / Stachowicz, Nadia F / Taite, Ann / Tilles, Jacob / Truta, Jennifer R / Weissman, David N / Wu, Tianshi David / Yawn, Barbara P / Drummond, M Bradley

    Annals of the American Thoracic Society

    2020  Volume 18, Issue 1, Page(s) 1–11

    Abstract: A workshop "Electronic Health Records and Pulmonary Function Data: Developing an Interoperability Roadmap" was held at the American Thoracic Society 2019 International Conference. "Interoperability" is defined as is the ability of different information- ... ...

    Abstract A workshop "Electronic Health Records and Pulmonary Function Data: Developing an Interoperability Roadmap" was held at the American Thoracic Society 2019 International Conference. "Interoperability" is defined as is the ability of different information-technology systems and software applications to directly communicate, exchange data, and use the information that has been exchanged. At present, pulmonary function test (PFT) equipment is not required to be interoperable with other clinical data systems, including electronic health records (EHRs). For this workshop, we assembled a diverse group of experts and stakeholders, including representatives from patient-advocacy groups, adult and pediatric general and pulmonary medicine, informatics, government and healthcare organizations, pulmonary function laboratories, and EHR and PFT equipment and software companies. The participants were tasked with two overarching Aobjectives:
    MeSH term(s) Electronic Health Records ; Humans ; Information Systems ; Respiratory Physiological Phenomena ; United States
    Language English
    Publishing date 2020-12-24
    Publishing country United States
    Document type Journal Article ; Research Support, N.I.H., Extramural
    ZDB-ID 2717461-X
    ISSN 2325-6621 ; 1943-5665 ; 2325-6621
    ISSN (online) 2325-6621 ; 1943-5665
    ISSN 2325-6621
    DOI 10.1513/AnnalsATS.202010-1318ST
    Database MEDical Literature Analysis and Retrieval System OnLINE

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