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Support Care for the Pulmonary Hypertension Patient

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Pulmonary Hypertension

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Abstract

Pulmonary arterial hypertension (PAH) patients require a multi-disciplinary care strategy that includes education, support and frequent clinical assessment. Central to the care of PAH patients is a specially trained team of allied health care professionals who provide a wide array of support and education for patients and their caregivers. Because the majority of PAH management occurs outside routine clinical visits, it is essential to have an expert pulmonary hypertension clinical care coordinator (PHC) engage in frequent communication with patients. Ongoing surveillance of symptoms, response to medications, oxygen needs, diet, exercise, emotional wellbeing, and financial needs are paramount to optimizing and maintaining clinical status. Educating patients, caregivers and non-pulmonary hypertension (PH) clinicians about routine testing and disease management is one of the primary roles of the PHC. Close monitoring and involvement in the care of hospitalized patients by the PH team is critical to providing safe and high quality care. Thoughtful discharge assessment and planning will provide for a smooth transition to post-hospital care and potentially prevent avoidable hospitalizations. Ensuring access to PAH-specific medications is an essential aspect of supportive care for the PAH patient. Even when successful with prior authorizations, patients’ may face financial hardship in paying for their medications and medical care. Navigating the complex medical insurance system and authorization processes requires significant time and expertise on behalf of the PH coordinator. Frequently, PAH patients will also require assistance with applying for disability, often a long and complicated process. Chronic illness can interfere with virtually every aspect of life. Finding ways to address the emotional and social changes experienced by PAH patients through networking and support groups can be life altering. One such group, the Pulmonary Hypertension Association (PHA), is a non-profit support, education, advocacy and awareness organization for patients and caregivers dealing with PAH.

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Author information

Authors and Affiliations

  1. Department of Pulmonary and Critical Care Medicine, Duke University Pulmonary Vascular Disease Center, Durham, NC, USA

    Abby Poms BS, RRT, CCRP

  2. Department of Pulmonary Medicine, Winthrop University Hospital, Mineola, NY, 11501, USA

    Mary Bartlett MSN, FNP

  3. Division of Pulmonary and Critical Care, Department of Medicine, Winthrop University Hospital, Mineola, NY, USA

    Mary Bartlett MSN, FNP

  4. Pulmonary and Critical Care Medicine, Johns Hopkins University Pulmonary Hypertension Program, Baltimore, MD, 21287, USA

    Traci Housten RN, MS

  5. Pulmonary and Critical Care, Heart and Lung Center, University of Texas Southwestern Medical Center, Dallas, TX, 75390, USA

    Martha Kingman BSN, DNP, FNP-C

  6. Division of Pulmonary and Critical Medicine, David Geffen School of Medicine at UCLA, Los Angeles, CA, 957035, USA

    Glenna L. Traiger RN, MSN, CNS-BC

Authors
  1. Abby Poms BS, RRT, CCRP
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  2. Mary Bartlett MSN, FNP
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  3. Traci Housten RN, MS
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  4. Martha Kingman BSN, DNP, FNP-C
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  5. Glenna L. Traiger RN, MSN, CNS-BC
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Corresponding author

Correspondence to Abby Poms BS, RRT, CCRP .

Editor information

Editors and Affiliations

  1. Cardiovascular Medicine Dept, Harvard Medical School Brigham and Women’s Hospital, Boston, Massachusetts, USA

    Bradley A. Maron

  2. Pulmonary & Critical Care Medicine, Stanford University Medical Center, Stanford, California, USA

    Roham T. Zamanian

  3. Pulmonary Critical Care Medicine Dept Cardiovascular Medicine Dept, Brigham and Women's Hospital Harvard Medical School, Boston, Massachusetts, USA

    Aaron B. Waxman

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Poms, A., Bartlett, M., Housten, T., Kingman, M., Traiger, G.L. (2016). Support Care for the Pulmonary Hypertension Patient. In: Maron, B., Zamanian, R., Waxman, A. (eds) Pulmonary Hypertension. Springer, Cham. https://doi.org/10.1007/978-3-319-23594-3_21

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  • DOI: https://doi.org/10.1007/978-3-319-23594-3_21

  • Publisher Name: Springer, Cham

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  • Online ISBN: 978-3-319-23594-3

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