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An expert panel Delphi consensus statement on the use of palliative care in the management of patients with pulmonary arterial hypertension

Mortality in pulmonary arterial hypertension (PAH) remains high and referral to palliative or supportive care (P/SC) specialist services is recommended when appropriate. However, access to P/SC is frequently a challenge for patients with a noncancer diagnosis and few patients living with PAH report...

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Autores principales: Wilson, Melisa, Anguiano, Rebekah H., Awdish, Rana L. A., Coons, James C., Kimber, Amy, Morrison, Melissa, Paulus, Sara, Schmit, Ann, Spexarth, Frank, Swetz, Keith M., Verlinden, Nathan J., Whittenhall, Mary E., Sketch, Margaret R., Broderick, Meredith, Brewer, Jacqueline
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9052975/
https://www.ncbi.nlm.nih.gov/pubmed/35506067
http://dx.doi.org/10.1002/pul2.12003
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author Wilson, Melisa
Anguiano, Rebekah H.
Awdish, Rana L. A.
Coons, James C.
Kimber, Amy
Morrison, Melissa
Paulus, Sara
Schmit, Ann
Spexarth, Frank
Swetz, Keith M.
Verlinden, Nathan J.
Whittenhall, Mary E.
Sketch, Margaret R.
Broderick, Meredith
Brewer, Jacqueline
author_facet Wilson, Melisa
Anguiano, Rebekah H.
Awdish, Rana L. A.
Coons, James C.
Kimber, Amy
Morrison, Melissa
Paulus, Sara
Schmit, Ann
Spexarth, Frank
Swetz, Keith M.
Verlinden, Nathan J.
Whittenhall, Mary E.
Sketch, Margaret R.
Broderick, Meredith
Brewer, Jacqueline
author_sort Wilson, Melisa
collection PubMed
description Mortality in pulmonary arterial hypertension (PAH) remains high and referral to palliative or supportive care (P/SC) specialist services is recommended when appropriate. However, access to P/SC is frequently a challenge for patients with a noncancer diagnosis and few patients living with PAH report P/SC involvement in their care. A modified Delphi process of three questionnaires completed by a multidisciplinary panel (N = 15) was used to develop expert consensus statements regarding the use of P/SC to support patients with PAH. Panelists rated their agreement with each statement on a Likert scale. There was a strong consensus that patients should be referred to P/SC when disease symptoms become unmanageable or for end‐of‐life care. Services that achieved consensus were pain management techniques, end‐of‐life care, and psychosocial recommendations. Palliative or supportive care should be discussed with patients, preferably in‐person, when disease symptoms become unmanageable, when starting treatment, when treatment‐related adverse events occur or become refractory to initial intervention. Care partners and patient support groups were considered important in improving a patient's overall health outcomes, treatment adherence, and perception of care. Most patients with PAH experience cognitive and/or psychosocial changes and those who receive psychosocial management have better persistence and/or compliance with their treatment. These consensus statements provide guidance to healthcare providers on the “who and when” of referral to palliative care services, as well as the importance of focusing on the psychosocial aspects of patient care and quality of life.
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spelling pubmed-90529752022-05-02 An expert panel Delphi consensus statement on the use of palliative care in the management of patients with pulmonary arterial hypertension Wilson, Melisa Anguiano, Rebekah H. Awdish, Rana L. A. Coons, James C. Kimber, Amy Morrison, Melissa Paulus, Sara Schmit, Ann Spexarth, Frank Swetz, Keith M. Verlinden, Nathan J. Whittenhall, Mary E. Sketch, Margaret R. Broderick, Meredith Brewer, Jacqueline Pulm Circ Research Articles Mortality in pulmonary arterial hypertension (PAH) remains high and referral to palliative or supportive care (P/SC) specialist services is recommended when appropriate. However, access to P/SC is frequently a challenge for patients with a noncancer diagnosis and few patients living with PAH report P/SC involvement in their care. A modified Delphi process of three questionnaires completed by a multidisciplinary panel (N = 15) was used to develop expert consensus statements regarding the use of P/SC to support patients with PAH. Panelists rated their agreement with each statement on a Likert scale. There was a strong consensus that patients should be referred to P/SC when disease symptoms become unmanageable or for end‐of‐life care. Services that achieved consensus were pain management techniques, end‐of‐life care, and psychosocial recommendations. Palliative or supportive care should be discussed with patients, preferably in‐person, when disease symptoms become unmanageable, when starting treatment, when treatment‐related adverse events occur or become refractory to initial intervention. Care partners and patient support groups were considered important in improving a patient's overall health outcomes, treatment adherence, and perception of care. Most patients with PAH experience cognitive and/or psychosocial changes and those who receive psychosocial management have better persistence and/or compliance with their treatment. These consensus statements provide guidance to healthcare providers on the “who and when” of referral to palliative care services, as well as the importance of focusing on the psychosocial aspects of patient care and quality of life. John Wiley and Sons Inc. 2022-01-05 /pmc/articles/PMC9052975/ /pubmed/35506067 http://dx.doi.org/10.1002/pul2.12003 Text en © 2021 United Therapeutics PBC. Pulmonary Circulation published by John Wiley & Sons Ltd on behalf of Pulmonary Vascular Research Institute https://creativecommons.org/licenses/by-nc/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle Research Articles
Wilson, Melisa
Anguiano, Rebekah H.
Awdish, Rana L. A.
Coons, James C.
Kimber, Amy
Morrison, Melissa
Paulus, Sara
Schmit, Ann
Spexarth, Frank
Swetz, Keith M.
Verlinden, Nathan J.
Whittenhall, Mary E.
Sketch, Margaret R.
Broderick, Meredith
Brewer, Jacqueline
An expert panel Delphi consensus statement on the use of palliative care in the management of patients with pulmonary arterial hypertension
title An expert panel Delphi consensus statement on the use of palliative care in the management of patients with pulmonary arterial hypertension
title_full An expert panel Delphi consensus statement on the use of palliative care in the management of patients with pulmonary arterial hypertension
title_fullStr An expert panel Delphi consensus statement on the use of palliative care in the management of patients with pulmonary arterial hypertension
title_full_unstemmed An expert panel Delphi consensus statement on the use of palliative care in the management of patients with pulmonary arterial hypertension
title_short An expert panel Delphi consensus statement on the use of palliative care in the management of patients with pulmonary arterial hypertension
title_sort expert panel delphi consensus statement on the use of palliative care in the management of patients with pulmonary arterial hypertension
topic Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9052975/
https://www.ncbi.nlm.nih.gov/pubmed/35506067
http://dx.doi.org/10.1002/pul2.12003
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