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Learning Needs of Patients with Cancer and a Pre-Existing Autoimmune Disease Who Are Candidates to Receive Immune Checkpoint Inhibitors

SIMPLE SUMMARY: Our results can be used in clinical settings to facilitate patient–provider discussion. They can also be used to develop educational interventions to increase knowledge and decrease uncertainty. We identified seven key informational needs: (1) possible adverse events; (2) benefits of...

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Autores principales: Lopez-Olivo, Maria A., Kachira, Johncy J., Buni, Maryam, Kim, Sang Taek, Lu, Huifang, Tayar, Jean H., Duhon, Gabrielle F., Ruiz, Juan I., Bingham, Clifton O., Calabrese, Cassandra, Volk, Robert J., Suarez-Almazor, Maria E.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10416973/
https://www.ncbi.nlm.nih.gov/pubmed/37568819
http://dx.doi.org/10.3390/cancers15154004
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author Lopez-Olivo, Maria A.
Kachira, Johncy J.
Buni, Maryam
Kim, Sang Taek
Lu, Huifang
Tayar, Jean H.
Duhon, Gabrielle F.
Ruiz, Juan I.
Bingham, Clifton O.
Calabrese, Cassandra
Volk, Robert J.
Suarez-Almazor, Maria E.
author_facet Lopez-Olivo, Maria A.
Kachira, Johncy J.
Buni, Maryam
Kim, Sang Taek
Lu, Huifang
Tayar, Jean H.
Duhon, Gabrielle F.
Ruiz, Juan I.
Bingham, Clifton O.
Calabrese, Cassandra
Volk, Robert J.
Suarez-Almazor, Maria E.
author_sort Lopez-Olivo, Maria A.
collection PubMed
description SIMPLE SUMMARY: Our results can be used in clinical settings to facilitate patient–provider discussion. They can also be used to develop educational interventions to increase knowledge and decrease uncertainty. We identified seven key informational needs: (1) possible adverse events; (2) benefits of ICI; (3) ICI mechanism of action in the context of autoimmune disease; (4) management of flare-ups while receiving ICI; (5) reasons for stopping or modifying cancer or autoimmune disease treatment; (6) likelihood of autoimmune disease progression or organ damage; and (7) lifestyle changes that could help avoid adverse events. ABSTRACT: Patients with pre-existing autoimmune disorders and cancer considering immune checkpoint inhibitors (ICIs) need to receive balanced information about the benefits and risk of developing immune-related adverse events (irAEs) and flare-ups of their autoimmune disease. To assess the learning needs of patients with cancer and pre-existing autoimmune disease regarding ICI treatment, we interviewed 29 patients with autoimmune disease and cancer from a comprehensive cancer center, of whom 20 had received ICI and 9 were candidates to receive ICI at a US Cancer Center. In-depth semi-structured interviews were conducted from August 2021 and January 2022. Interviewee’s opinions and preferences about content and information delivery methods were collected. We recorded and transcribed interviews and analyzed them using thematic analysis. Half of the participants were female, and their median (SD) age was 62.9 (±10.9) years. The identified health information needs included the following: (1) information on irAEs and autoimmune disease flare-ups; (2) benefits of ICI; (3) ICI mechanism in the context of autoimmune disease; (4) management of flare-ups; (5) reasons for stopping or modifying cancer or autoimmune disease treatment; (6) likelihood of autoimmune disease progression or organ damage; and (7) lifestyle changes that could help avoid irAEs. Patients who had received ICI and those who had not yet received treatment reported similar needs, although patients who had received ICI had more questions about cancer treatment modifications. Patients also expressed the need to better understand when to contact their provider and how to share information with multiple providers. Most patients wanted to receive information in visual formats for review at home and at their own pace. Patients expressed interest in having educational tools to facilitate shared decision-making with their physicians, and they identified several areas of health information concerning therapy with ICI. They also highlighted the importance of communication among their various providers.
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spelling pubmed-104169732023-08-12 Learning Needs of Patients with Cancer and a Pre-Existing Autoimmune Disease Who Are Candidates to Receive Immune Checkpoint Inhibitors Lopez-Olivo, Maria A. Kachira, Johncy J. Buni, Maryam Kim, Sang Taek Lu, Huifang Tayar, Jean H. Duhon, Gabrielle F. Ruiz, Juan I. Bingham, Clifton O. Calabrese, Cassandra Volk, Robert J. Suarez-Almazor, Maria E. Cancers (Basel) Article SIMPLE SUMMARY: Our results can be used in clinical settings to facilitate patient–provider discussion. They can also be used to develop educational interventions to increase knowledge and decrease uncertainty. We identified seven key informational needs: (1) possible adverse events; (2) benefits of ICI; (3) ICI mechanism of action in the context of autoimmune disease; (4) management of flare-ups while receiving ICI; (5) reasons for stopping or modifying cancer or autoimmune disease treatment; (6) likelihood of autoimmune disease progression or organ damage; and (7) lifestyle changes that could help avoid adverse events. ABSTRACT: Patients with pre-existing autoimmune disorders and cancer considering immune checkpoint inhibitors (ICIs) need to receive balanced information about the benefits and risk of developing immune-related adverse events (irAEs) and flare-ups of their autoimmune disease. To assess the learning needs of patients with cancer and pre-existing autoimmune disease regarding ICI treatment, we interviewed 29 patients with autoimmune disease and cancer from a comprehensive cancer center, of whom 20 had received ICI and 9 were candidates to receive ICI at a US Cancer Center. In-depth semi-structured interviews were conducted from August 2021 and January 2022. Interviewee’s opinions and preferences about content and information delivery methods were collected. We recorded and transcribed interviews and analyzed them using thematic analysis. Half of the participants were female, and their median (SD) age was 62.9 (±10.9) years. The identified health information needs included the following: (1) information on irAEs and autoimmune disease flare-ups; (2) benefits of ICI; (3) ICI mechanism in the context of autoimmune disease; (4) management of flare-ups; (5) reasons for stopping or modifying cancer or autoimmune disease treatment; (6) likelihood of autoimmune disease progression or organ damage; and (7) lifestyle changes that could help avoid irAEs. Patients who had received ICI and those who had not yet received treatment reported similar needs, although patients who had received ICI had more questions about cancer treatment modifications. Patients also expressed the need to better understand when to contact their provider and how to share information with multiple providers. Most patients wanted to receive information in visual formats for review at home and at their own pace. Patients expressed interest in having educational tools to facilitate shared decision-making with their physicians, and they identified several areas of health information concerning therapy with ICI. They also highlighted the importance of communication among their various providers. MDPI 2023-08-07 /pmc/articles/PMC10416973/ /pubmed/37568819 http://dx.doi.org/10.3390/cancers15154004 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Lopez-Olivo, Maria A.
Kachira, Johncy J.
Buni, Maryam
Kim, Sang Taek
Lu, Huifang
Tayar, Jean H.
Duhon, Gabrielle F.
Ruiz, Juan I.
Bingham, Clifton O.
Calabrese, Cassandra
Volk, Robert J.
Suarez-Almazor, Maria E.
Learning Needs of Patients with Cancer and a Pre-Existing Autoimmune Disease Who Are Candidates to Receive Immune Checkpoint Inhibitors
title Learning Needs of Patients with Cancer and a Pre-Existing Autoimmune Disease Who Are Candidates to Receive Immune Checkpoint Inhibitors
title_full Learning Needs of Patients with Cancer and a Pre-Existing Autoimmune Disease Who Are Candidates to Receive Immune Checkpoint Inhibitors
title_fullStr Learning Needs of Patients with Cancer and a Pre-Existing Autoimmune Disease Who Are Candidates to Receive Immune Checkpoint Inhibitors
title_full_unstemmed Learning Needs of Patients with Cancer and a Pre-Existing Autoimmune Disease Who Are Candidates to Receive Immune Checkpoint Inhibitors
title_short Learning Needs of Patients with Cancer and a Pre-Existing Autoimmune Disease Who Are Candidates to Receive Immune Checkpoint Inhibitors
title_sort learning needs of patients with cancer and a pre-existing autoimmune disease who are candidates to receive immune checkpoint inhibitors
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10416973/
https://www.ncbi.nlm.nih.gov/pubmed/37568819
http://dx.doi.org/10.3390/cancers15154004
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