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The Role of UK Oncogene-Focussed Patient Groups in Supporting and Educating Patients with Oncogene-Driven NSCLC: Results from a Patient-Devised Survey

To meet the needs of patients with non-small cell lung cancer (NSCLC) with an oncogene-driver, patients have organised into support groups. These groups are building partnerships to provide support and education and to help patients access treatment through sharing information and promoting advocacy...

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Autores principales: Abbott, Jenny, Beattie, Kathleen, Montague, Debra
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8140168/
https://www.ncbi.nlm.nih.gov/pubmed/33677715
http://dx.doi.org/10.1007/s40487-021-00145-5
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author Abbott, Jenny
Beattie, Kathleen
Montague, Debra
author_facet Abbott, Jenny
Beattie, Kathleen
Montague, Debra
author_sort Abbott, Jenny
collection PubMed
description To meet the needs of patients with non-small cell lung cancer (NSCLC) with an oncogene-driver, patients have organised into support groups. These groups are building partnerships to provide support and education and to help patients access treatment through sharing information and promoting advocacy. Here, we report findings from a fully anonymised survey conducted in 2020 across the membership of three Facebook-based patient groups in the UK (EGFR Positive UK, ALK Positive UK and ROS-1 Support Group, n = 465). Of 167 respondents, most were women (73.1%), never-smokers (60.5%) and diagnosed with stage IV disease (86.3%). Benefits included feeling better prepared (79.6%), being inspired by other members’ experiences (71.3%) and being helped with feelings of isolation (49.0%); notably only 27.5% struggled when members died or with feelings of increased anxiety (3%). These findings from a representative population of oncogene-driven NSCLC patients provide new information on the experience of living with lung cancer and highlight the value of specialised support. These patient support groups represent powerful resources to enable enhanced public and patient engagement and meaningful alliances with key stakeholders to help deliver improvement in outcomes for patients.
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spelling pubmed-81401682021-06-07 The Role of UK Oncogene-Focussed Patient Groups in Supporting and Educating Patients with Oncogene-Driven NSCLC: Results from a Patient-Devised Survey Abbott, Jenny Beattie, Kathleen Montague, Debra Oncol Ther Original Research To meet the needs of patients with non-small cell lung cancer (NSCLC) with an oncogene-driver, patients have organised into support groups. These groups are building partnerships to provide support and education and to help patients access treatment through sharing information and promoting advocacy. Here, we report findings from a fully anonymised survey conducted in 2020 across the membership of three Facebook-based patient groups in the UK (EGFR Positive UK, ALK Positive UK and ROS-1 Support Group, n = 465). Of 167 respondents, most were women (73.1%), never-smokers (60.5%) and diagnosed with stage IV disease (86.3%). Benefits included feeling better prepared (79.6%), being inspired by other members’ experiences (71.3%) and being helped with feelings of isolation (49.0%); notably only 27.5% struggled when members died or with feelings of increased anxiety (3%). These findings from a representative population of oncogene-driven NSCLC patients provide new information on the experience of living with lung cancer and highlight the value of specialised support. These patient support groups represent powerful resources to enable enhanced public and patient engagement and meaningful alliances with key stakeholders to help deliver improvement in outcomes for patients. Springer Healthcare 2021-03-07 /pmc/articles/PMC8140168/ /pubmed/33677715 http://dx.doi.org/10.1007/s40487-021-00145-5 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by-nc/4.0/Open Access This article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Original Research
Abbott, Jenny
Beattie, Kathleen
Montague, Debra
The Role of UK Oncogene-Focussed Patient Groups in Supporting and Educating Patients with Oncogene-Driven NSCLC: Results from a Patient-Devised Survey
title The Role of UK Oncogene-Focussed Patient Groups in Supporting and Educating Patients with Oncogene-Driven NSCLC: Results from a Patient-Devised Survey
title_full The Role of UK Oncogene-Focussed Patient Groups in Supporting and Educating Patients with Oncogene-Driven NSCLC: Results from a Patient-Devised Survey
title_fullStr The Role of UK Oncogene-Focussed Patient Groups in Supporting and Educating Patients with Oncogene-Driven NSCLC: Results from a Patient-Devised Survey
title_full_unstemmed The Role of UK Oncogene-Focussed Patient Groups in Supporting and Educating Patients with Oncogene-Driven NSCLC: Results from a Patient-Devised Survey
title_short The Role of UK Oncogene-Focussed Patient Groups in Supporting and Educating Patients with Oncogene-Driven NSCLC: Results from a Patient-Devised Survey
title_sort role of uk oncogene-focussed patient groups in supporting and educating patients with oncogene-driven nsclc: results from a patient-devised survey
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8140168/
https://www.ncbi.nlm.nih.gov/pubmed/33677715
http://dx.doi.org/10.1007/s40487-021-00145-5
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