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Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online
OBJECTIVE: People with early-onset colorectal cancer (EOCRC), defined as colorectal cancer (CRC) before the age of 50, now constitute a significant patient population. In empirical and grey literature EOCRC patients report unsatisfactory experiences of care, especially in relation to protracted inte...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BMJ Publishing Group
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10040059/ https://www.ncbi.nlm.nih.gov/pubmed/36948549 http://dx.doi.org/10.1136/bmjopen-2022-068073 |
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author | Lamprell, Klay Fajardo-Pulido, Diana Arnolda, Gaston Owais, Syeda Somyyah Nic Giolla Easpaig, Bróna Tran, Yvonne Liauw, Winston Braithwaite, Jeffrey |
author_facet | Lamprell, Klay Fajardo-Pulido, Diana Arnolda, Gaston Owais, Syeda Somyyah Nic Giolla Easpaig, Bróna Tran, Yvonne Liauw, Winston Braithwaite, Jeffrey |
author_sort | Lamprell, Klay |
collection | PubMed |
description | OBJECTIVE: People with early-onset colorectal cancer (EOCRC), defined as colorectal cancer (CRC) before the age of 50, now constitute a significant patient population. In empirical and grey literature EOCRC patients report unsatisfactory experiences of care, especially in relation to protracted intervals from first help-seeking to diagnosis. This study is the first to investigate EOCRC patients’ perspectives on ways to improve experiences of care. The objective is to provide foundational knowledge for the development of EOCRC-specific patient-reported experience measures (PREMs). DESIGN: The study was designed as qualitative Internet Mediated Research, involving a thematic analysis of unsolicited narratives recounting personal experiences of EOCRC care. We examined advice-giving statements in 120 online texts written by EOCRC patients and survivors. SETTING: The Internet is the broad research setting. The host websites of three prominent charitable CRC support organisations were selected as specific research sites: Bowel Cancer Australia, Bowel Cancer UK and Bowel Cancer New Zealand. RESULTS: We found that 90% of texts comprised statements of advice to new patients about the importance of self-advocacy in achieving quality care. Four key contexts for self-advocacy were identified: (1) accessing relevant diagnostic services; (2) driving diagnostic investigations when symptoms are not resolved; (3) involvement in treatment decision-making and (4) proactivity about preferred outcomes. Over 30% of advice-giving texts also directed statements of advice to healthcare providers, indicating that their youthfulness had been a barrier to timely diagnosis. CONCLUSION: Healthcare barriers to, and facilitators of, patient self-advocacy may be indicators of quality EORC care. There is a need for greater awareness of the impact of age bias on the responsiveness of clinicians and healthcare services in EOCRC care. Our findings support the development of EOCRC-specific PREMs that can guide age-appropriate policy and practice for this newly identified patient population. |
format | Online Article Text |
id | pubmed-10040059 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
spelling | pubmed-100400592023-03-27 Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online Lamprell, Klay Fajardo-Pulido, Diana Arnolda, Gaston Owais, Syeda Somyyah Nic Giolla Easpaig, Bróna Tran, Yvonne Liauw, Winston Braithwaite, Jeffrey BMJ Open General practice / Family practice OBJECTIVE: People with early-onset colorectal cancer (EOCRC), defined as colorectal cancer (CRC) before the age of 50, now constitute a significant patient population. In empirical and grey literature EOCRC patients report unsatisfactory experiences of care, especially in relation to protracted intervals from first help-seeking to diagnosis. This study is the first to investigate EOCRC patients’ perspectives on ways to improve experiences of care. The objective is to provide foundational knowledge for the development of EOCRC-specific patient-reported experience measures (PREMs). DESIGN: The study was designed as qualitative Internet Mediated Research, involving a thematic analysis of unsolicited narratives recounting personal experiences of EOCRC care. We examined advice-giving statements in 120 online texts written by EOCRC patients and survivors. SETTING: The Internet is the broad research setting. The host websites of three prominent charitable CRC support organisations were selected as specific research sites: Bowel Cancer Australia, Bowel Cancer UK and Bowel Cancer New Zealand. RESULTS: We found that 90% of texts comprised statements of advice to new patients about the importance of self-advocacy in achieving quality care. Four key contexts for self-advocacy were identified: (1) accessing relevant diagnostic services; (2) driving diagnostic investigations when symptoms are not resolved; (3) involvement in treatment decision-making and (4) proactivity about preferred outcomes. Over 30% of advice-giving texts also directed statements of advice to healthcare providers, indicating that their youthfulness had been a barrier to timely diagnosis. CONCLUSION: Healthcare barriers to, and facilitators of, patient self-advocacy may be indicators of quality EORC care. There is a need for greater awareness of the impact of age bias on the responsiveness of clinicians and healthcare services in EOCRC care. Our findings support the development of EOCRC-specific PREMs that can guide age-appropriate policy and practice for this newly identified patient population. BMJ Publishing Group 2023-03-21 /pmc/articles/PMC10040059/ /pubmed/36948549 http://dx.doi.org/10.1136/bmjopen-2022-068073 Text en © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) . |
spellingShingle | General practice / Family practice Lamprell, Klay Fajardo-Pulido, Diana Arnolda, Gaston Owais, Syeda Somyyah Nic Giolla Easpaig, Bróna Tran, Yvonne Liauw, Winston Braithwaite, Jeffrey Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online |
title | Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online |
title_full | Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online |
title_fullStr | Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online |
title_full_unstemmed | Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online |
title_short | Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online |
title_sort | things i need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online |
topic | General practice / Family practice |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10040059/ https://www.ncbi.nlm.nih.gov/pubmed/36948549 http://dx.doi.org/10.1136/bmjopen-2022-068073 |
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