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Crohn’s Disease Patient Experiences and Preferences With Disease Monitoring: An International Qualitative Study

BACKGROUND: Strategies incorporating objective disease monitoring in Crohn’s disease (CD), beyond clinical symptoms are important to improve patient outcomes. Little evidence exists to explore patient understanding of CD treatment goals, nor preferences and experiences with monitoring options. This...

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Autores principales: Rohatinsky, Noelle, Zelinsky, Sandra, Dolinger, Michael, Christensen, Britt, Wilkens, Rune, Radford, Shellie, Dubinsky, Marla, Novak, Kerri
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10022708/
https://www.ncbi.nlm.nih.gov/pubmed/36937136
http://dx.doi.org/10.1093/crocol/otad012
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author Rohatinsky, Noelle
Zelinsky, Sandra
Dolinger, Michael
Christensen, Britt
Wilkens, Rune
Radford, Shellie
Dubinsky, Marla
Novak, Kerri
author_facet Rohatinsky, Noelle
Zelinsky, Sandra
Dolinger, Michael
Christensen, Britt
Wilkens, Rune
Radford, Shellie
Dubinsky, Marla
Novak, Kerri
author_sort Rohatinsky, Noelle
collection PubMed
description BACKGROUND: Strategies incorporating objective disease monitoring in Crohn’s disease (CD), beyond clinical symptoms are important to improve patient outcomes. Little evidence exists to explore patient understanding of CD treatment goals, nor preferences and experiences with monitoring options. This qualitative study aimed to explore patient experiences and preferences of CD monitoring to inform monitoring strategies, improve patient engagement, and optimize a patient-centered approach to care. METHODS: This study used a patient-oriented, qualitative descriptive design. Convenience and snowball sampling were used to recruit adult participants diagnosed with CD who had experience with at least 2 types of disease monitoring. Online focus groups were conducted and data were analyzed using thematic analysis. RESULTS: This international study included 37 participants from Australia, Canada, United Kingdom, and the United States. Overall, participants preferred more noninvasive types of monitoring [eg, intestinal ultrasound (IUS)] but were willing to undergo more invasive monitoring (eg, colonoscopy) if required. To improve disease monitoring, participants wanted increased access to IUS, establishment of a patient-centered interdisciplinary team and access to information and self-testing. Participants identified challenges with communication between patients and providers and stressed the importance of participating in shared decision making and being equal team members in their care. CONCLUSIONS: It is imperative to incorporate patient-driven preferences into how we can best structure monitoring strategies, to ensure equitable access to those preferred modalities and embrace a shared decision-making approach to disease management in CD.
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spelling pubmed-100227082023-03-18 Crohn’s Disease Patient Experiences and Preferences With Disease Monitoring: An International Qualitative Study Rohatinsky, Noelle Zelinsky, Sandra Dolinger, Michael Christensen, Britt Wilkens, Rune Radford, Shellie Dubinsky, Marla Novak, Kerri Crohns Colitis 360 Observations and Research BACKGROUND: Strategies incorporating objective disease monitoring in Crohn’s disease (CD), beyond clinical symptoms are important to improve patient outcomes. Little evidence exists to explore patient understanding of CD treatment goals, nor preferences and experiences with monitoring options. This qualitative study aimed to explore patient experiences and preferences of CD monitoring to inform monitoring strategies, improve patient engagement, and optimize a patient-centered approach to care. METHODS: This study used a patient-oriented, qualitative descriptive design. Convenience and snowball sampling were used to recruit adult participants diagnosed with CD who had experience with at least 2 types of disease monitoring. Online focus groups were conducted and data were analyzed using thematic analysis. RESULTS: This international study included 37 participants from Australia, Canada, United Kingdom, and the United States. Overall, participants preferred more noninvasive types of monitoring [eg, intestinal ultrasound (IUS)] but were willing to undergo more invasive monitoring (eg, colonoscopy) if required. To improve disease monitoring, participants wanted increased access to IUS, establishment of a patient-centered interdisciplinary team and access to information and self-testing. Participants identified challenges with communication between patients and providers and stressed the importance of participating in shared decision making and being equal team members in their care. CONCLUSIONS: It is imperative to incorporate patient-driven preferences into how we can best structure monitoring strategies, to ensure equitable access to those preferred modalities and embrace a shared decision-making approach to disease management in CD. Oxford University Press 2023-02-25 /pmc/articles/PMC10022708/ /pubmed/36937136 http://dx.doi.org/10.1093/crocol/otad012 Text en © The Author(s) 2023. Published by Oxford University Press on behalf of Crohn's & Colitis Foundation. https://creativecommons.org/licenses/by-nc/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution-Non-Commercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Observations and Research
Rohatinsky, Noelle
Zelinsky, Sandra
Dolinger, Michael
Christensen, Britt
Wilkens, Rune
Radford, Shellie
Dubinsky, Marla
Novak, Kerri
Crohn’s Disease Patient Experiences and Preferences With Disease Monitoring: An International Qualitative Study
title Crohn’s Disease Patient Experiences and Preferences With Disease Monitoring: An International Qualitative Study
title_full Crohn’s Disease Patient Experiences and Preferences With Disease Monitoring: An International Qualitative Study
title_fullStr Crohn’s Disease Patient Experiences and Preferences With Disease Monitoring: An International Qualitative Study
title_full_unstemmed Crohn’s Disease Patient Experiences and Preferences With Disease Monitoring: An International Qualitative Study
title_short Crohn’s Disease Patient Experiences and Preferences With Disease Monitoring: An International Qualitative Study
title_sort crohn’s disease patient experiences and preferences with disease monitoring: an international qualitative study
topic Observations and Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10022708/
https://www.ncbi.nlm.nih.gov/pubmed/36937136
http://dx.doi.org/10.1093/crocol/otad012
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