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Communicating incidental and reportable findings from research MRIs: considering factors beyond the findings in an underrepresented pediatric population
BACKGROUND: The application of advanced imaging in pediatric research trials introduces the challenge of how to effectively handle and communicate incidental and reportable findings. This challenge is amplified in underserved populations that experience disparities in access to healthcare as recomme...
Autores principales: | , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8647358/ https://www.ncbi.nlm.nih.gov/pubmed/34865631 http://dx.doi.org/10.1186/s12874-021-01459-8 |
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author | Vander Wyst, Kiley B. Olson, Micah L. Bailey, Smita S. Valencia, Ana Martinez Peña, Armando Miller, Jeffrey Shub, Mitchell Seabrooke, Lee Pimentel, Janiel Olsen, Kiri Rosenberg, Robert B. Shaibi, Gabriel Q. |
author_facet | Vander Wyst, Kiley B. Olson, Micah L. Bailey, Smita S. Valencia, Ana Martinez Peña, Armando Miller, Jeffrey Shub, Mitchell Seabrooke, Lee Pimentel, Janiel Olsen, Kiri Rosenberg, Robert B. Shaibi, Gabriel Q. |
author_sort | Vander Wyst, Kiley B. |
collection | PubMed |
description | BACKGROUND: The application of advanced imaging in pediatric research trials introduces the challenge of how to effectively handle and communicate incidental and reportable findings. This challenge is amplified in underserved populations that experience disparities in access to healthcare as recommendations for follow-up care may be difficult to coordinate. Therefore, the purpose of the present report is to describe the process for identifying and communicating findings from a research MRI to low-income Latino children and families. METHODS: Latino adolescents (n = 86) aged 12–16 years old with obesity and prediabetes underwent a research MRI (3 Tesla Philips Ingenia®) as part of a randomized controlled diabetes prevention trial. The research MRIs were performed at baseline and 6 months to assess changes in whole-abdominal fat distribution and organ fat in response to the intervention. An institutional pathway was developed for identifying and reporting findings to participants and families. The pathway was developed through a collaborative process with hospital administration, research compliance, radiology, and the research team. All research images were reviewed by a board-certified pediatric radiologist who conveyed findings to the study pediatrician for determination of clinical actionability and reportability to children and families. Pediatric sub-specialists were consulted as necessary and a primary care practitioner (PCP) from a free community health clinic agreed to receive referrals for uninsured participants. RESULTS: A total of 139 images (86 pre- and 53 post-intervention) were reviewed with 31 findings identified and 23 deemed clinically actionable and reportable. The only reportable finding was severely elevated liver fat (> 10%, n = 14) with the most common and concerning incidental findings being horseshoe kidney (n = 1) and lung lesion (n = 1). The remainder (n = 7) were less serious. Of youth with a reportable or incidental finding, 18 had a PCP but only 7 scheduled a follow-up appointment. Seven participants without a PCP were referred to a safety-net clinic for follow-up. CONCLUSIONS: With the increased utilization of high-resolution imaging in pediatric research, additional standardization is needed on what, when, and how to return incidental and reportable findings to participants, particularly among historically underrepresented populations that may be underserved in the community. TRIAL REGISTRATION: Preventing Diabetes in Latino Youth, NCT02615353 |
format | Online Article Text |
id | pubmed-8647358 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-86473582021-12-06 Communicating incidental and reportable findings from research MRIs: considering factors beyond the findings in an underrepresented pediatric population Vander Wyst, Kiley B. Olson, Micah L. Bailey, Smita S. Valencia, Ana Martinez Peña, Armando Miller, Jeffrey Shub, Mitchell Seabrooke, Lee Pimentel, Janiel Olsen, Kiri Rosenberg, Robert B. Shaibi, Gabriel Q. BMC Med Res Methodol Research BACKGROUND: The application of advanced imaging in pediatric research trials introduces the challenge of how to effectively handle and communicate incidental and reportable findings. This challenge is amplified in underserved populations that experience disparities in access to healthcare as recommendations for follow-up care may be difficult to coordinate. Therefore, the purpose of the present report is to describe the process for identifying and communicating findings from a research MRI to low-income Latino children and families. METHODS: Latino adolescents (n = 86) aged 12–16 years old with obesity and prediabetes underwent a research MRI (3 Tesla Philips Ingenia®) as part of a randomized controlled diabetes prevention trial. The research MRIs were performed at baseline and 6 months to assess changes in whole-abdominal fat distribution and organ fat in response to the intervention. An institutional pathway was developed for identifying and reporting findings to participants and families. The pathway was developed through a collaborative process with hospital administration, research compliance, radiology, and the research team. All research images were reviewed by a board-certified pediatric radiologist who conveyed findings to the study pediatrician for determination of clinical actionability and reportability to children and families. Pediatric sub-specialists were consulted as necessary and a primary care practitioner (PCP) from a free community health clinic agreed to receive referrals for uninsured participants. RESULTS: A total of 139 images (86 pre- and 53 post-intervention) were reviewed with 31 findings identified and 23 deemed clinically actionable and reportable. The only reportable finding was severely elevated liver fat (> 10%, n = 14) with the most common and concerning incidental findings being horseshoe kidney (n = 1) and lung lesion (n = 1). The remainder (n = 7) were less serious. Of youth with a reportable or incidental finding, 18 had a PCP but only 7 scheduled a follow-up appointment. Seven participants without a PCP were referred to a safety-net clinic for follow-up. CONCLUSIONS: With the increased utilization of high-resolution imaging in pediatric research, additional standardization is needed on what, when, and how to return incidental and reportable findings to participants, particularly among historically underrepresented populations that may be underserved in the community. TRIAL REGISTRATION: Preventing Diabetes in Latino Youth, NCT02615353 BioMed Central 2021-12-05 /pmc/articles/PMC8647358/ /pubmed/34865631 http://dx.doi.org/10.1186/s12874-021-01459-8 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits 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/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Vander Wyst, Kiley B. Olson, Micah L. Bailey, Smita S. Valencia, Ana Martinez Peña, Armando Miller, Jeffrey Shub, Mitchell Seabrooke, Lee Pimentel, Janiel Olsen, Kiri Rosenberg, Robert B. Shaibi, Gabriel Q. Communicating incidental and reportable findings from research MRIs: considering factors beyond the findings in an underrepresented pediatric population |
title | Communicating incidental and reportable findings from research MRIs: considering factors beyond the findings in an underrepresented pediatric population |
title_full | Communicating incidental and reportable findings from research MRIs: considering factors beyond the findings in an underrepresented pediatric population |
title_fullStr | Communicating incidental and reportable findings from research MRIs: considering factors beyond the findings in an underrepresented pediatric population |
title_full_unstemmed | Communicating incidental and reportable findings from research MRIs: considering factors beyond the findings in an underrepresented pediatric population |
title_short | Communicating incidental and reportable findings from research MRIs: considering factors beyond the findings in an underrepresented pediatric population |
title_sort | communicating incidental and reportable findings from research mris: considering factors beyond the findings in an underrepresented pediatric population |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8647358/ https://www.ncbi.nlm.nih.gov/pubmed/34865631 http://dx.doi.org/10.1186/s12874-021-01459-8 |
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