Uptake of Genetic Research Results and Patient-Reported Outcomes With Return of Results Incorporating Web-Based Predisclosure Education
PURPOSE: We developed a web-based education intervention as an alternative to predisclosure education with a genetic counselor (GC) to reduce participant burden and provider costs with return of genetic research results.
METHODS: Women at three sites who participated in 11 gene discovery research studies were contacted to consider receiving cancer genetic research results. Participants could complete predisclosure education through web education or with a GC. Outcomes included uptake of research results, factors associated with uptake, and patient-reported outcomes.
RESULTS: Of 819 participants, 178 actively (21.7%) and 167 passively (20.4%) declined return of results; 474 (57.9%) were enrolled. Most (60.3%) received results although this was lower than the 70% uptake we hypothesized. Passive and active decliners were more likely to be Black, to have less education, and to have not received phone follow-up after the invitation letter. Most participants selected web education (88.5%) as an alternative to speaking with a GC, but some did not complete or receive results. Knowledge increased significantly from baseline to other time points with no significant differences between those who received web versus GC education. There were no significant increases in distress between web and GC education.
CONCLUSION: Interest in web-based predisclosure education for return of genetic research results was high although it did not increase uptake of results. We found no negative patient-reported outcomes with web education, suggesting that it is a viable alternative delivery model for reducing burdens and costs of returning genetic research results. Attention to attrition and lower uptake of results among Black participants and those with less formal education are important areas for future research.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2023 |
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| Erschienen: |
2023 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:41 |
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| Enthalten in: |
Journal of clinical oncology : official journal of the American Society of Clinical Oncology - 41(2023), 31 vom: 01. Nov., Seite 4905-4915 |
| Sprache: |
Englisch |
|---|
| Beteiligte Personen: |
Kilbride, Madison [VerfasserIn] |
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| Links: |
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| Themen: |
Journal Article |
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| Anmerkungen: |
Date Completed 30.10.2023 Date Revised 10.02.2024 published: Print-Electronic Citation Status MEDLINE |
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| doi: |
10.1200/JCO.22.00516 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| PPN (Katalog-ID): |
NLM361096607 |
|---|
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| 100 | 1 | |a Kilbride, Madison |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Uptake of Genetic Research Results and Patient-Reported Outcomes With Return of Results Incorporating Web-Based Predisclosure Education |
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| 500 | |a Date Completed 30.10.2023 | ||
| 500 | |a Date Revised 10.02.2024 | ||
| 500 | |a published: Print-Electronic | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a PURPOSE: We developed a web-based education intervention as an alternative to predisclosure education with a genetic counselor (GC) to reduce participant burden and provider costs with return of genetic research results | ||
| 520 | |a METHODS: Women at three sites who participated in 11 gene discovery research studies were contacted to consider receiving cancer genetic research results. Participants could complete predisclosure education through web education or with a GC. Outcomes included uptake of research results, factors associated with uptake, and patient-reported outcomes | ||
| 520 | |a RESULTS: Of 819 participants, 178 actively (21.7%) and 167 passively (20.4%) declined return of results; 474 (57.9%) were enrolled. Most (60.3%) received results although this was lower than the 70% uptake we hypothesized. Passive and active decliners were more likely to be Black, to have less education, and to have not received phone follow-up after the invitation letter. Most participants selected web education (88.5%) as an alternative to speaking with a GC, but some did not complete or receive results. Knowledge increased significantly from baseline to other time points with no significant differences between those who received web versus GC education. There were no significant increases in distress between web and GC education | ||
| 520 | |a CONCLUSION: Interest in web-based predisclosure education for return of genetic research results was high although it did not increase uptake of results. We found no negative patient-reported outcomes with web education, suggesting that it is a viable alternative delivery model for reducing burdens and costs of returning genetic research results. Attention to attrition and lower uptake of results among Black participants and those with less formal education are important areas for future research | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a Research Support, N.I.H., Extramural | |
| 650 | 4 | |a Research Support, Non-U.S. Gov't | |
| 700 | 1 | |a Egleston, Brian L |e verfasserin |4 aut | |
| 700 | 1 | |a Chung, Wendy K |e verfasserin |4 aut | |
| 700 | 1 | |a Olopade, Olufunmilayo |e verfasserin |4 aut | |
| 700 | 1 | |a Maxwell, Kara N |e verfasserin |4 aut | |
| 700 | 1 | |a Shah, Payal |e verfasserin |4 aut | |
| 700 | 1 | |a Churpek, Jane E |e verfasserin |4 aut | |
| 700 | 1 | |a Fleisher, Linda |e verfasserin |4 aut | |
| 700 | 1 | |a Terry, Mary Beth |e verfasserin |4 aut | |
| 700 | 1 | |a Fetzer, Dominique |e verfasserin |4 aut | |
| 700 | 1 | |a Gaieski, Jill Bennett |e verfasserin |4 aut | |
| 700 | 1 | |a Bulafka, Jessica |e verfasserin |4 aut | |
| 700 | 1 | |a Espinal, Aileen |e verfasserin |4 aut | |
| 700 | 1 | |a Karpink, Kelsey |e verfasserin |4 aut | |
| 700 | 1 | |a Walser, Sarah |e verfasserin |4 aut | |
| 700 | 1 | |a Singleton, Davone |e verfasserin |4 aut | |
| 700 | 1 | |a Palese, Monica |e verfasserin |4 aut | |
| 700 | 1 | |a Siljander, Ilona |e verfasserin |4 aut | |
| 700 | 1 | |a Brandt, Amanda |e verfasserin |4 aut | |
| 700 | 1 | |a Clark, Dana |e verfasserin |4 aut | |
| 700 | 1 | |a Koval, Carrie |e verfasserin |4 aut | |
| 700 | 1 | |a Wynn, Julia |e verfasserin |4 aut | |
| 700 | 1 | |a Long, Jessica M |e verfasserin |4 aut | |
| 700 | 1 | |a McKenna, Danielle |e verfasserin |4 aut | |
| 700 | 1 | |a Powers, Jacquelyn |e verfasserin |4 aut | |
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| 700 | 1 | |a Nathanson, Katherine L |e verfasserin |4 aut | |
| 700 | 1 | |a Bradbury, Angela R |e verfasserin |4 aut | |
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