IGNITE network

Response of patients to genomic medicine interventions

Lori A. Orlando, Corrine Voils, Carol R. Horowitz, Rachel A. Myers, Meghan J. Arwood, Emily J. Cicali, Caitrin W. McDonough, Toni I. Pollin, Yue Guan, Kenneth Levy, Andrea Ramirez, Alexandra Quittner, Ebony B. Madden

Research output: Contribution to journalArticle

Abstract

Background: The IGNITE network funds six genomic medicine projects. Though interventions varied, we hypothesized that synergies across projects could be leveraged to better understand the participant experiences with genomic medicine interventions. Therefore, we performed cross-network analyses to identify associations between participant demographics and attitudes toward the intervention (attitude), plan to share results (share), and quality of life (QOL). Methods: Data collection for demographics, attitude, share, and QOL surveys were standardized across projects. Recruitment and survey administration varied by each project's protocol. Results: Participants (N = 6,817) were 67.2% (N = 4,584) female, and 37.4% (N = 3,544) were minority. Mean age = 54.0 (sd 14.a). Younger participants were as follows: (1) more positive in attitude pre-intervention (1.15-fold decrease/10-year age increase (OR)) and more negative after (1.14-fold increase OR); (2) higher in QOL pre-intervention (1.07-fold increase OR) and postintervention; (3) more likely to share results (1.12-fold increase OR). Race was significant when sharing results (white participants increased OR = 1.88), but not for change in QOL pre–postintervention or attitude. Conclusion: Our findings demonstrate the feasibility of this approach and identified a few key themes which are as follows: age was consistently significant across the three outcomes, whereas race had less of an impact than expected. However, these are only associations and thus warrant further study.

Original languageEnglish (US)
Article numbere636
JournalMolecular Genetics and Genomic Medicine
Volume7
Issue number5
DOIs
StatePublished - May 1 2019

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Medicine
Quality of Life
Demography
Financial Management
Surveys and Questionnaires

Keywords

  • attitude
  • common measures
  • genomic medicine
  • IGNITE
  • plan to share
  • quality of life

ASJC Scopus subject areas

  • Molecular Biology
  • Genetics
  • Genetics(clinical)

Cite this

Orlando, L. A., Voils, C., Horowitz, C. R., Myers, R. A., Arwood, M. J., Cicali, E. J., ... Madden, E. B. (2019). IGNITE network: Response of patients to genomic medicine interventions. Molecular Genetics and Genomic Medicine, 7(5), [e636]. https://doi.org/10.1002/mgg3.636

IGNITE network : Response of patients to genomic medicine interventions. / Orlando, Lori A.; Voils, Corrine; Horowitz, Carol R.; Myers, Rachel A.; Arwood, Meghan J.; Cicali, Emily J.; McDonough, Caitrin W.; Pollin, Toni I.; Guan, Yue; Levy, Kenneth; Ramirez, Andrea; Quittner, Alexandra; Madden, Ebony B.

In: Molecular Genetics and Genomic Medicine, Vol. 7, No. 5, e636, 01.05.2019.

Research output: Contribution to journalArticle

Orlando, LA, Voils, C, Horowitz, CR, Myers, RA, Arwood, MJ, Cicali, EJ, McDonough, CW, Pollin, TI, Guan, Y, Levy, K, Ramirez, A, Quittner, A & Madden, EB 2019, 'IGNITE network: Response of patients to genomic medicine interventions', Molecular Genetics and Genomic Medicine, vol. 7, no. 5, e636. https://doi.org/10.1002/mgg3.636
Orlando LA, Voils C, Horowitz CR, Myers RA, Arwood MJ, Cicali EJ et al. IGNITE network: Response of patients to genomic medicine interventions. Molecular Genetics and Genomic Medicine. 2019 May 1;7(5). e636. https://doi.org/10.1002/mgg3.636
Orlando, Lori A. ; Voils, Corrine ; Horowitz, Carol R. ; Myers, Rachel A. ; Arwood, Meghan J. ; Cicali, Emily J. ; McDonough, Caitrin W. ; Pollin, Toni I. ; Guan, Yue ; Levy, Kenneth ; Ramirez, Andrea ; Quittner, Alexandra ; Madden, Ebony B. / IGNITE network : Response of patients to genomic medicine interventions. In: Molecular Genetics and Genomic Medicine. 2019 ; Vol. 7, No. 5.
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abstract = "Background: The IGNITE network funds six genomic medicine projects. Though interventions varied, we hypothesized that synergies across projects could be leveraged to better understand the participant experiences with genomic medicine interventions. Therefore, we performed cross-network analyses to identify associations between participant demographics and attitudes toward the intervention (attitude), plan to share results (share), and quality of life (QOL). Methods: Data collection for demographics, attitude, share, and QOL surveys were standardized across projects. Recruitment and survey administration varied by each project's protocol. Results: Participants (N = 6,817) were 67.2{\%} (N = 4,584) female, and 37.4{\%} (N = 3,544) were minority. Mean age = 54.0 (sd 14.a). Younger participants were as follows: (1) more positive in attitude pre-intervention (1.15-fold decrease/10-year age increase (OR)) and more negative after (1.14-fold increase OR); (2) higher in QOL pre-intervention (1.07-fold increase OR) and postintervention; (3) more likely to share results (1.12-fold increase OR). Race was significant when sharing results (white participants increased OR = 1.88), but not for change in QOL pre–postintervention or attitude. Conclusion: Our findings demonstrate the feasibility of this approach and identified a few key themes which are as follows: age was consistently significant across the three outcomes, whereas race had less of an impact than expected. However, these are only associations and thus warrant further study.",
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AU - Orlando, Lori A.

AU - Voils, Corrine

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AU - Myers, Rachel A.

AU - Arwood, Meghan J.

AU - Cicali, Emily J.

AU - McDonough, Caitrin W.

AU - Pollin, Toni I.

AU - Guan, Yue

AU - Levy, Kenneth

AU - Ramirez, Andrea

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AU - Madden, Ebony B.

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