Consumer perceptions of interactions with primary care providers after direct-to-consumer personal genomic testing

Cathelijne H. Van Der Wouden, Deanna Alexis Carere, Anke H. Maitland-Van Der Zee, Mac K T Ruffin, J. Scott Roberts, Robert C. Green, Joel B. Krier, Margaret H. Helm, Lisa S. Lehmann, Peter Kraft, Lan Q. Le, Jenny Ostergren, Wendy R. Uhlmann, Mick P. Couper, Joanna L. Mountain, Amy K. Kiefer, Glenn D. Braunstein, Scott D. Crawford, L. Adrienne Cupples, Clara A. ChenCatharine Wang, Stacy W. Gray, Barbara A. Koenig, Kimberly Kaphingst, Sarah Gollust

Research output: Contribution to journalArticle

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Abstract

Background: Direct-to-consumer (DTC) personal genomic testing (PGT) allows individuals to learn about their genetic makeup without going through a physician, but some consumers share their results with their primary care provider (PCP). Objective: To describe the characteristics and perceptions of DTC PGT consumers who discuss their results with their PCP. Design: Longitudinal, prospective cohort study. Setting: Online survey before and 6 months after results. Participants: DTC PGT consumers. Measurements: Consumer satisfaction with the DTC PGT experience; whether and, if so, how many results could be used to improve health; how many results were not understood; and beliefs about the PCP's understanding of genetics. Participants were asked with whom they had discussed their results. Genetic reports were linked to survey responses. Results: Among 1026 respondents, 63% planned to share their results with a PCP. At 6-month follow-up, 27% reported having done so, and 8% reported sharing with another health care provider only. Common reasons for not sharing results with a health care provider were that the results were not important enough (40%) or that the participant did not have time to do so (37%). Among participants who discussed results with their PCP, 35% were very satisfied with the encounter, and 18% were not at all satisfied. Frequently identified themes in participant descriptions of these encounters were actionability of the results or use in care (32%), PCP engagement or interest (25%), and lack of PCP engagement or interest (22%). Limitation: Participants may not be representative of all DTC PGT consumers. Conclusion: A comprehensive picture of DTC PGT consumers who shared their results with a health care provider is presented. The proportion that shares results is expected to increase with time after testing as consumers find opportunities for discussion at later appointments or if results become relevant as medical needs evolve.

Original languageEnglish (US)
Pages (from-to)513-522
Number of pages10
JournalAnnals of internal medicine
Volume164
Issue number8
DOIs
StatePublished - Apr 19 2016

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Primary Health Care
Health Personnel
Appointments and Schedules
Cohort Studies
Prospective Studies
Physicians
Health
Surveys and Questionnaires

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Van Der Wouden, C. H., Carere, D. A., Maitland-Van Der Zee, A. H., Ruffin, M. K. T., Roberts, J. S., Green, R. C., ... Gollust, S. (2016). Consumer perceptions of interactions with primary care providers after direct-to-consumer personal genomic testing. Annals of internal medicine, 164(8), 513-522. https://doi.org/10.7326/M15-0995

Consumer perceptions of interactions with primary care providers after direct-to-consumer personal genomic testing. / Van Der Wouden, Cathelijne H.; Carere, Deanna Alexis; Maitland-Van Der Zee, Anke H.; Ruffin, Mac K T; Roberts, J. Scott; Green, Robert C.; Krier, Joel B.; Helm, Margaret H.; Lehmann, Lisa S.; Kraft, Peter; Le, Lan Q.; Ostergren, Jenny; Uhlmann, Wendy R.; Couper, Mick P.; Mountain, Joanna L.; Kiefer, Amy K.; Braunstein, Glenn D.; Crawford, Scott D.; Cupples, L. Adrienne; Chen, Clara A.; Wang, Catharine; Gray, Stacy W.; Koenig, Barbara A.; Kaphingst, Kimberly; Gollust, Sarah.

In: Annals of internal medicine, Vol. 164, No. 8, 19.04.2016, p. 513-522.

Research output: Contribution to journalArticle

Van Der Wouden, CH, Carere, DA, Maitland-Van Der Zee, AH, Ruffin, MKT, Roberts, JS, Green, RC, Krier, JB, Helm, MH, Lehmann, LS, Kraft, P, Le, LQ, Ostergren, J, Uhlmann, WR, Couper, MP, Mountain, JL, Kiefer, AK, Braunstein, GD, Crawford, SD, Cupples, LA, Chen, CA, Wang, C, Gray, SW, Koenig, BA, Kaphingst, K & Gollust, S 2016, 'Consumer perceptions of interactions with primary care providers after direct-to-consumer personal genomic testing', Annals of internal medicine, vol. 164, no. 8, pp. 513-522. https://doi.org/10.7326/M15-0995
Van Der Wouden CH, Carere DA, Maitland-Van Der Zee AH, Ruffin MKT, Roberts JS, Green RC et al. Consumer perceptions of interactions with primary care providers after direct-to-consumer personal genomic testing. Annals of internal medicine. 2016 Apr 19;164(8):513-522. https://doi.org/10.7326/M15-0995
Van Der Wouden, Cathelijne H. ; Carere, Deanna Alexis ; Maitland-Van Der Zee, Anke H. ; Ruffin, Mac K T ; Roberts, J. Scott ; Green, Robert C. ; Krier, Joel B. ; Helm, Margaret H. ; Lehmann, Lisa S. ; Kraft, Peter ; Le, Lan Q. ; Ostergren, Jenny ; Uhlmann, Wendy R. ; Couper, Mick P. ; Mountain, Joanna L. ; Kiefer, Amy K. ; Braunstein, Glenn D. ; Crawford, Scott D. ; Cupples, L. Adrienne ; Chen, Clara A. ; Wang, Catharine ; Gray, Stacy W. ; Koenig, Barbara A. ; Kaphingst, Kimberly ; Gollust, Sarah. / Consumer perceptions of interactions with primary care providers after direct-to-consumer personal genomic testing. In: Annals of internal medicine. 2016 ; Vol. 164, No. 8. pp. 513-522.
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title = "Consumer perceptions of interactions with primary care providers after direct-to-consumer personal genomic testing",
abstract = "Background: Direct-to-consumer (DTC) personal genomic testing (PGT) allows individuals to learn about their genetic makeup without going through a physician, but some consumers share their results with their primary care provider (PCP). Objective: To describe the characteristics and perceptions of DTC PGT consumers who discuss their results with their PCP. Design: Longitudinal, prospective cohort study. Setting: Online survey before and 6 months after results. Participants: DTC PGT consumers. Measurements: Consumer satisfaction with the DTC PGT experience; whether and, if so, how many results could be used to improve health; how many results were not understood; and beliefs about the PCP's understanding of genetics. Participants were asked with whom they had discussed their results. Genetic reports were linked to survey responses. Results: Among 1026 respondents, 63{\%} planned to share their results with a PCP. At 6-month follow-up, 27{\%} reported having done so, and 8{\%} reported sharing with another health care provider only. Common reasons for not sharing results with a health care provider were that the results were not important enough (40{\%}) or that the participant did not have time to do so (37{\%}). Among participants who discussed results with their PCP, 35{\%} were very satisfied with the encounter, and 18{\%} were not at all satisfied. Frequently identified themes in participant descriptions of these encounters were actionability of the results or use in care (32{\%}), PCP engagement or interest (25{\%}), and lack of PCP engagement or interest (22{\%}). Limitation: Participants may not be representative of all DTC PGT consumers. Conclusion: A comprehensive picture of DTC PGT consumers who shared their results with a health care provider is presented. The proportion that shares results is expected to increase with time after testing as consumers find opportunities for discussion at later appointments or if results become relevant as medical needs evolve.",
author = "{Van Der Wouden}, {Cathelijne H.} and Carere, {Deanna Alexis} and {Maitland-Van Der Zee}, {Anke H.} and Ruffin, {Mac K T} and Roberts, {J. Scott} and Green, {Robert C.} and Krier, {Joel B.} and Helm, {Margaret H.} and Lehmann, {Lisa S.} and Peter Kraft and Le, {Lan Q.} and Jenny Ostergren and Uhlmann, {Wendy R.} and Couper, {Mick P.} and Mountain, {Joanna L.} and Kiefer, {Amy K.} and Braunstein, {Glenn D.} and Crawford, {Scott D.} and Cupples, {L. Adrienne} and Chen, {Clara A.} and Catharine Wang and Gray, {Stacy W.} and Koenig, {Barbara A.} and Kimberly Kaphingst and Sarah Gollust",
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T1 - Consumer perceptions of interactions with primary care providers after direct-to-consumer personal genomic testing

AU - Van Der Wouden, Cathelijne H.

AU - Carere, Deanna Alexis

AU - Maitland-Van Der Zee, Anke H.

AU - Ruffin, Mac K T

AU - Roberts, J. Scott

AU - Green, Robert C.

AU - Krier, Joel B.

AU - Helm, Margaret H.

AU - Lehmann, Lisa S.

AU - Kraft, Peter

AU - Le, Lan Q.

AU - Ostergren, Jenny

AU - Uhlmann, Wendy R.

AU - Couper, Mick P.

AU - Mountain, Joanna L.

AU - Kiefer, Amy K.

AU - Braunstein, Glenn D.

AU - Crawford, Scott D.

AU - Cupples, L. Adrienne

AU - Chen, Clara A.

AU - Wang, Catharine

AU - Gray, Stacy W.

AU - Koenig, Barbara A.

AU - Kaphingst, Kimberly

AU - Gollust, Sarah

PY - 2016/4/19

Y1 - 2016/4/19

N2 - Background: Direct-to-consumer (DTC) personal genomic testing (PGT) allows individuals to learn about their genetic makeup without going through a physician, but some consumers share their results with their primary care provider (PCP). Objective: To describe the characteristics and perceptions of DTC PGT consumers who discuss their results with their PCP. Design: Longitudinal, prospective cohort study. Setting: Online survey before and 6 months after results. Participants: DTC PGT consumers. Measurements: Consumer satisfaction with the DTC PGT experience; whether and, if so, how many results could be used to improve health; how many results were not understood; and beliefs about the PCP's understanding of genetics. Participants were asked with whom they had discussed their results. Genetic reports were linked to survey responses. Results: Among 1026 respondents, 63% planned to share their results with a PCP. At 6-month follow-up, 27% reported having done so, and 8% reported sharing with another health care provider only. Common reasons for not sharing results with a health care provider were that the results were not important enough (40%) or that the participant did not have time to do so (37%). Among participants who discussed results with their PCP, 35% were very satisfied with the encounter, and 18% were not at all satisfied. Frequently identified themes in participant descriptions of these encounters were actionability of the results or use in care (32%), PCP engagement or interest (25%), and lack of PCP engagement or interest (22%). Limitation: Participants may not be representative of all DTC PGT consumers. Conclusion: A comprehensive picture of DTC PGT consumers who shared their results with a health care provider is presented. The proportion that shares results is expected to increase with time after testing as consumers find opportunities for discussion at later appointments or if results become relevant as medical needs evolve.

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