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Assessing Shared Decision-Making Clinical Behaviors Among Genetic Counsellors

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Journal of Genetic Counseling

Abstract

Shared decision-making (SDM) is a collaborative approach in which clinicians educate, support, and guide patients as they make informed, value-congruent decisions. SDM improves patients’ health-related outcomes through increasing knowledge, reducing decisional conflict, and enhancing experience of care. We measured SDM in genetic counselling appointments with 27 pregnant women who were at increased risk to have a baby with a genetic abnormality. The eight experienced genetic counsellors who participated had no specific SDM training and were unaware that SDM was being assessed. Audio transcripts of appointments were scored using ‘Observing Patient Involvement in Decision Making’ (OPTION12). Patients’ anxiety and decisional conflict were also assessed. The genetic counsellors’ mean OPTION12 score was 42.4% (SD 9.0%; possible range 0–100%). Specific SDM behaviours that scored highest included introducing the concept of equipoise and listing all options with their pros and cons. Behaviours that scored lowest included eliciting patients’ preferred approach to receiving information and desired degree of involvement in decision-making. Patients’ levels of anxiety and decisional conflict were unassociated with genetic counsellors’ OPTION12 scores. Some SDM behaviours were better demonstrated in this prenatal genetic counselling study than others. Formal training of genetic counsellors in SDM may enhance use of this approach in their professional practice.

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Acknowledgements

This study was supported by APOGEE-Net\CanGèneTest. The authors wish to thank the families who allowed us to record their counselling sessions at a stressful time as well as the genetics counsellors who shared their time and expertise with us: Susan Creighton, Sara Hamilton, Harindar Heran, Jane Hurlburt, Stephanie Kieffer, David Koehn, Tracey Oh, Rosemarie Rupps, Karan Sangha, Dawn Siciliano, and Anne Swenerton. At the time of this study, FL was Tier 2 Canada Research Chair in implementation of shared decision-making in primary care. As of June 1, 2016, FL is Tier 1 Canada Research Chair in shared decision-making and knowledge translation.

Authorship Contributions

Concept or design of the study: Patricia Birch, Shelin Adam, Martina Vortel, Jan Friedman.

Acquisition, analysis, or interpretation of data for the study, drafting or critical revision of the article for important intellectual content, agreement to be accountable for all aspects of the article in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved, and final approval of the paper: Patricia Birch, Shelin Adam, Ashley Port, Martina Vortel, Rachel Coe, Jan Friedman, and France Legaré.

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Correspondence to Patricia H. Birch.

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Conflict of Interest

Patricia Birch, Shelin Adam, Ashley Port, Martina Vortel, Rachel Coe, Jan Friedman, and France Legaré declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients and genetic counsellors included in the study, and genetic counsellors provided consent to be named in the acknowledgements.

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Birch, P.H., Adam, S., Coe, R.R. et al. Assessing Shared Decision-Making Clinical Behaviors Among Genetic Counsellors. J Genet Counsel (2018). https://doi.org/10.1007/s10897-018-0285-x

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  • DOI: https://doi.org/10.1007/s10897-018-0285-x

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