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Research ArticleOriginal Research

Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings

Michelle Howard, Carole A. Robinson, Michael McKenzie, Gillian Fyles, Rebecca L. Sudore, Elizabeth Andersen, Neha Arora, Doris Barwich, Carrie Bernard, Dawn Elston, Rebecca Heyland, Doug Klein, Erin McFee, Lawrence Mroz, Marissa Slaven, Amy Tan and Daren K. Heyland
The Annals of Family Medicine March 2020, 18 (2) 110-117; DOI: https://doi.org/10.1370/afm.2471
Michelle Howard
PhD
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  • For correspondence: mhoward@mcmaster.ca
Carole A. Robinson
PhD
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Michael McKenzie
MD, FRCPC
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Gillian Fyles
MD
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Rebecca L. Sudore
MD
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Elizabeth Andersen
PhD
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Neha Arora
MSc
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Doris Barwich
MD, CCFP
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Carrie Bernard
MD, FCFP
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Dawn Elston
MA
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Rebecca Heyland
BSc
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Doug Klein
MD, CCFP
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Erin McFee
BScN
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Lawrence Mroz
PhD
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Marissa Slaven
MD
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Amy Tan
MD, CCFP
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Daren K. Heyland
MD, FRCPC
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Abstract

PURPOSE Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics.

METHODS We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement.

RESULTS In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations.

CONCLUSIONS Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.

Key words
  • advance care planning
  • end of life care
  • decision making
  • decision support techniques
  • behavior
  • prospective studies
  • patient engagement
  • primary care
  • oncology
  • Received for publication November 18, 2018.
  • Revision received May 12, 2019.
  • Accepted for publication May 24, 2019.
  • © 2020 Annals of Family Medicine, Inc.
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Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings
Michelle Howard, Carole A. Robinson, Michael McKenzie, Gillian Fyles, Rebecca L. Sudore, Elizabeth Andersen, Neha Arora, Doris Barwich, Carrie Bernard, Dawn Elston, Rebecca Heyland, Doug Klein, Erin McFee, Lawrence Mroz, Marissa Slaven, Amy Tan, Daren K. Heyland
The Annals of Family Medicine Mar 2020, 18 (2) 110-117; DOI: 10.1370/afm.2471

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Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings
Michelle Howard, Carole A. Robinson, Michael McKenzie, Gillian Fyles, Rebecca L. Sudore, Elizabeth Andersen, Neha Arora, Doris Barwich, Carrie Bernard, Dawn Elston, Rebecca Heyland, Doug Klein, Erin McFee, Lawrence Mroz, Marissa Slaven, Amy Tan, Daren K. Heyland
The Annals of Family Medicine Mar 2020, 18 (2) 110-117; DOI: 10.1370/afm.2471
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Subjects

  • Domains of illness & health:
    • Chronic illness
  • Person groups:
    • Older adults
  • Methods:
    • Quantitative methods
  • Core values of primary care:
    • Comprehensiveness
    • Coordination / integration of care
    • Personalized care
  • Other topics:
    • Ethics
    • Communication / decision making

Keywords

  • advance care planning
  • end of life care
  • decision making
  • decision support techniques
  • behavior
  • prospective studies
  • patient engagement
  • primary care
  • oncology

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