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An advance care plan decision support video before major surgery: a patient- and family-centred approach
  1. Sarina R Isenberg1,2,3,4,
  2. Norah L Crossnohere1,
  3. Manali I Patel5,
  4. Alison Conca-Cheng6,
  5. John F P Bridges,
  6. Sandy M Swoboda7,8,
  7. Thomas J Smith9,10,
  8. Timothy M Pawlik11,
  9. Matthew Weiss12,
  10. Angelo E Volandes13,
  11. Anne Schuster14,15,16,
  12. Judith A Miller17,
  13. Carolyn Pastorini18,
  14. Debra L Roter1 and
  15. Rebecca A Aslakson15
  1. 1Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA
  2. 2Department of Family and Community Medicine - Division of Palliative Care, University of Toronto, Toronto, Ontario, Canada
  3. 3Division of Oncology, Stanford University School of Medicine, Stanford, California, USA
  4. 4Department of Anesthesiology, Johns Hopkins Hospital and Health System, Baltimore, Maryland, USA
  5. 5Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland, USA
  6. 6School of Nursing, Johns Hopkins University, Baltimore, Maryland, USA
  7. 7Department of Medicine, Johns Hopkins Hospital and Health System, Baltimore, Maryland, USA
  8. 8Department of Oncology, Johns Hopkins Hospital and Health System, Baltimore, Maryland, USA
  9. 9Department of Surgery, Wexner Medical Center, Ohio State University, Columbus, Ohio, USA
  10. 10Department of Surgery, Johns Hopkins Hospital, Baltimore, Maryland, USA
  11. 11Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts, USA
  12. 12University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA
  13. 13Department of Anesthesiology, Johns Hopkins Hospital, Baltimore, Maryland, USA
  14. 14Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA
  15. 15Patient/Family Member Co-investigator, Architecture by Design, Ellicott City, Maryland, USA
  16. 16Patient/Family Member Co-investigator, Baltimore, Maryland, USA
  17. 17Temmy Latner Centre for Palliative Care, Sinai Health System, Toronto, Ontario, Canada
  18. 18Lunenfeld-Tanenbaum Research Institute, Sinai Health System, Toronto, Ontario, Canada
  1. Correspondence to Dr Sarina R Isenberg, Temmy Latner Centre for Palliative Care and Lunenfeld-Tanenbaum Research Institute, Sinai Health System, 60 Murray Street, 4th floor, Box 13, Toronto, Ontario, Canada M5T 3L9; sarina.isenberg{at}


Objective Video-based advanc care planning (ACP) tools have been studied in varied medical contexts; however, none have been developed for patients undergoing major surgery. Using a patient- and family-centredness approach, our objective was to implement human-centred design (HCD) to develop an ACP decision support video for patients and their family members when preparing for major surgery.

Design and methods The study investigators partnered with surgical patients and their family members, surgeons and other health professionals to design an ACP decision support video using key HCD principles. Adapting Maguire’s HCD stages from computer science to the surgical context, while also incorporating Elwyn et al’s specifications for patient-oriented decision support tool development, we used a six-stage HCD process to develop the video: (1) plan HCD process; (2) specify where video will be used; (3) specify user and organisational requirements; (4) produce and test prototypes; (5) carry out user-based assessment; (6) field test with end users.

Results Over 450 stakeholders were engaged in the development process contributing to setting objectives, applying for funding, providing feedback on the storyboard and iterations of the decision tool video. Throughout the HCD process, stakeholders’ opinions were compiled and conflicting approaches negotiated resulting in a tool that addressed stakeholders’ concerns.

Conclusions Our patient- and family-centred approach using HCD facilitated discussion and the ability to elicit and balance sometimes competing viewpoints. The early engagement of users and stakeholders throughout the development process may help to ensure tools address the stated needs of these individuals.

Trial registration number NCT02489799.

  • advance care planning
  • surgery
  • patient- and family-centred care
  • human-centred design
  • decision support tools

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  • Contributors All authors contributed meaningfully to the manuscript. The roles of involvement and initials of the coauthors are detailed as follows: Study design: SRI, RAA, AEV, JFPB, DLR, MIP, SMS, TJS, TMP, MW, JAM, CP, AS. Analysis design: SRI, RAA, NLC, DLR, MIP, JFPB, SMS, TJS, JAM, CP, AS. Manuscript writing: SRI, RAA, NLC, DLR, AC-C, MIP, TJS. Manuscript review: SRI, RAA, MW, AEV, JFPB, DLR, NLC, AC-C, MIP, SMS, TJS, TMP, JAM, CP, AS.

  • Funding This work was supported by a Patient-Centered Outcomes Research Institute (PCORI) Award (CD-12-11-4362). SRI was supported by the Canadian Institutes of Health Research #146181.

  • Disclaimer The statements in this article are solely the responsibility of the authors and do not necessarily represent the views of the PCORI, its Board of Governors or Methodology Committee.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval The Johns Hopkins School of Medicine Institutional Review Board approved related study protocols.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.