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An Environmental Scan of Advance Care Planning Decision Aids for Patients Undergoing Major Surgery: A Study Protocol

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Abstract

Background

Patients who undergo major surgery are at risk for perioperative morbidity and mortality. It would be appropriate to initiate advance care planning with patients prior to surgery, but surgeons may experience difficulty initiating such conversations. Rather than focus on changing clinician behavior, advance care planning decision aids can be an innovative vehicle to motivate advance care planning among surgical patients and their families.

Objective

The purpose of this paper is to describe a study protocol for conducting an environmental scan concerning advance care planning decision aids that may be relevant to patients undergoing high-risk surgery.

Methods/design

This study will gather information from written or verbal data sources that incorporate professional and lay perspectives: a systematic review, a grey literature review, key informant interviews, and patient and family engagement. It is envisioned that this study will generate three outcomes: a synthesis of current evidence, a summary of gaps in knowledge, and a taxonomy of existing advance care planning decision aids.

Discussion

This environmental scan will demonstrate principles of patient-centered outcomes research, and it will exemplify a pioneering approach for reviewing complex interventions. Anticipated limitations are that information will be gathered from a small sample of patients and families, and that potentially relevant information could also be missing from the environmental scan due to the inclusion/exclusion criteria. Outcomes from the environmental scan will inform future patient-centered research to develop and evaluate a new decision aid.

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Acknowledgments

This work was (partially) supported through a Patient-Centered Outcomes Research Institute (PCORI) Communication and Dissemination Research Award (CD-12-11-4362).

RAA is the guarantor for the overall content of this paper. RAA, JM, MW, and JFPB made substantial contributions to the study design and generation of content. AEV and RAA generated the key informants contact list and contributed to content generation. RAA, ALRS, and JFPB have drafted the manuscript. All authors have reviewed it critically, edited content, and have given approval of the final version to be submitted.

AEV’s spouse is the Executive Director of a non-profit foundation 501(c)3, Nous Foundation Inc. The mission of the non-profit is to educate patients about advance care planning. The authors have no further potential conflicts of interest to report.

Author information

Authors and Affiliations

  1. Department of Anesthesiology and Critical Care Medicine, The Johns Hopkins School of Medicine, 600 North Wolfe Street, Meyer 297A, Baltimore, MD, 21287-7295, USA

    Rebecca A. Aslakson

  2. Department of Health Policy and Management, The Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Anne L. R. Schuster & John F. P. Bridges

  3. Department of Surgery, The Johns Hopkins School of Medicine, Baltimore, MD, USA

    Matthew Weiss

  4. General Medicine Unit, Massachusetts General Hospital, Boston, MA, USA

    Angelo E. Volandes

  5. Ellicott City, MD, USA

    Judith Miller

Authors
  1. Rebecca A. Aslakson
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  2. Anne L. R. Schuster
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  3. Judith Miller
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  4. Matthew Weiss
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  5. Angelo E. Volandes
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  6. John F. P. Bridges
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Corresponding author

Correspondence to Rebecca A. Aslakson.

Additional information

Registration of systematic review: The systematic review protocol has been registered with PROSPERO (Record #42013005399).

Appendix A: List of organizations’ websites to be searched for advance care planning decision aids

Appendix A: List of organizations’ websites to be searched for advance care planning decision aids

The American Cancer Society, the American Geriatrics Society, The American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the National Palliative Care Research Center, National Institute of Health-National Institute for Aging, the Coalition to Transform Advanced Care, AARP, the Informed Medical Decisions Foundation, the Center for Shared Decision Making, the International Patient Decision Aids Standards, National Quality Forum, Family Caregiver Alliance, Gerontological Society of America, Medline Plus (NIH), National Cancer Institute, National Hospice and Palliative Care Organization, Heart Failure Society of America, Agency for Healthcare Research and Quality, Mayo Clinic, the National Coalition of Cancer Survivors, and the American Society of Clinical Oncology.

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Aslakson, R.A., Schuster, A.L.R., Miller, J. et al. An Environmental Scan of Advance Care Planning Decision Aids for Patients Undergoing Major Surgery: A Study Protocol. Patient 7, 207–217 (2014). https://doi.org/10.1007/s40271-014-0046-3

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