Developing the Storyline for an Advance Care Planning Video for Surgery Patients: Patient-Centered Outcomes Research Engagement from Stakeholder Summit to State Fair.

BACKGROUND Patient-centered outcomes research (PCOR) methods and social learning theory (SLT) require intensive interaction between researchers and stakeholders. Advance care planning (ACP) is valuable before major surgery, but a systematic review found no extant perioperative ACP tools. Consequently, PCOR methods and SLT can inform the development of an ACP educational video for patients and families preparing for major surgery. OBJECTIVE The objective is to develop and test acceptability of an ACP video storyline. DESIGN The design is a stakeholder-guided development of the ACP video storyline. Design-thinking methods explored and prioritized stakeholder perspectives. Patients and family members evaluated storyboards containing the proposed storyline. SETTING/SUBJECTS The study was conducted at hospital outpatient surgical clinics, in-person stakeholder summit, and the 2014 Maryland State Fair. MEASUREMENTS Measurements are done through stakeholder engagement and deidentified survey. RESULTS Stakeholders evaluated and prioritized evidence from an environmental scan. A surgeon, family member, and palliative care physician team iteratively developed a script featuring 12 core themes and worked with a medical graphic designer to translate the script into storyboards. For 10 days, 359 attendees of the 2014 Maryland State Fair evaluated the storyboards and 87% noted that they would be "very comfortable" or "comfortable" seeing the storyboard before major surgery, 89% considered the storyboards "very helpful" or "helpful," and 89% would "definitely recommend" or "recommend" this story to others preparing for major surgery. CONCLUSIONS Through an iterative process utilizing diverse PCOR engagement methods and informed by SLT, storyboards were developed for an ACP video. Field testing revealed the storyline to be highly meaningful for surgery patients and family members.

[1]  J. Bridges,et al.  Promoting perioperative advance care planning: a systematic review of advance care planning decision aids. , 2015, Journal of comparative effectiveness research.

[2]  K. Smith,et al.  Why don't end-of-life conversations go viral? A review of videos on YouTube , 2015, BMJ Supportive & Palliative Care.

[3]  M. Barry,et al.  A Randomized Controlled Trial of a CPR and Intubation Video Decision Support Tool for Hospitalized Patients , 2015, Journal of General Internal Medicine.

[4]  Lori Frank,et al.  The PCORI perspective on patient-centered outcomes research. , 2014, JAMA.

[5]  J. Bridges,et al.  Creating an advance-care-planning decision aid for high-risk surgery: a qualitative study , 2014, BMC Palliative Care.

[6]  J. Bridges,et al.  An Environmental Scan of Advance Care Planning Decision Aids for Patients Undergoing Major Surgery: A Study Protocol , 2014, The Patient - Patient-Centered Outcomes Research.

[7]  G. Abou-Alfa,et al.  A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients. , 2013, Journal of palliative medicine.

[8]  M. Barry,et al.  Randomized controlled trial of a video decision support tool for cardiopulmonary resuscitation decision making in advanced cancer. , 2013, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[9]  E. Witkowski,et al.  Perioperative mortality after pancreatectomy: a risk score to aid decision-making. , 2012, Surgery.

[10]  G. Brandeis,et al.  A randomized controlled trial of a goals-of-care video for elderly patients admitted to skilled nursing facilities. , 2012, Journal of palliative medicine.

[11]  M. Bakitas,et al.  Palliative medicine and decision science: the critical need for a shared agenda to foster informed patient choice in serious illness. , 2011, Journal of palliative medicine.

[12]  Nathan C Hull,et al.  Assessing end-of-life preferences for advanced dementia in rural patients using an educational video: a randomized controlled trial. , 2011, Journal of palliative medicine.

[13]  Sean M. O'Brien,et al.  STS database risk models: predictors of mortality and major morbidity for lung cancer resection. , 2010, The Annals of thoracic surgery.

[14]  R. Sudore,et al.  Redefining the “Planning” in Advance Care Planning: Preparing for End-of-Life Decision Making , 2010, Annals of Internal Medicine.

[15]  M. Barry,et al.  Use of video to facilitate end-of-life discussions with patients with cancer: a randomized controlled trial. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[16]  M. Paasche-Orlow,et al.  Overcoming educational barriers for advance care planning in Latinos with video images. , 2008, Journal of palliative medicine.

[17]  E. Ely,et al.  Brain dysfunction: another burden for the chronically critically ill. , 2006, Archives of internal medicine.

[18]  L Goldman,et al.  Multifactorial index of cardiac risk in noncardiac surgical procedures. , 1977, The New England journal of medicine.

[19]  J. Luce,et al.  Increasing incidence of withholding and withdrawal of life support from the critically ill. , 1997, American journal of respiratory and critical care medicine.