Developing a decision aid to facilitate patient-provider conversations about mechanical ventilation and lung transplantation to treat cystic fibrosis: lessons learned from usability testing (Preprint)

BACKGROUND Cystic fibrosis (CF) is a life-limiting genetic disease that causes chronic lung infections. We developed an internet-based decision aid (decision aid) to help CF patients make better informed decisions regarding treatments and advance care planning (ACP). We built the decision aid around two major treatment decisions: whether or not to have a lung transplant, and whether or not to agree to intubation. OBJECTIVE To present results from iterative usability testing of the InformedChoices Cystic Fibrosis advance care planning decision aid among adults with cystic fibrosis, their clinicians and family caregivers. METHODS We performed a patient needs assessment and “think aloud” usability testing with CF patients, their surrogates, and clinicians caring for CF patients. “Think aloud” participants provided feedback while navigating the decision aid and answered surveys. Session transcripts and survey results were categorized into common, generalizable themes and optimizations for improving content, comprehension, and navigation. RESULTS Participants gave the decision aid an average System Usability Scale (SUS) score of 88.33 (“excellent”). Comments were coded into three themes: Functionality, Visibility and Navigation, and Content and Usefulness. Areas for improvement included reducing repetition, enhancing comprehension, and changing the flow. CONCLUSIONS Usability testing revealed areas for potential improvement. Testing also yielded positive feedback, suggesting the decision aid’s future success.Integrating changes prior to implementation should improve the decision aid’s comprehension, navigation, and usefulness, and lead to greater adoption.

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Lessons Learned From a Pilot Project on Telemedicine Advance Care Planning in an Urban Geriatric Primary Care Office

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211036978 ◽

2021 ◽

pp. 104990912110369

Author(s):

Olivia M. Seecof ◽

Molly Allanoff ◽

John Liantonio ◽

Susan Parks

Keyword(s):

Primary Care ◽

Pilot Study ◽

Medical Record ◽

Advance Care Planning ◽

Pilot Project ◽

Lessons Learned ◽

Care Planning ◽

Geriatric Population ◽

Advance Care ◽

Primary Care Office

Purpose: There is a dearth of literature regarding the documentation of advance care planning (ACP) in the geriatric population, despite the controversial, yet well-studied need for ACP. The purpose of this pilot study was to provide an update to a prior study from our institution that outlined the need for increased documentation of advance care planning (ACP) in an urban geriatric population. Methods: Our study involved using telemedicine to conduct dedicated ACP visits and an electronic medical record (EMR) note-template specifically designed for these visits in an attempt to increase the amount of documented ACP in the EMR in this population. Results: The study did not yield significant results due to the inability to schedule enough patients for these dedicated visits. Discussion: While our study was ultimately unsuccessful, 3 crucial lessons were identified that will inform and fuel future interventions by the authors to further the study of documentation of ACP.

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Advance care planning dashboard: quality indicators and usability testing

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2021-003071 ◽

2021 ◽

pp. bmjspcare-2021-003071

Author(s):

Jingjie Xiao ◽

Jessica Simon ◽

Tracy Lynn Wityk Martin ◽

Patricia Biondo ◽

Konrad Fassbender

Keyword(s):

Community Of Practice ◽

Advance Care Planning ◽

Performance Indicators ◽

Care Planning ◽

Clinical Practices ◽

Convenience Sample ◽

Study Objective ◽

System Usability Scale ◽

System Usability ◽

Advance Care

ObjectiveAdvance care planning (ACP) and goals of care designation (GCD) performance indicators were developed and implemented across Alberta, Canada, and have been used to populate an electronic ACP/GCD dashboard. The study objective was to investigate whether users found the indicators and dashboard usable and acceptable.MethodsThis study employed a survey among a convenience sample of ACP/GCD community of practice members. The survey included questions on demographics, clinical practices and a validated usability questionnaire for the dashboard, System Usability Scale (SUS).ResultsEighteen of 33 community of practice members (54.5%) answered the survey. Half of participants had a leadership or management role for ≥10 years. Most respondents (55.6%) had access to the ACP/GCD dashboard, and various ACP/GCD audit resources were used. Mean SUS was 70.83 (SD 19.72), which was above the threshold for acceptability (68). Approximately three-quarters of respondents (72.7%) found the indicators informative and meaningful for their practice, and over half (54.5%) were willing to use the dashboard and/or indicators to change their ACP/GCD practice.ConclusionThe nine indicators and dashboard were acceptable and usable for monitoring ACP/GCD performance. This set of indicators shows promise for describing and evaluating ACP/GCD uptake throughout a complex, multisector healthcare system.

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An Effective Strategy to Increase Advance Care Planning: Use of a Patient Video Decision Aid in Outpatient Heart Failure (QI627)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2019.12.236 ◽

2020 ◽

Vol 59 (2) ◽

pp. 514

Author(s):

Janet Wulf ◽

Carol Wade

Keyword(s):

Heart Failure ◽

Advance Care Planning ◽

Decision Aid ◽

Care Planning ◽

Effective Strategy ◽

Advance Care

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O-11 Using the think aloud method to evaluate instrument design for a new survey of patient engagement with advance care planning (ACP)

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2015-000978.10 ◽

2015 ◽

Vol 5 (Suppl 2) ◽

pp. A3.3-A4

Author(s):

Aliya Kassam ◽

Maureen Douglas ◽

S Cunningham ◽

Konrad Fassbender ◽

Jessica E Simon ◽

...

Keyword(s):

Advance Care Planning ◽

Patient Engagement ◽

Instrument Design ◽

Care Planning ◽

Think Aloud ◽

Advance Care ◽

O 11

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Advance care planning in adolescents with cystic fibrosis: A quality improvement project

Pediatric Pulmonology ◽

10.1002/ppul.23559 ◽

2016 ◽

Vol 51 (12) ◽

pp. 1304-1310 ◽

Cited By ~ 13

Author(s):

Traci M. Kazmerski ◽

Daniel J. Weiner ◽

Janice Matisko ◽

Diane Schachner ◽

Whitney Lerch ◽

...

Keyword(s):

Cystic Fibrosis ◽

Quality Improvement ◽

Advance Care Planning ◽

Quality Improvement Project ◽

Care Planning ◽

Improvement Project ◽

Advance Care

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“There were more decisions and more options than just yes or no”: Evaluating a decision aid for advanced cancer patients and their family caregivers

Palliative & Supportive Care ◽

10.1017/s1478951516000596 ◽

2016 ◽

Vol 15 (1) ◽

pp. 44-56 ◽

Cited By ~ 8

Author(s):

Marie Bakitas ◽

J. Nicholas Dionne-Odom ◽

Lisa Jackson ◽

Jennifer Frost ◽

Margaret F. Bishop ◽

...

Keyword(s):

Decision Making ◽

Palliative Care ◽

Advance Care Planning ◽

Decision Aid ◽

Care Planning ◽

Serious Illness ◽

Early Palliative Care ◽

Advance Care ◽

Seriously Ill Patients ◽

Seriously Ill

AbstractObjective:Few decision aids are available for patients with a serious illness who face many treatment and end-of-life decisions. We evaluated the Looking Ahead: Choices for Medical Care When You're Seriously Ill® patient decision aid (PtDA), one component of an early palliative care clinical trial.Method:Our participants included individuals with advanced cancer and their caregivers who had participated in the ENABLE (Educate, Nurture, Advise, Before Life Ends) early palliative care telehealth randomized controlled trial (RCT) conducted in a National Cancer Institute-designated cancer center, a U.S. Department of Veterans Affairs medical center, and affiliated outreach clinics in rural New England. ENABLE included six weekly patient and three weekly family caregiver structured sessions. Participants watched the Looking Ahead PtDA prior to session 3, which covered content on decision making and advance care planning. Nurse coaches employed semistructured interviews to obtain feedback from consecutive patient and caregiver participants approximately one week after viewing the Looking Ahead PtDA program (booklet and DVD).Results:Between April 1, 2011, and October 31, 2012, 57 patients (mean age = 64), 42% of whom had lung and 23% gastrointestinal cancer, and 20 caregivers (mean age = 59), 80% of whom were spouses, completed the PtDA evaluation. Participants reported a high degree of satisfaction with the PtDA format, as well as with its length and clarity. They found the format of using patient interviews “validating.” The key themes were: (1) “the earlier the better” to view the PtDA; (2) feeling empowered, aware of different options, and an urgency to participate in advance care planning.Significance of results:The Looking Ahead PtDA was well received and helped patients with a serious illness realize the importance of prospective decision making in guiding their treatment pathways. We found that this PtDA can help seriously ill patients prior to the end of life to understand and discuss future healthcare decision making. However, systems to routinely provide PtDAs to seriously ill patients are yet not well developed.

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