Serious Choices: A Systematic Environmental Scan of Decision Aids and Their Use for Seriously Ill People Near Death

Saunders, Catherine; Patel, Khusbu; Kang, Hyun-Kyung; Elwyn, Glyn; Kirkland, Kathryn B.; Durand, Marie-Anne

doi:10.12788/jhm.3110

Cited by 9 publications

(4 citation statements)

References 39 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…These tools are related to ACP, shared decision making, and end-of-life care. Some studies in these reviews also included Web-based or computerized programs [14,[20][21][22][23][24]. None of these reviews focused specifically on empirically evaluated, Web-based, and available programs for ACP and their feasibility and effectiveness.…”

Section: Introductionmentioning

confidence: 99%

The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review

et al. 2020

View full text Add to dashboard Cite

Background Advance care planning (ACP) is a process with the overall aim to enhance care in concordance with patients’ preferences. Key elements of ACP are to enable persons to define goals and preferences for future medical treatment and care, to discuss these with family and health care professionals, and to document and review these if appropriate. ACP is usually conducted through personal conversations between a health care professional, a patient, and—if appropriate—family members. Although Web-based ACP programs have the potential to support patients in ACP, their effectiveness is unknown. Objective This study aimed to assess the feasibility and effectiveness of Web-based, interactive, and person-centered ACP programs. Methods We systematically searched for quantitative and qualitative studies evaluating Web-based, interactive, and person-centered ACP programs in seven databases including EMBASE, Web of Science, Cochrane Central and Google Scholar. Data on the characteristics of the ACP programs’ content (using a predefined list of 10 key elements of ACP), feasibility, and effectiveness were extracted using a predesigned form. Results Of 3434 titles and abstracts, 27 studies met the inclusion criteria, evaluating 11 Web-based ACP programs—10 were developed in the United States and one in Ireland. Studied populations ranged from healthy adults to patients with serious conditions. Programs typically contained the exploration of goals and values (8 programs), exploration of preferences for treatment and care (11 programs), guidance for communication about these preferences with health care professionals or relatives (10 programs), and the possibility to generate a document in which preferences can be recorded (8 programs). Reportedly, participants were satisfied with the ACP programs (11/11 studies), considering them as easy to use (8/8 studies) and not burdensome (7/8 studies). Designs of 13 studies allowed evaluating the effectiveness of five programs. They showed that ACP programs significantly increased ACP knowledge (8/8 studies), improved communication between patients and their relatives or health care professionals (6/6 studies), increased ACP documentation (6/6 studies), and improved concordance between care as preferred by the patients and the decisions of clinicians and health care representatives (2/3 studies). Conclusions Web-based, interactive, and person-centered ACP programs were mainly developed and evaluated in the United States. They contained the key elements of ACP, such as discussing and documenting goals and preferences for future care. As participants considered programs as easy to use and not burdensome, they appeared to be feasible. Among the 13 studies that measured the effectiveness of programs, improvement in ACP knowledge, communication, and documentation was reported. The concordance between preferred and received care is yet understudied. Studies with high-quality study designs in different health care settings are warranted to further establish the feasibility and effectiveness of Web-based ACP programs.

show abstract

Section: Introductionmentioning

confidence: 99%

The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review

et al. 2020

View full text Add to dashboard Cite

show abstract

“…We employed an environmental scan to assess evidence-based necessity and optimal design strategy [24] , yielding a complete landscape of existing DAs related to the topic of RRT decision making. We searched Ottawa Patient Decision Aids [25] , PubMed, Google Scholar, and mobile App Stores from the earliest available dates to June 2019.…”

Section: Competitive Analysismentioning

confidence: 99%

Development of a Decision Aid for Family Surrogate Decision Makers of Critically Ill Patients Requiring Renal Replacement Therapy in ICU: A User-Centered Design for Rapid Prototyping

Zheng,

Zhang,

Cao

et al. 2024

Chinese Medical Sciences Journal

View full text Add to dashboard Cite

Objectives Renal replacement therapy (RRT) is increasingly adopted for critically ill patients diagnosed with acute kidney injury, but the optimal time for initiation remains unclear and prognosis is uncertain, leading to medical complexity, ethical conflicts, and decision dilemmas in intensive care unit (ICU) settings. This study aimed to develop a decision aid (DA) for family surrogate of critically ill patients to support their engagement in shared decision-making process with clinicians. Methods Development of DA employed a systematic process with user-centered design (UCD) principle, which included: (i) competitive analysis: searched, screened, and assessed the existing DAs to gather insights for design strategies, developmental techniques, and functionalities; (ii) user needs assessment: interviewed family surrogates to explore target user group's decision-making experience and identify their unmet needs; (iii) evidence syntheses: integrate latest clinical evidence and pertinent information to inform the content development of DA. ResultsThe competitive analysis included 16 relevant DAs, from which we derived valuable insights from existing resources. User decision needs were explored among a cohort of 15 family surrogates, revealing four thematic issues in decision-making, including stuck into dilemmas, sense of uncertainty, limited capacity, and delayed decision confirmation. A total of 27 articles were included for evidence syntheses. Relevant decisionmaking knowledge on disease and treatment, as delineated in the literature sourced from decision support system or clinical guidelines, were formatted as the foundational knowledge base. Twenty-one items of evidence were extracted and integrated into the content panels of benefits and risks of RRT, possible outcomes, and reasons to choose. The DA was drafted into a web-based phototype using the elements of UCD. This platform could guide users make preparation of decision-making through a sequential four-step progress: identifying treatment options, weighing the benefits and risks, clarifying personal preferences and values, and formulating a schedule for formal shared decision-making with clinicians. Conclusions We developed a rapid prototype of DA tailored for family surrogate decision makers of critically ill patients in need of RRT in ICU setting. Future studies are needed to evaluate its usability, feasibility, and clinical effects of this intervene.

show abstract

“…With broader reach and inclusive criteria than systematic review, an environmental scan was used to yield a more complete landscape of available DA resources related to RRT decision making, involving resources from both academic researchers and private organizations [29]. This method enabled us to gain insights from existing competitors through their decision support tactics and development strategies.…”

Section: Phase 1: Competitive Analysismentioning

confidence: 99%

Development of digital decision aid among surrogate decision makers for critically ill patients requiring renal replacement therapy: a formative research study

Zheng

Cao

Yin

et al. 2023

Preprint

View full text Add to dashboard Cite

Introduction: Renal replacement therapy (RRT) is increasingly being adopted for critically ill patients suffering from acute kidney injury, followed by inevitably high rates of morbidity and mortality. Whether or not to choose RRT for critically ill patients is a significant concern of surrogate decision makers, which issues a serious decision dilemma. While few evidence supports for surrogates to make the best decision when their loved ones face the possibility of RRT in ICU. The aim of our study is to develop a decision aid through user-centered design to help surrogate decision making for critical illness requiring RRT. Methods: We conducted a user-centered design to develop the decision aid, with following four steps: (1) competitive analysis - to gain insights from the decision support tactics and development strategies of existing decision aids through a systematic environmental scan; (2) user needs assessment - to explore targeted user decisional needs by semi-structured interviews with surrogate decision makers; (3) user persona - to develop a typical user persona by users’ context immersion to inform subsequent development strategies; (4) evidence synthesis - synthesize latest clinical evidence on RRT decision making according to above requirements. Results: The rapid prototyping of the RRT decision aid brought four steps to achieve the best decision making, including identifying the treatment decisions, weighing the benefits and risks, clarifying values and preferences, and making the decision. We identified sixteen available decision aids related to RRT in the areas of end-of-life issues (N=2), end-stage renal disease (N=5), and chronic kidney disease (N=9). Available resources informed us of insights from the evidence-based necessity for development, the effective tool to collect primary sources, content presentation, and interactive features. We conducted semi-structured interviews with fifteen family surrogates to explore their decisional needs for their loved ones in an ICU setting. Four thematic domains of stuck into dilemmas, limited capacity, sense of uncertainty, and delayed confirmation were identified by qualitative descriptive analysis, which was further refined into targeted users’ potential needs of professional support, role guidance, information needs, and value clarification. The typical user persona “Booby”, a family surrogate decision maker for his elderly father diagnosed with septic AKI after ICU admission, was constructed to help understand users’ needs and inform design choices through context immersion. We searched a total of 15, 220 records from databases and websites between Dec 2019 and May 2020, and 27 studies were included to form the main content of the prototype. Evidence from eligible studies was extracted manually and classified as aspects of benefits and risks of RRT, possible outcomes, and reasons to choose, to provide comprehensive evidence-based decision support. Conclusions: We have rapidly prototyped a digital decision aid using a user-centered design targeted at family surrogate decision makers of critically ill patients requiring RRT in ICU. Future studies are warranted to evaluate the usability, feasibility, and comprehensibility of the decision aid through iterative refinement. Trial Registration: ChiCTR2000031613

show abstract

Serious Choices: A Systematic Environmental Scan of Decision Aids and Their Use for Seriously Ill People Near Death

Cited by 9 publications

References 39 publications

The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review

The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review

Development of a Decision Aid for Family Surrogate Decision Makers of Critically Ill Patients Requiring Renal Replacement Therapy in ICU: A User-Centered Design for Rapid Prototyping

Development of digital decision aid among surrogate decision makers for critically ill patients requiring renal replacement therapy: a formative research study

Contact Info

Product

Resources

About