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The Development of Delta: Using Agile to Develop a Decision Aid for Pediatric Oncology Clinical Trial Enrollment.

ABSTRACT: BACKGROUND:The internet is increasingly being used to disseminate health information. Given the complexity of pediatric oncology clinical trials, we developed Delta, a Web-based decision aid to support families deciding whether or not to enroll their child with cancer in a clinical trial. OBJECTIVE:This paper details the Agile development process of Delta and user testing results of Delta. METHODS:Development was iterative and involved 5 main stages: a requirements analysis, planning, design, development, and user testing. For user testing, we conducted 13 eye-tracking analyses and think-aloud interviews with health care professionals (n=6) and parents (n=7). RESULTS:Results suggested that there was minimal rereading of content and a high level of engagement in content. However, there were some navigational problems. Participants reported high acceptability (12/13) and high usability of the website (8/13). CONCLUSIONS:Delta demonstrates the utility for the use of Agile in the development of a Web-based decision aid for health purposes. Our study provides a clear step-by-step guide to develop a Web-based psychosocial tool within the health setting.

SUBMITTER: Robertson EG

PROVIDER: S-EPMC5960036 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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The Development of Delta: Using Agile to Develop a Decision Aid for Pediatric Oncology Clinical Trial Enrollment.

Robertson Eden G EG Wakefield Claire E CE Cohn Richard J RJ O'Brien Tracey T Ziegler David S DS Fardell Joanna E JE

JMIR research protocols 20180504 5

<h4>Background</h4>The internet is increasingly being used to disseminate health information. Given the complexity of pediatric oncology clinical trials, we developed Delta, a Web-based decision aid to support families deciding whether or not to enroll their child with cancer in a clinical trial.<h4>Objective</h4>This paper details the Agile development process of Delta and user testing results of Delta.<h4>Methods</h4>Development was iterative and involved 5 main stages: a requirements analysis ...[more]

PMID: 29728347

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Project description:IntroductionMany parents who choose hypospadias repair for their sons experience decisional conflict (DC) and decisional regret (DR). We previously found that parental decision-making about hypospadias surgery is a complex process characterized by cyclic information-seeking to alleviate anxiety and confusion.ObjectiveThe objective of this study was to engage parents of hypospadias patients and pediatric providers in the co-design of a decision aid (DA) prototype to facilitate shared decision-making about hypospadias surgery and address DC and DR.MethodsFrom August 2018 to January 2019, we conducted three co-design workshops with parents of hypospadias patients, pediatric urology and general pediatric providers to discuss their recommendations for a DA prototype. Activities were audio recorded and professionally transcribed. Transcripts and worksheets were analyzed by six coders using qualitative analysis to identify key aspects of a hypospadias DA desired by stakeholders. We conducted a collaborative design and prototyping session to establish key features and requirements, created a content map visualizing this work, and then developed a DA prototype.ResultsParent participants included 6 mothers and 4 fathers: 8 Caucasian, 2 African-American; median age 31 years. Providers included pediatric urology (n = 7) and general pediatric providers (n = 10): median age 47.5 years, 83.3% Caucasian, 58.3% male, 58.3% MD's and 41.7% nurse practitioners. Participants created user-friendly, interactive DA prototypes with "24/7" availability that had three key functions: 1) provide accurate, customizable, educational content, 2) connect parents with each other, and 3) engage them in a decision-making activity. The prototype consisted of five modules (Extended Summary Figure). "Hypospadias Basics" includes epidemiology and a hypospadias severity scale. "Surgery Basics" includes goals, illustrated steps, and pros/cons of surgery. "Testimonials" includes videos of parents and adolescents discussing their experiences. "Help me Decide" includes a decisional conflict scale and a decision-making activity (i.e. values clarification method). "Frequently Asked Questions" covers general hypospadias information, perioperative expectations and a review of postoperative care.DiscussionTo our knowledge, this is the first DA prototype developed for a pediatric urology condition using a human-centered design approach to engage many key stakeholders in the development process. One limitation of this study is the small population sampled, which limits generalizability and means that our findings may not reflect the views of all parents or pediatric providers involved in hypospadias decision-making.ConclusionsWe created a parent-centered hypospadias DA prototype that provides decision support in an online, interactive format. Future directions include further testing with usability experts, providers and parents.

Project description:Objective: The objective was to develop a decision aid (DA) to facilitate shared decision making (SDM) around whether to obtain computed tomography (CT) imaging in patients presenting to the emergency department (ED) with suspected uncomplicated ureterolithiasis.Methods: We used evidence-based DA development methods, including qualitative methods and iterative stakeholder engagement, to develop and refine a DA. Guided by the Ottawa Decision Support Framework, International Patient Decision Aid Standards (IPDAS), and a steering committee made up of stakeholders, we conducted interviews and focus groups with a purposive sample of patients, community members, emergency clinicians, and other stakeholders. We used an iterative process to code the transcripts and identify themes. We beta-tested the DA with patient-clinician dyads facing the decision in real time.Results: From August 2018 to August 2019, we engaged 102 participants in the design and iterative refinement of a DA focused on diagnostic options for patients with suspected ureterolithiasis. Forty-six were ED patients, community members, or patients with ureterolithiasis, and the remaining were emergency clinicians (doctors, residents, advanced practitioners), researchers, urologists, nurses, or other physicians. Patients and clinicians identified several key decisional needs including an understanding of accuracy, uncertainty, radiation exposure/cancer risk, and clear return precautions. Patients and community members identified facilitators to SDM, such as a checklist of signs and symptoms. Many stakeholders, including both patients and ED clinicians, expressed a strong pro-CT bias. A six-page DA was developed, iteratively refined, and beta-tested.Conclusions: Using stakeholder engagement and qualitative inquiry, we developed an evidence-based DA to facilitate SDM around the question of CT scan utilization in patients with suspected uncomplicated ureterolithiasis. Future research will test the efficacy of the DA in facilitating SDM.

Dataset Information

The Development of Delta: Using Agile to Develop a Decision Aid for Pediatric Oncology Clinical Trial Enrollment.

Publications

The Development of Delta: Using Agile to Develop a Decision Aid for Pediatric Oncology Clinical Trial Enrollment.

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