Decision Aid Content Research Articles

To Reconstruct or Not to Reconstruct: Piloting a Vietnamese and Arabic Breast Reconstruction Decision Aid in Australia.

Currently, there are no resources to support culturally and linguistically diverse (CALD) women with breast cancer to make decisions about undergoing breast reconstruction (BR). This study evaluated the usability and acceptability of decision aids (DAs) for Vietnamese- and Arabic-speaking women. This two-phase qualitative recruited Vietnamese- (Phase 1) and Arabic-speaking (Phase 2) adult (age ≥ 18 years) women who were diagnosed with breast cancer and could read Vietnamese/Arabic. Women participated in either think-aloud telephone interviews (Phase 1) or semi-structured telephone interviews (Phase 2) and provided feedback on the DA. Interviews were audio-recorded, translated, and transcribed from Vietnamese/Arabic to English, and inductive thematic analysis was undertaken. Additionally, Arabic-speaking women completed the Preparation for Decision Making (PrepDM) scale in Round 2. Twenty-five women were recruited in two phases (Phase 1: Vietnamese-speaking women, n = 14; Phase 2: Arabic-speaking, n = 11). Three themes were developed in Phase 1: (1) DA content and reception; (2) linguistic attributes and cultural appropriateness; and (3) factors that improve the DAs' impact. Three themes were developed in Phase 2: (1) varying perceptions of DA content; (2) linguistic and cultural suitability of information; and (3) impact of DA on decision making. Women from both phases identified areas for improvement: minimising the use of medical terminology, considering the cultural taboos associated with the word 'breast', and addressing remaining information gaps. Both language DAs were generally perceived as acceptable and useful in providing information about BR options and prompting women's reflections about the suitability of BR as part of their treatment. The mean PrepDM score for Arabic-speaking women in Round 2 was 4.8/5 (SD = 0.3). Further work is needed to ensure that culturally adapted DAs take into account the myriad of information needs and health literacy levels. The key role of healthcare professionals in shared decision making among CALD populations should also be considered.

Improving sustainability of a patient decision aid for systemic treatment of metastatic colorectal cancer: A qualitative study

ObjectiveTo improve sustainability of a patient decision aid for systemic treatment of metastatic colorectal cancer, we evaluated real-world experiences and identified ways to optimize decision aid content and future implementation. MethodsSemi-structured interviews with patients and medical oncologists addressed two main subjects: user experience and decision aid content. Content analysis was applied. Fifteen experts discussed the results and devised improvements based on experience and literature review. ResultsThirteen users were interviewed. They confirmed the relevance of the decision aid for shared decision making. Areas for improvement of content concerned; 1) outdated and missing information, 2) an imbalance in presentation of treatment benefits and harms, and 3) medical oncologists' expressed preference for a more center-specific or patient individualized decision aid, presenting a selection of the guideline recommended treatment options. Key points for improvement of implementation were better alignment within the care pathway, and clear instruction to users. ConclusionWe identified relevant opportunities for improvement of an existing decision aid and developed an updated version and accompanying implementation strategy accordingly. InnovationThis paper outlines an approach for continued decision aid and implementation strategy development which will add to sustainability. Implementation success of the improved decision aid is currently being studied in a multi-center mixed-methods implementation study.

“You just have to be careful how you do it”: A qualitative study of the Healthwise decision aid for older drivers

Objective Decisions about driving retirement are difficult for older adults, their families, and health care providers. A large randomized trial found that an existing online Healthwise decision aid decreased decision conflict and increased knowledge about driving decisions. This study sought to discover how, when, and where the tool might be most effective for older drivers, their family members, and their health care providers. Methods We used one-on-one, semistructured interviews (June–December 2023) to explore perspectives on the content of the Healthwise online driving decision aid and its potential use. Participants were health care providers or subject matter experts in older driver research or policy. Transcribed interviews were coded and analyzed with a team-based approach to identify emerging themes. Results Across interviews (16 health care providers; 15 experts), emerging themes related to considerations (barriers, benefits, and settings for use) that were (1) individual or interpersonal or (2) institutional or cultural, as well as feedback on (3) decision aid content and structure. Findings included concerns over agism and damaging provider–patient relationships, along with identified benefits of integrating tools into electronic health records and a need for consolidated, easy-to-access resources for both providers and patients. Conclusion Attention to individual, interpersonal, institutional, and cultural factors may enhance the use and dissemination of an online decision aid about driving, as well as its effectiveness in decision making. Future work should include views of additional stakeholders and studies on implementation of decision aids into real-world settings.

P080 Supporting shared decision-making about osteoporosis medicines: Combining multiple methods to develop the prototype iFraP intervention

Abstract Background/Aims Shared decision-making (SDM) is a joint process in which a person and healthcare professional work together to reach decisions about care. The iFraP (Improving uptake of Fracture Prevention drug treatments) intervention comprises computerised decision aid (DA), Fracture Liaison Service (FLS) clinician training package, and information resources to support SDM about osteoporosis medicines. This abstract details our multi-method approach to develop this intervention. Methods Intervention development was underpinned by the Medical Research Council guidelines for development of complex interventions. Four studies guided intervention prototype development, including (1) an evidence synthesis of existing osteoporosis DAs to examine quality and effectiveness; (2) a review of patient information about osteoporosis to evaluate quality and optimal language for talking about osteoporosis; (3) a Delphi consensus survey with patients, carers, and health professionals to gain consensus on intervention content, informed by an evidence review of relevant clinical guidelines and behavioural theories; (4) and focus groups and interviews with patients recently attending FLS, FLS clinicians and general practitioners (GPs) to explore current FLS practice, and barriers and facilitators to change. Expert stakeholders and public contributors informed each sub-study. Results Studies one and two informed design of the iFraP computerised DA. Evidence reviews of existing osteoporosis DAs and patient information found that they did not meet patient needs and identified poor readability, variable quality, and unbalanced and confusing content. Public contributors preferred DAs which were individualised, and together with expert stakeholders, supported the development of understandable explanations of osteoporosis and osteoporosis medicines to include in iFraP resources. Study three identified essential components of the FLS consultation which directly informed DA content. Study four identified the need for complementary iFraP information resources, training, and potential barriers to iFraP DA use. Patients expressed that they did not feel adequately prepared for their FLS consultation, leading to the development of an enhanced leaflet to accompany their FLS appointment letter. Patients, FLS clinicians, and GPs all expressed the need for a patient-friendly individualised summary of the FLS consultation, to facilitate consistent information across services and reinforce FLS messaging. This finding informed development of the iFraP Bone Health Record, an individualised, easy-read PDF print-out of the iFraP DA. FLS clinicians identified training needs relating to communicating risk, involving patients in decisions and clinical decision-making. Barriers to use included concerns that the DA would increase consultation duration, and that SDM may undermine their goal to facilitate medicine adherence. Identified barriers to use and training needs informed the content and delivery of the interactive eLearning and role play session, with consideration of theoretically-informed behaviour change techniques. Conclusion The iFraP complex intervention development work demonstrates the use of multiple methods to develop an evidence-based and theoretically-driven intervention in-preparation for testing. Disclosure L. Bullock: None. J. Fleming: None. E.M. Clark: None. S. Leyland: None. S. Thomas: Grants/research support; ST owns Prescribing Decision Support Ltd that developed the iFraP decision aid. C. Gidlow: None. T.W. O'Neill: Grants/research support; TON is supported by the NIHR Manchester Biomedical Research Centre. C.P. Iglesias-Urrutia: None. A. Hawarden: Grants/research support; AH is funded by a Versus Arthritis Clinical Research Fellowship (reference 22726). F. Manning: None. J. Protheroe: None. J. Lefroy: None. S. Ryan: None. R. Horne: None. C.D. Mallen: Grants/research support; CM is funded by the NIHR Applied Research Collaboration West Midlands and the NIHR School for Primary Care Research. C. Jinks: Grants/research support; CJ is part funded by NIHR Applied Research Collaboration (ARC) West Midlands. Z. Paskins: Consultancies; ZP has received consultancy fees from UCB Pharma. Grants/research support; ZP is funded by the National Institute for Health Research (NIHR) [Clinician Scientist Award (CS-2018-18-ST2-010)/NIHR Academy].

Evaluation and Modification of a Shared Decision-Making Tool for Peanut Allergy Management.

Based on shared decision-making (SDM) principles, a decision aid was previously developed to help patients, their caregivers, and physicians decide which peanut allergy management approach best suits them. This study refined the decision aid's content to better reflect patients' and caregivers' lived experience. Current standard of care for peanut allergy is avoidance, although peanut oral immunotherapy has been approved by the Food and Drug Administration for use in patients 4-17 years old. An advisory board of allergy therapy experts (n = 3) and patient advocates (n = 3) informed modifications to the decision aid. The revised tool underwent cognitive debriefing interviews (CDIs) among adolescents (12-17 years old) with peanut allergy and caregivers of patients 4-17 years old with peanut allergy to evaluate its relevance, understandability, and usefulness. The 20 CDI participants understood the information presented in the SDM tool and reported it was important and relevant. Some revisions were made based on participant feedback. Results support content validity of the Peanut Allergy Treatment SDM Tool.

Lessons Learned From Shared Decision-Making With Oral Anticoagulants: Viewpoint on Suggestions for the Development of Oral Chemotherapy Decision Aids.

Oral chemotherapy is commonly prescribed, and by using decision aids (DAs), clinicians can facilitate shared decision-making (SDM) to align treatment choices with patient goals and values. Although products exist commercially, little evidence informs the development of DAs targeting the unique challenges of oral chemotherapy. To address this gap in the literature, our objective was to review DAs developed for oral anticoagulation, DA use in oncology, and patient preference surveys to guide the development of DAs for oral chemotherapy. We focused on reviewing SDM, patient preferences, and specifically the development, efficacy, and patient experience of DAs in oral anticoagulation and oncologic conditions, ultimately including conclusions and data from 30 peer-reviewed publications in our viewpoint paper. We found that effective DAs in oral anticoagulation improved knowledge, lowered decisional conflict, increased adherence, and covered a broad range of SDM elements; however, limited information on patient experience was a common shortcoming. In oncology, DAs increased knowledge and aligned decisions with the values of the patients. Ineffective oncology DAs provided general, unclear, or overly optimistic information, while providing "too much" information was not shown to do harm. Patients preferred DAs that included pros and cons, side effects, questions to ask, and expected quality of life changes. In developing DAs for oral chemotherapy, patients should be included in the development process, and DA content should be specifically tailored to patient preferences. Providing DAs ahead of appointments proved more effective than during, and additional considerations included addressing barriers to efficacy. There is a need for evidence-based DAs to facilitate SDM for patients considering oral chemotherapy. Developers should use data from studies in oral anticoagulation, oncology, and preference surveys to optimize SDM.

Patient and clinician perspectives on implant dentistry decision aid content: Results from an enhanced Delphi study.

To investigate patient and clinician perspectives on what is considered important to include in a decision aid for replacement of a missing tooth with an implant. An online modified Delphi method with pair comparisons technique was used to survey participants (66 patients, 48 prosthodontists, 46 periodontists, and 31 oral surgeons) in Ontario, Canada from November 2020 to April 2021 regarding the importance of information provided during an implant consultation. Round one included 19 items derived from the literature and informed consent protocols. The decision to retain an item was based on group consensus, defined as at least 75% of participants identifying the item as "important" or "highly important." After analysis of round one results, a second-round survey was sent to all participants to rank the relative importance of the consensus items. Statistical testing was completed using the Kruskal-Wallis one-way analysis of variance test and post hoc Mann-Whitney U tests with a significance level set at p≤0.05. The first and second surveys had response rates of 77.0% and 45.6%, respectively. In round one, all items except purpose of steps reached group consensus. In round two, the highest group ranked items were patient responsibilities for treatment success and follow-ups after treatment. The lowest group ranked items were cost factors and restorative steps. Significant differences between the stakeholder groups were found on several items, including diagnosis (p≤0.00), non-implant options (p≤0.00), and cost (p≤0.01). In general, patients' opinions were significantly different than clinicians' opinions on the relative importance of items. Clinicians and patients feel that multiple items are important to include in a decision aid for implant therapy; however, differences exist between patients and clinicians on the relative importance of items.

Improving Initial Medication Adherence to cardiovascular disease and diabetes treatments in primary care: Pilot trial of a complex intervention.

The Initial Medication Adherence (IMA) intervention is a multidisciplinary and shared decision-making intervention to improve initial medication adherence addressed to patients in need of new treatments for cardiovascular diseases and diabetes in primary care (PC). This pilot study aims to evaluate the feasibility and acceptability of the IMA intervention and the feasibility of a cluster-RCT to assess the effectiveness and cost-effectiveness of the intervention. A 3-month pilot trial with an embedded process evaluation was conducted in five PC centers in Catalonia (Spain). Electronic health data were descriptively analyzed to test the availability and quality of records of the trial outcomes (initiation, implementation, clinical parameters and use of services). Recruitment and retention rates of professionals were analyzed. Twenty-nine semi-structured interviews with professionals (general practitioners, nurses, and community pharmacists) and patients were conducted to assess the feasibility and acceptability of the intervention. Three discussion groups with a total of fifteen patients were performed to review and redesign the intervention decision aids. Qualitative data were thematically analyzed. A total of 901 new treatments were prescribed to 604 patients. The proportion of missing data in the electronic health records was up to 30% for use of services and around 70% for clinical parameters 5 months before and after a new prescription. Primary and secondary outcomes were within plausible ranges and outliers were barely detected. The IMA intervention and its implementation strategy were considered feasible and acceptable by pilot-study participants. Low recruitment and retention rates, understanding of shared decision-making by professionals, and format and content of decision aids were the main barriers to the feasibility of the IMA intervention. Involving patients in the decision-making process is crucial to achieving better clinical outcomes. The IMA intervention is feasible and showed good acceptability among professionals and patients. However, we identified barriers and facilitators to implementing the intervention and adapting it to a context affected by the COVID-19 pandemic that should be considered before launching a cluster-RCT. This pilot study identified opportunities for refining the intervention and improving the design of the definitive cluster-RCT to evaluate its effectiveness and cost-effectiveness. ClinicalTrials.gov, identifier NCT05094986.

Shared Decision-Making: Process for Design and Implementation of a Decision Aid for Patients With Craniosynostosis.

To describe the process of developing a craniosynostosis decision aid. We conducted a mixed-methods exploratory study between August 2019 and March 2020 to develop a decision aid about surgical treatment for single suture craniosynostosis. A single tertiary care academic children’s hospital. The decision aid development team consisted of surgeons, research fellows, a clinical nurse practitioner, clinical researchers with expertise in decision science, and a university-affiliated design school. Qualitative interviews (N = 5) were performed with families, clinicians (N = 2), and a helmeting orthotist to provide feedback on decision aid content, format, and usability. After cycles of revisions and iterations, 3 related decision aids were designed and approved by the marketing arm of our institution. Distinct booklets were created to enable focused discussion of treatment options for the 3 major types of single suture craniosynostosis (sagittal, metopic, unicoronal). Three decision aids representing the 3 most common forms of single suture craniosynostosis were developed. Clinicians found the decision aids could help facilitate discussions about families’ treatment preferences, goals, and concerns. We developed a customizable decision aid for single suture craniosynostosis treatment options. This tool lays the foundation for shared decision-making by assessing family preferences and providing clear, concise, and credible information regarding surgical treatment. Future research can evaluate this tool’s impact on patient–clinician discussions about families’ goals and preferences for treatment.

'Replace uncertainty with information': shared decision-making and decision quality surrounding catheter ablation for atrial fibrillation.

As a first step in developing a decision aid to support shared decision-making (SDM) for patients with atrial fibrillation (AF) to evaluate treatment options for rhythm and symptom control, we aimed to measure decision quality and describe decision-making processes among patients and clinicians involved in decision-making around catheter ablation for AF. We conducted a cross-sectional, mixed-methods study guided by an SDM model outlining decision antecedents, processes, and outcomes. Patients and clinicians completed semi-structured interviews about decision-making around ablation, feelings of decision conflict and regret, and preferences for the content, delivery, and format of a hypothetical decision aid for ablation. Patients also completed surveys about AF symptoms and aspects of decision quality. Fifteen patients (mean age 71.1 ± 8.6 years; 27% female) and five clinicians were recruited. For most patients, decisional conflict and regret were low, but they also reported low levels of information and agency in the decision-making process. Most clinicians report routinely providing patients with information and encouraging engagement during consultations. Patients reported preferences for an interactive, web-based decision aid that clearly presents evidence regarding outcomes using data, visualizations, videos, and personalized risk assessments, and is available in multiple languages. Disconnects between clinician efforts to provide information and bolster agency and patient experiences of decision-making suggest decision aids may be needed to improve decision quality in practice. Reported experiences with current decision-making practices and preferences for decision aid content, format, and delivery can support the user-centred design and development of a decision aid.

Development of a web-based, patient-centered decision aid for oropharyngeal cancer treatment

ObjectivesMany patients diagnosed with oropharyngeal squamous cell carcinoma (OPSCC) have the option of radiation- or surgery-based therapy, and would benefit from a treatment decision aid (DA) to make decisions congruent with their personal values. Our objective was to develop a patient-centered DA for patients with OPSCC that is comprehensible, usable, acceptable, and well-designed. Materials and MethodsDecisional needs from a pilot study of OPSCC survivors and treating physicians were used to inform a web-based prototype DA. A multidisciplinary steering group developed and iteratively revised the DA. Feasibility testing was conducted in two cycles to assess perspectives of stakeholders (medical, radiation and surgical oncologists, patient education experts, and OPSCC survivors). Survey data and open-ended responses were used to evaluate and refine the DA. Results16 physicians, 4 patient education experts, and 6 survivors of OPSCC evaluated a web-based DA prototype in two cycles of testing. Participant feedback was used to revise the DA content and design between cycles. The majority of participants across both cycles indicated that the DA was comprehensible (97%), usable (86%), acceptable (78%), and well-designed (93%). Approximately three quarters of respondents indicated that they would use or share the DA in clinical practice. ConclusionWe developed the first patient-centered treatment decision aid (DA) designed for patients with OPSCC, to our knowledge. The DA was perceived favorably by stakeholders, with more than three quarters of respondents indicating they would use it in clinical practice. This tool may improve clinical practice as an adjunct to shared decision-making for OPSCC.

Decision aids for breast cancer screening in women approximately 50 years of age: A systematic review and meta-analysis of randomised controlled trials.

Review the content, quality and effect of breast cancer screening decision aids (BCS-DAs) in women approximately 50 years of age to provide a basis for the development of DAs. Breast cancer screening (BCS) decisions are complex and should vary depending on a woman's risk of breast cancer and her values and preferences. Decision aids (DAs) can help support women and medical staff in shared decision-making (SDM) when solving BCS problems. Systematic review and meta-analysis. Four databases were searched starting at the time of establishment of the database to March 2021. The PRISMA checklist was followed. The meta-analysis was carried out using Review Manager 5.3software. The quality of the studies was assessed using the risk of bias tool recommended by the Cochrane Handbook. The quality of the DAs was assessed using the International Standards for Decision Aid (IPDASi v4.0). The search strategy obtained 2024 references. After abstraction and full text screening, a total of seven studies were included. This article systematically reviews the content, quality and effectiveness of DAs in seven RCTs in helping women to make BCS decisions. The DAs were mostly in paper or online form and displayed disease screening information, analysed the benefits and harms of options and clarified the value to patients. Among all the DAs, only one met the minimum quality standards of IPDASi v4.0. Comprehensive analysis shows that DAs can significantly improve knowledge and increase the proportion of women who make informed choices, but they have no effect on screening attitude, intention, decision conflict or regret. In the future, nurses should be encouraged to develop DAs in accordance with strict standards and to make them applicable to young women of different backgrounds. The result may be provide a basis for the development of DAs to promote women's informed screening choices.

Effects by educational attainment of a mammography screening patient decision aid for women aged 75 years and older.

To help inform screening decisions, a mammography screening decision aid (DA) for women aged 75years and older was tested in a cluster randomized clinical trial of 546 women. DA use increased women's knowledge of the benefits and harms of mammography and lowered screening rates. In the current study, the objective was to examine whether participants' views of the DA and/or its effects differed by educational attainment. A secondary analysis was conducted of 283 women who received the DA before a personal care provider (PCP) visit during the trial to examine the acceptability of the DA and its effects on knowledge of the benefits and harms of mammography, screening intentions, and receipt of screening by educational attainment. Adjusted analyses accounted for clustering by PCP. Of the 283 participants, 43% had a college education or less. Regardless of educational attainment, 87.2% found the DA helpful. Women with lower educational attainment were less likely to understand all of the DA's content (46.3% vs 67.5%; P<.001), had less knowledge of the benefits and harms of mammography (adjusted mean±standard error knowledge score, 7.1±0.3 vs 8.1±0.3; P<.001), and were less likely to lower screening intentions (adjusted percentage, 11.4% vs 19.4%; P=.01). Receipt of screening did not differ by educational attainment. A mammography DA for women aged 75years and older was helpful to women regardless of their educational attainment; however, those with a college degree or greater understood the DA and, possibly as a result, lowered their screening intentions. Future studies need to examine how to better support informed decision making around mammography screening in older women with lower educational attainment. The authors examined data from a previous study to learn the effects of a mammography decision aid (DA) for women aged 75years and older according to their level of education. Overall, women found the DA helpful, but women with lower educational attainment found it harder to understand the benefits and harms of mammography screening and were less likely to lower their screening intentions than women with a college degree. The findings suggest that women aged 75years and older who have lower educational attainment may need an even lower literacy DA and/or more support from health care professionals.

Using Mixed Methods With Multiple Stakeholders to Inform Development of a Breast Cancer Screening Decision Aid for Women With Limited Health Literacy.

Background. When stakeholders offer divergent input, it can be unclear how to prioritize information for decision aids (DAs) on mammography screening. Objectives. This analysis triangulates perspectives (breast cancer screening experts, primary care providers [PCPs], and patients with limited health literacy [LHL]) to understand areas of divergent and convergent input across stakeholder groups in developing a breast cancer screening DA for younger women with LHL. Design. A modified online Delphi panel of 8 experts rated 57 statements for inclusion in a breast cancer screening DA over three rounds. Individual interviews with 25 patients with LHL and 20 PCPs from a large safety net hospital explored informational needs about mammography decision making. Codes from the qualitative interviews and open-ended responses from the Delphi process were mapped across stakeholders to ascertain areas where stakeholder preferences converged or diverged. Results. Four themes regarding informational needs were identified regarding 1) the benefits and harms of screening, 2) different screening modalities, 3) the experience of mammography, and 4) communication about breast cancer risk. Patients viewed pain as the primary harm, while PCPs and experts emphasized the harm of false positives. Patients, but not PCPs or experts, felt that information about the process of getting a mammogram was important. PCPs believed that mammography was the only evidence-based screening modality, while patients believed breast self-exam was also important for screening. All stakeholders described incorporating personal risk information as important. Limitations. As participants came from one hospital, perceptions may reflect local practices. The Delphi sample size was small. Conclusions. Patients, experts, and PCPs had divergent views on the most important information needed for screening decisions. More evidence is needed to guide integration of multiple stakeholder perspectives into the content of DAs. Article HighlightsThis study combines data from patients with limited health literacy, primary care providers (PCPs), and experts to examine priorities for information inclusion in a breast cancer screening decision aid.All stakeholders described including personal risk information as important.While experts and PCPs prioritized providing evidence-based screening options only, emphasized false positives as the primary mammography harm, and downplayed the relevance of delivering mammography process information, patients had a broader scope of harms (e.g., pain), wanted more information on breast self- exam, and viewed process information as fundamental to their decision making.This study demonstrates that there are differences in what doctors and experts prioritize communicating about breast cancer screening and what patients want to learn about.

Citizen advisory groups for the creation and improvement of decision aids: experience from two Swiss centers for primary care

BackgroundGuidelines for patient decision aids (DA) recommend target population involvement throughout the development process, but developers may struggle because of limited resources. We sought to develop a feasible means of getting repeated feedback from users.MethodsBetween 2017 and 2020, two Swiss centers for primary care (Lausanne and Bern) created citizen advisory groups to contribute to multiple improvement cycles for colorectal, prostate and lung cancer screening DAs. Following Community Based Participatory Research principles, we collaborated with local organizations to recruit citizens aged 50 to 75 without previous cancer diagnoses. We remunerated incidental costs and participant time. One center supplemented in-person meetings by mailed paper questionnaires, while the other supplemented meetings using small-group workshops and analyses of meeting transcripts.ResultsIn Lausanne, we received input from 49 participants for three DAs between 2017 and 2020. For each topic, participants gave feedback on the initial draft and 2 subsequent versions during in-person meetings with ~ 8 participants and one round of mailed questionnaires. In Bern, 10 participants were recruited among standardized patients from the university, all of whom attended in-person meetings every three months between 2017 and 2020. At both sites, numerous changes were made to the content, appearance, language, and tone of DAs and outreach materials. Participants reported high levels of satisfaction with the participative process.ConclusionsCitizen advisory groups are a feasible means of repeatedly incorporating end-user feedback during the creation of multiple DAs. Methodological differences between the two centers underline the need for a flexible model adapted to local needs.

Developing a Decision Aid to Facilitate Informed Decision Making About Invasive Mechanical Ventilation and Lung Transplantation Among Adults With Cystic Fibrosis: Usability Testing.

BackgroundCystic fibrosis (CF) is a life-limiting genetic disease that causes chronic lung infections. We developed an internet-based decision aid (DA) to help patients with CF make better informed decisions regarding treatments and advance care planning. We built the DA around two major treatment decisions: whether to have a lung transplant and whether to agree to invasive mechanical ventilation (intubation).ObjectiveThis study aims to conduct usability testing of the InformedChoices CF DA among key stakeholder groups.MethodsWe performed a patient needs assessment using think-aloud usability testing with patients with CF, their surrogates, and CF clinicians. Think-aloud participants provided feedback while navigating the DA, and after viewing, they answered surveys. Transcripts from the think-aloud sessions and survey results were categorized into common, generalizable themes and optimizations for improving content, comprehension, and navigation. We assessed the ease of use of the DA (System Usability Scale) and also assessed the participants’ perceptions regarding the overall tone, with an emphasis on emotional reactions to the DA content, level of detail, and usefulness of the information for making decisions about either intubation or lung transplantation, including how well they understood the information and were able to apply it to their own decision-making process. We also assessed the DA’s ease of navigation, esthetics, and whether participants were able to complete a series of usability tasks (eg, locating specific information in the DA or using the interactive survival estimates calculator) to ensure that the website was easy to navigate during the clinic-based advance care planning discussions.ResultsA total of 12 participants from 3 sites were enrolled from March 9 to August 30, 2018, for the usability testing: 5 CF clinicians (mean age 48.2, SD 12.0 years), 5 adults with CF, and 2 family and surrogate caregivers of people with CF (mean age of CF adults and family and surrogate caregivers 38.8, SD 10.8 years). Among the 12 participants, the average System Usability Scale score for the DA was 88.33 (excellent). Think-aloud analysis identified 3 themes: functionality, visibility and navigation, and content and usefulness. Areas for improvement included reducing repetition, enhancing comprehension, and changing the flow. Several changes to improve the content and usefulness of the DA were recommended, including adding information about alternatives to childbearing, such as adoption and surrogacy. On the basis of survey responses, we found that the navigation of the site was easy for clinicians, patients, and surrogates who participated in usability testing.ConclusionsUsability testing revealed areas of potential improvement. Testing also yielded positive feedback, suggesting the DA’s future success. Integrating changes before implementation should improve the DA’s comprehension, navigation, and usefulness and lead to greater adoption.

Adapting a Traumatic Brain Injury Goals-of-Care Decision Aid for Critically Ill Patients to Intracerebral Hemorrhage and Hemispheric Acute Ischemic Stroke.

Families in the neurologic ICU urgently request goals-of-care decision support and shared decision-making tools. We recently developed a goals-of-care decision aid for surrogates of critically ill traumatic brain injury patients using a systematic development process adherent to the International Patient Decision Aid Standards. To widen its applicability, we adapted this decision aid to critically ill patients with intracerebral hemorrhage and large hemispheric acute ischemic stroke. Prospective observational study. Two academic neurologic ICUs. Twenty family members of patients in the neurologic ICU were recruited from July 2018 to October 2018. None. We reviewed the existing critically ill traumatic brain injury patients decision aid for content and changed: 1) the essential background information, 2) disease-specific terminology to "hemorrhagic stroke" and "ischemic stroke", and 3) disease-specific prognosis tailored to individual patients. We conducted acceptability and usability testing using validated scales. All three decision aids contain information from validated, disease-specific outcome prediction models, as recommended by international decision aid standards, including careful emphasis on their uncertainty. We replaced the individualizable icon arrays graphically depicting probabilities of a traumatic brain injury patient's prognosis with icon arrays visualizing intracerebral hemorrhage and hemispheric acute ischemic stroke prognostic probabilities using high-quality disease-specific data. We selected the Intracerebral Hemorrhage Score with validated 12-month outcomes, and for hemispheric acute ischemic stroke, the 12-month outcomes from landmark hemicraniectomy trials. Twenty family members participated in acceptability and usability testing (n = 11 for the intracerebral hemorrhage decision aid; n = 9 for the acute ischemic stroke decision aid). Median usage time was 22 minutes (interquartile range, 16-26 min). Usability was excellent (median System Usability Scale = 84/100 [interquartile range, 61-93; with > 68 indicating good usability]); 89% of participants graded the decision aid content as good or excellent, and greater than or equal to 90% rated it favorably for information amount, balance, and comprehensibility. We successfully adapted goals-of-care decision aids for use in surrogates of critically ill patients with intracerebral hemorrhage and hemispheric acute ischemic stroke and found excellent usability and acceptability. A feasibility trial using these decision aids is currently ongoing to further validate their acceptability and test their feasibility for use in busy neurologic ICUs.

Factors Influencing Pregnant Women's Use of Patient Decision Aids and Decision Making on Prenatal Screening: A Qualitative Study.

Objective: We aimed to identify factors influencing pregnant women’s use of patient decision aids (PtDA) and decision making on prenatal screening. Materials and methods: This qualitative study was conducted between July 2019 and June 2020 in Tehran, Iran. The sample included 26 pregnant women selected by purposive sampling. The participants used a prenatal screening PtDA, then interviewed about factors that would influence their decision making and use of decision aids. The data were analyzed by conventional content analysis. Results: Three categories were identified for the process of and factors influencing decision making, including the current decision making process, expected decision making process, and factors influencing decision making. Also, five categories were identified as factors affecting the use of PtDAs, including the content of decision aids, the appearance of decision aids, the decision aid platform, the provision of decision aids, and the sub features of decision aids. Conclusion: To design, develop, and implementation of PtDAs for pregnant women, one should identify the factors affecting pregnant women’s decision making and the use of decision aids. This study helped to the identification of these factors, which is the first step towards the use of PtDAs by pregnant women and their participation in decision making.

Abstract PO-017: Using a Delphi panel to establish content for a breast cancer screening decision aid inclusive of women with limited health literacy

Abstract Breast cancer screening decision aids that help women understand their risk for cancer and available screening options can improve the quality of decision-making for women in their 40s, but existing decision aids do not address the needs of women with limited health literacy. We conducted a Delphi panel among breast cancer screening and decision science experts to determine content for a breast cancer screening decision aid for women ages 40-54 who have limited health literacy. Experts were those with an advanced degree (MD, PhD), at least 3 years of experience, and content expertise in breast cancer screening, health literacy, or decision aid design. Experts were invited via email to participate in an online Delphi panel, which aimed to establish consensus on decision aid content, guided by the International Patient Decision Aid Standards. Experts rated the importance of each item on a scale from 1 (not important) to 9 (very important), as well as how strong they felt the evidence was to support each. Open-ended responses explaining ratings were gathered, and in Round 1 experts were asked to nominate new items for inclusion. Following RAND methods, the 30th - 70th percentile range, central point, and asymmetry index were calculated for each item. From these values, a disagreement index was determined, and if the value was &amp;gt;1, indicating disagreement, the item was moved to the next round. Otherwise, consensus was established, and the item was omitted from future rounds. Between rounds, experts received a summary of their rating for each item relative to others, along with a summary of the open-ended explanations. The process was repeated for Rounds 2 and 3. 15 experts were invited, 9 agreed and 8 completed Round 1. All eight participants were female, with an average age of 53. Seven were white and 2 Asian. Five held medical doctorate degrees, 3 had PhDs. Seven experts completed all 3 rounds. Round 1 included 55 items, 30 of which obtained consensus (disagreement index &amp;lt; 1). 29 items were reviewed in Round 2 (25 from Round 1, plus 4 newly nominated items), 15 of which obtained consensus, leaving a final round of 14 items. In Round 3, 1 item achieved consensus, 4 items converged around uncertainty, and 9 did not reach consensus. Experts disagreed or were uncertain on the importance of including breast cancer risk factors and whether a description of the multiple screening modalities available should be included. Explanations for these items described balancing an ethical imperative to provide information and avoid paternalism while limiting information extraneous to the decision. While guidelines suggest that the age of initiating mammography and modalities used should involve an assessment of risk of developing breast cancer, experts did not agree about the inclusion of risk factor or modality information in a breast cancer screening decision aid for women with limited health literacy. Balancing detail with simplicity remains a challenge in determining content for decision support tools that seek to include a range of literacy levels. Citation Format: Christine M. Gunn, Tracy A. Battaglia, Michael K. Paasche-Orlow, Mara Schonberg, Ariel Maschke, Nancy R. Kressin. Using a Delphi panel to establish content for a breast cancer screening decision aid inclusive of women with limited health literacy [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PO-017.

Implementation of Shared Decision-Making in Clinical Practice in Rheumatology.

Implementation of Shared Decision-Making in Clinical Practice in Rheumatology.