International Patient Decision Aid Standards Research Articles

Shared decision making for patients with kidney failure to improve end-of-life care: Development of the DESIRE intervention.

To describe the development of a shared decision making intervention for planning end-of-life care for patients with kidney failure, their relatives and health professionals in kidney services. End-of-life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End-of-life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end-of-life conversations. Health professionals report needing more skills to raise the issue of end-of-life care options within consultations and patients want to be able to discuss issues important to them about future care plans. The development design was guided by the UK Medical Research Council's framework and a user-centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved. Areas considered significant to a shared decision making intervention were training of health professionals, conversations about end-of-life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations. An intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria. DESIRE is intended to support shared decision making about planning end-of-life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care. What problem did the study address? International guidelines recommend health professionals involve patients with kidney failure in making decisions about end-of-life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conversations about end-of-life care. What were the main findings? The study resulted in the development of a complex intervention, called DESIRE, about shared decision making and planning end-of-life care for patients with kidney failure, their relatives and health professionals in kidney services, including a training programme for health professionals, shared decision making conversations and a patient decision aid. Where and on whom will the research have an impact? The research contributes a shared decision making intervention to patients in the later stage of kidney failure, their relatives and health professionals. We believe that the DESIRE intervention could be introduced during consultations with health professionals at an earlier stage of the patient's illness trajectory, as well as being applied to other chronic diseases. This intervention development research is reported according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist and the DEVELOPTOOLS Reporting Checklist. Patients, relatives and health professionals have been involved throughout the research process as part of the research team and advisory board. For this study, the advisory board has particularly contributed to the development process of the DESIRE intervention by actively participating in the four workshops, in the iterations between the workshops and in the preparation of the manuscript.

The development and validation of a decision aid to enhance shared decision‐making for the management of actinic keratosis

AbstractActinic keratoses (AKs) are common pre‐malignant lesions. There are numerous management options including active surveillance, multiple topical therapies, cryotherapy, curettage and cautery, and photodynamic therapy, each with their own risks, benefits and efficacy. Best practice currently involves shared decision‐making between patient and clinician, particularly in the setting of multiple management options. Patient decision aids have been shown to be beneficial in the shared decision‐making process. In view of this, we have developed and validated a decision aid for the management of AKs, in concordance with the International Patient Decision Aids Standards.

Creation of a Shared Medical Decision Support Tool for the Management of Abdominal Aortic Aneurysms

ObjectivePatients with an unruptured abdominal aortic aneurysm (AAA) at the surgical threshold may benefit from aneurysmal exclusion either by open surgery or endovascular repair. A patient decision aid (PtDA) could be useful to help patients and their surgeons choose between the two techniques. The aim of this study was to develop a shared medical decision support tool, in french language, for the surgical treatment of AAA. MethodsFollowing the steps recommended by the International Patient Decision Aids Standards, we carried out a qualitative study using semi-structured interviews with patients and vascular surgeons and focus group with patients to identify their main points of interest. After analyzing the interviews using grounded theory with independent double coding, the verbatims were discussed at a steering committee, at the end of which a prototype of the tool was created. Results4 surgeons and 14 patients were interviewed. No new codes emerged from the last two interviews. At the end of the steering committee meeting, the informations selected for inclusion in the PtDA tool were the definition of an AAA, a description of the two surgical techniques (approach, duration of operation), the main complications, the peri-operative mortality rate, and post operative follow-up (length of hospital stay, monitoring frequency, risk of re-intervention). It had to be produced on a synthetic paper format, with six illustrations and a simple vocabulary. ConclusionWe developed a PtDA tool for use in a sharing decision making process with the patient during the consultation with the vascular surgeon and the general practitioner. Further studies are needed to validate the tool and to test it in clinical practice.

Improving shared decision making for lung cancer treatment by developing and validating an open-source web based patient decision aid for stage I-II non-small cell lung cancer.

The aim of this study was to develop and evaluate a proof-of-concept open-source individualized Patient Decision Aid (iPDA) with a group of patients, physicians, and computer scientists. The iPDA was developed based on the International Patient Decision Aid Standards (IPDAS). A previously published questionnaire was adapted and used to test the user-friendliness and content of the iPDA. The questionnaire contained 40 multiple-choice questions, and answers were given on a 5-point Likert Scale (1-5) ranging from "strongly disagree" to "strongly agree." In addition to the questionnaire, semi-structured interviews were conducted with patients. We performed a descriptive analysis of the responses. The iPDA was evaluated by 28 computer scientists, 21 physicians, and 13 patients. The results demonstrate that the iPDA was found valuable by 92% (patients), 96% (computer scientists), and 86% (physicians), while the treatment information was judged useful by 92%, 96%, and 95%, respectively. Additionally, the tool was thought to be motivating for patients to actively engage in their treatment by 92%, 93%, and 91% of the above respondents groups. More multimedia components and less text were suggested by the respondents as ways to improve the tool and user interface. In conclusion, we successfully developed and tested an iPDA for patients with stage I-II Non-Small Cell Lung Cancer (NSCLC).

Development of The Lupus Clinical Trials Enrollment Decision Aid: a pilot study

IntroductionIn this pilot study, we describe the development of a patient-centered Decision Aid (DA) for participation of SLE clinical trials called “The Lupus Clinical Trials Enrollment DA”.MethodsA draft DA was designed by a development working group using a collaborative, iterative process using the International Patient Decision Aid Standards (IPDAS) guidelines. The approved draft DA was then pilot tested and refined using semi structured interview with 10 lupus providers and 12 SLE patients. Descriptive statistics were calculated. Interviews/surveys were conducted until thematic saturation was achieved. Responses on usefulness were accumulated, and mean usefulness scores were calculated. Feedback from the semi-structured interviews were categorized into several themes as outlined in the results section.ResultsThe definition of treatments, side effects of each option, and expected improvement from each option was outlined. 90% of providers and 91.7% of patients reported that the definition of SOC treatment was clear. Additionally, the expected improvement for SOC (90% of providers, 100% of patients), clinical trial drug (70%, 91.6%), and placebo (70%, 100%) were noted to be clear. Side effects of SOC (80%, 100%), clinical trial drug treatment (80%, 100%), placebo (90%, 100%), were also noted to be clear. 100% of providers and patients thought that the figure outlining pros/cons of participating in clinical trials was appropriate. The mean usefulness scores for the DA were 4.45/5 for providers and 4.67/5 for patients.DiscussionThese data demonstrate that both patients and providers confirm that the newly developed The Lupus Clinical Trials Enrollment DA is useful and easy to use. Qualitative feedback from providers demonstrated concern that aspects of the DA, such as expected improvement and side effects might be unclear to patients; however, patients did not express the same concern in either the quantitative or qualitative feedback.

Development and alpha testing of a patient shared decision aid for prosthesis design for new lower limb prosthesis users.

After lower limb amputation, several prosthesis design options exist. However, prosthesis design decisions do not always reflect a prosthesis user's needs, values, and preferences. To develop a patient decision aid (PDA) prototype for prosthetists and new prosthesis users facing prosthesis design decisions after lower limb amputation, and to assess its usability, accuracy, and comprehensibility. Exploratory mixed methods. PDA development was informed by a qualitative needs assessment and guided by the International Patient Decision Aid Standards. The PDA was evaluated by steering groups of experienced prosthesis users and prosthetic professionals (prosthetists and researchers) to test usability, accuracy, and comprehensibility through focus groups, individual interviews, and rating on a Likert scale ranging from 1 to 10. The resulting PDA included 6 sections: (1) Amputation and Early Recovery, (2) Communication, (3) Values, (4) Prosthesis Design, (5) Preferences, and (6) Prosthetic Journey. Usability, accuracy, and comprehensibility were rated as 9.2, 9.6, and 9.6, respectively, by prosthetic professionals, and 9.4, 9.6, and 9.6, respectively, by prosthesis users. The PDA incorporated guidance by relevant stakeholders and was rated favorably, emphasizing a need for shared decision-making support in prosthesis design. One challenge was determining the amount of information in the PDA, highlighting the diversity in end users' informational needs. Future iterations of the PDA should undergo beta testing in clinical settings. A standardized, iterative method was used to develop a PDA for new lower limb prosthesis users and prosthetists when considering prosthesis design decisions. The PDA was considered useable, accurate, and comprehensible.

The Development and Testing of a Patient Decision Aid for Individuals with Homologous Recombinant Proficient Ovarian Cancer Who Are Considering Niraparib Maintenance Therapy.

New treatments for ovarian cancer are available that require trade-offs between progression-free survival and quality of life. The aim of this study was to develop a decision aid for patients with homologous recombinant proficient (HRP) tumors, as the benefit-harm ratio of niraparib needs consideration. This decision aid was created with a systematic and iterative development process based on the Ottawa Decision Support Framework. The decision aid was user-tested for acceptability, usability, and comprehensibility using a survey completed by a sample of patients with ovarian cancer and oncologists. This decision aid follows the International Patient Decision Aids Standards (IPDAS) criteria in its development. User-test respondents (n = 13 patients; 13 physicians) reported that the decision aid used language that was easy to follow (69% patients; 85% physicians), was an appropriate length (69% patients; 62% physicians) and provided the right amount of information (54% patients; 54% physicians). Most respondents (92% patients; 62% physicians) would recommend this decision aid for HRP patients considering niraparib. This is the first decision aid for patients with HRP ovarian cancers who are considering niraparib maintenance therapy. It is available on-line and is being further evaluated in a pragmatic clinical trial in Saskatchewan.

Development of an Electronic Decision Aid Tool to Facilitate Mainstream Genetic Testing in Ovarian Cancer Patients.

Multigene panel testing is an important component of cancer treatment plans and risk assessment, but there are many different panel options and choosing the most appropriate panel can be challenging for health care providers and patients. Electronic tools have been proposed to help patients make informed decisions about which gene panel to choose by considering their preferences and priorities. An electronic decision aid (DA) tool was developed in line with the International Patient Decision Aids Standards collaboration. The multidisciplinary project team collaborated with an external health care communications agency and the MGH Cancer Center Patient and Family Advisory Council (PFAC) to develop the DA. Surveys of genetic counselors and patients were used to scope the content, and alpha testing was used to refine the design and content. Surveys of genetic counselors (n = 12) and patients (n = 228) identified common themes in discussing panel size and strategies for helping patients decide between panels and in identifying confusing terms for patients and distribution of patients' choices. The DA, organized into 2 major sections, provides educational text, graphics, and videos to guide patients through the decision-making process. Alpha testing feedback from the PFAC (n = 4), genetic counselors (n = 3) and a group of lay people (n = 8) identified areas to improve navigation, simplify wording, and improve layout. The DA developed in this study has the potential to facilitate informed decision-making by patients regarding cancer genetic testing. The distinctive feature of this DA is that it addresses the specific question of which multigene panel may be most suitable for the patient. Its acceptability and effectiveness will be evaluated in future studies.

A video-based decision aid improved knowledge and decreased decisional conflict for asymptomatic persistent endodontic lesions.

This prospective cohort study aimed to (i) evaluate patients' treatment decisions, decisional conflict and knowledge levels before and after use of a video-based decision aid (DA) on asymptomatic persistent endodontic lesions (APEL) and to (ii) elicit important decision factors for patients in the decision-making process. A video DA modelled after the International Patient Decision Aids Standards (IPDAS) was designed. The video was pilot-tested, revised and used on 50 patients referred to the graduate endodontic clinic and presenting with an incidental finding of APEL detected on radiographs, with informed consent (DSRB 2020/00133). Recruitment was conducted from June 2020 to November 2021. Patients' treatment decisions and decision-making process were studied. Patients also completed a questionnaire on knowledge gain, decisional conflict and confidence levels. Forty-three patients (48 teeth) out of 50 patients chose long-term monitoring of APEL while 7 patients (7 teeth) decided on endodontic intervention. Median knowledge scores increased from 58.3 (IQR: 41.7, 75.0) to 87.5 (IQR: 75.0, 100.0) (p < .001); median decisional conflict scale (DCS) scores decreased from 25.0 (IQR: 12.5, 34.4) to 3.1 (IQR: 0, 23.8) (p < .001), and 44 (88%) patients were confident or very confident with their treatment decisions. Statistical analyses showed that asymptomatic condition of tooth was the sole decision factor with statistical significance while socioeconomic factors (age, gender, race, education and income levels) showed no significant trend. The majority of patients presenting with APEL in this study chose long-term monitoring over immediate intervention. Using the video-based DA in the decision-making process significantly improved patients' knowledge and decreased their decisional conflict levels.

The development of a decision aid for patients with operable oropharyngeal carcinoma in the Netherlands – A mixed methods study

ObjectiveThe aim of this project is to create an interactive online patient decision aid (PDA) for oropharyngeal cancer (OPSCC) patients, eligible for transoral (robotic) surgery with an ultimate goal to assist both physicians and patients in making treatment choices. Materials and methodsFollowing the International Patient Decision Aid Standards, a mixed-methods approach was employed. The study involved semi-structured in-depth interviews with patients and physicians, thinking-out-loud sessions, and study-specific questionnaires. Thematic coding and analysis were conducted on verbatim transcriptions of audio-recorded interviews. ResultsThe PDA drafts were evaluated by twenty OPSCC survivors and twenty multidisciplinary specialists. Significant revisions were made after phase 1 to enhance readability and reduce text, whilst incorporating videos and graphics. Following all phases, both patients and specialists rated the PDA as comprehensible, feasible, and a valuable addition to regular counseling. ConclusionThis study showcases the development of a PDA for early stage oropharyngeal cancer patients considering surgery and radiotherapy options. The decision aid emphasizes the disparities in short- and long-term side effects between the two treatments. Patients and physicians found the decision aid to be understandable, user-friendly, and helpful for future patients. The PDA is available on https://beslissamen.nl/.

Developing a prototype web-based decision aid for adults with hearing loss

ObjectiveTo develop a prototype of a decision aid to be used on a website for adults with hearing loss. Design: Development was guided by the International Patient Decision Aid Standards (IPDAS) and included a survey and think-aloud process.Study sampleA total of 153 participants completed a survey about what to include in the decision aid (111 adults with hearing loss, 21 family members of adults with hearing loss, and 21 professionals). Six adults with hearing loss and six family members participated in a think-aloud process to provide feedback as they used an initial version of the decision aid.ResultsIn the survey, 26 of the 38 potential items were identified as being highest priority and were included in the initial version of the decision aid. This initial version was then tested in the think-aloud sessions and a prototype of a web-based version was developed based on participant responses related to: 1) information on the decision aid, 2) ease of use, 3) layout and orders of the items, 4) satisfaction, 5) areas for improvement (e.g., need for graphics).ConclusionsThe methodologies used in this study are recommended for developing decision aids for adults with acquired hearing loss.

Abstract A059: The role of conversational chatbots in enhancing shared decision making for African American men with early stage prostate cancer

Abstract Introduction : Enhancing shared decision making (SDM) for African American (AA) men with early stage prostate cancer using conversational chatbots (CCs) aims to improve communication, provide information, and empower them in their treatment decision making process. SDM is a collaborative approach that involves patients and healthcare providers working together based on medical evidence and patient preferences. However, AA men face significant disparities in prostate cancer (PCa) outcomes, including higher incidence and mortality rates compared to other racial/ethnic groups in the United States. Limited access to recommended PCa information and inadequate information during SDM conversations contribute to the challenges AA men face when making treatment decisions. The purpose of this study was to develop a conversational chatbot (CC) to provide PCa information in real time thus, enhancing SDM for AA men with PCa. Methods: The Ottawa Decision Support Framework and the International Patient Decision Aids Standards provided guidance and framework for the development of the CC. Our participatory research approach involved a diverse Community-Based Participatory Research Advisory Board (CBPRAB) consisting of twelve members. The CBPRAB included AA PCa survivors, AA men, caregivers, advocates, community leaders, and cancer care providers. Through training in research methods and focus group facilitation, CBPRAB members actively contributed their valuable insights, ensuring a collaborative and inclusive research process. Results: Five stakeholder focus groups (n = 44) comprising AA men, PCa survivors, spouses, healthcare professionals, and advocates provided valuable input for the development of the CC. In total, 819 questions were generated through interviews conducted during the focus groups. These questions were either inferred from the discussions or explicitly provided by the participants. The answers to these questions were developed from evidence based sources, such as the American Cancer Society and National Comprehensive Cancer Network Guidelines. An Android-based smartphone application that allows users to submit questions via speech was created. The application matches the user's question within the data set of 819 questions and provides answers in both voice and text formats. Conclusion : The Android-based smartphone application was alpha tested on four stakeholder focus groups (n=35). The CC developed in the smartphone application demonstrated the capacity to provide real time responses to user questions sourced from an 819-question database derived from our stakeholder focus groups. By offering evidence based information and directing users to additional resources if the question is not in the database, the CC can improve accessibility to medical information, thus enhancing the SDM process regarding early stage prostate cancer. Citation Format: Angela D. Adams. The role of conversational chatbots in enhancing shared decision making for African American men with early stage prostate cancer [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A059.

Development and evaluation of a decision aid for women eligible for organized breast cancer screening according to international standards: A multi-method study

Backgroundand purpose:In France, women lack information to make a shared decision to start breast cancer screening. Decision aids are useful to facilitate this discussion, yet few meet international standards. The objective of this project was to build, validate and measure the quality of a decision aid for organized breast screening in France, in line with international standards, intended for both women and healthcare professionals. Materials and methodsThis mixed-methods study was conducted between January 2017 and June 2022. The prototype was developed from a qualitative study, systematic review and targeted literature review and alpha tested during two Delphi rounds. Readability was evaluated with the Flesch score and content with International Patient Decision Aid Standards Instrument (IPSASi). ResultsAn online decision aid, accessible at www.Discutons-mammo.fr, written in French was developed. The content included eligibility, information about breast screening the advantages and disadvantages of screening, patient preferences and a patient-based discussion guide using text, infographics, and videos. The Flesch readability test score was 65.4 and the IPDASi construct quality score was 176 out of 188. ConclusionsThis decision aid complies with IPDASi standards and could help women eligible for breast screening in France make a shared decision with a specialized healthcare professional about whether or not to participate in organized breast screening.

Engagement of Older Adults Receiving Home Care Services and Their Caregivers in Health Decisions in Partnership With Clinical Teams: Protocol for a Multimethod Study to Prioritize and Culturally Adapt Decision Aids for Home Care.

Older adults (people aged 65 years and older) face many difficult decisions. Patient decision aids (PtDAs) can help them and their families make informed value-congruent decisions. Some PtDAs have been developed for the home care context, but little is known about scaling them for use with older adults in a different culture. This study aims to (1) assess the scalability of existing PtDAs for older adults in the home care context; (2) prioritize those that best match the decisional needs of older adults in home care; and (3) culturally adapt the prioritized PtDAs so they can be scaled successfully to the Quebec health care system. This multimethod study includes 3 phases. All phases will be overseen by a steering committee of older adults, caregivers, health professionals, decision makers, community organization representatives, and researchers with the needed expertise. In phase 1, we will use the Innovation Scalability Self-administered Questionnaire, a validated scalability self-assessment tool, to assess the scalability of 33 PtDAs previously identified in a systematic review. Based on their scalability, their quality (based on the International Patient Decision Aids Standards), and the importance of the decision point, we will retain approximately a third of these. In phase 2, we will conduct a 2-round web-based Delphi to prioritize the PtDAs selected in phase 1. Using a snowball recruitment strategy, we aim to recruit 60 Delphi participants in the province of Quebec, including older adults, caregivers, health professionals, decision makers involved in home care services, and PtDA experts. In the first round, we will ask participants to rate the importance of several PtDA decision points according to various criteria such as prevalence and difficulty on a 5-point Likert scale (1=not important to 5=very important). Approximately 6 of the highest-rated PtDAs will be retained for presentation in the second round, and we will select up to 3 PtDAs judged as having the highest priority for cultural adaptation. In phase 3, using the Chenel framework and user-centered design methods, we will update and adapt the PtDAs to the Quebec health care system and integrate these PtDAs into an interprofessional shared decision-making training program for home care teams. The adapted PtDAs will respect the International Patient Decision Aids Standards criteria. This study was funded in March 2022 by the Canadian Institutes of Health Research. Data collection for the web-based Delphi began in October 2023. Results are expected to be published in May 2024. This project will provide relevant and culturally appropriate decision support tools for older adults making difficult decisions and their home care teams that will be ready for scaling across the province of Quebec. PRR1-10.2196/53150.

Description of the Content and Quality of Publicly Available Information on the Internet About Inhaled Volatile Anesthesia and Total Intravenous Anesthesia: Descriptive Study.

More than 300 million patients undergo surgical procedures requiring anesthesia worldwide annually. There are 2 standard-of-care general anesthesia administration options: inhaled volatile anesthesia (INVA) and total intravenous anesthesia (TIVA). There is limited evidence comparing these methods and their impact on patient experiences and outcomes. Patients often seek this information from sources such as the internet. However, the majority of websites on anesthesia-related topics are not comprehensive, updated, and fully accurate. The quality and availability of web-based patient information about INVA and TIVA have not been sufficiently examined. This study aimed to (1) assess information on the internet about INVA and TIVA for availability, readability, accuracy, and quality and (2) identify high-quality websites that can be recommended to patients to assist in their anesthesia information-seeking and decision-making. Web-based searches were conducted using Google from April 2022 to November 2022. Websites were coded using a coding instrument developed based on the International Patient Decision Aids Standards criteria and adapted to be appropriate for assessing websites describing INVA and TIVA. Readability was calculated with the Flesch-Kincaid (F-K) grade level and the simple measure of Gobbledygook (SMOG) readability formula. A total of 67 websites containing 201 individual web pages were included for coding and analysis. Most of the websites provided a basic definition of general anesthesia (unconsciousness, n=57, 85%; analgesia, n=47, 70%). Around half of the websites described common side effects of general anesthesia, while fewer described the rare but serious adverse events, such as intraoperative awareness (n=31, 46%), allergic reactions or anaphylaxis (n=29, 43%), and malignant hyperthermia (n=18, 27%). Of the 67 websites, the median F-K grade level was 11.3 (IQR 9.5-12.8) and the median SMOG score was 13.5 (IQR 12.2-14.4), both far above the American Medical Association (AMA) recommended reading level of sixth grade. A total of 51 (76%) websites distinguished INVA versus TIVA as general anesthesia options. A total of 12 of the 51 (24%) websites explicitly stated that there is a decision to be considered about receiving INVA versus TIVA for general anesthesia. Only 10 (20%) websites made any direct comparisons between INVA and TIVA, discussing their positive and negative features. A total of 12 (24%) websites addressed the concept of shared decision-making in planning anesthesia care, but none specifically asked patients to think about which features of INVA and TIVA matter the most to them. While the majority of websites described INVA and TIVA, few provided comparisons. There is a need for high-quality patient education and decision support about the choice of INVA versus TIVA to provide accurate and more comprehensive information in a format conducive to patient understanding.

Evaluating the Acceptability and Feasibility of a Sexual Health-Focused Contraceptive Decision Aid for Diverse Young Adults: User-Centered Usability Study.

Young adults with low sexual health literacy levels may find it difficult to make informed decisions about contraceptive methods. We developed and pilot-tested a web-based decision aid-Healthy Sex Choices-designed to support diverse young adults with their contraceptive decision-making. This pilot study aimed to evaluate whether the Healthy Sex Choices decision aid is acceptable and feasible to patients and clinicians. We used the Ottawa Decision Support Framework and the International Patient Decision Aid Standards to develop and pilot the decision tool. We first conducted a needs assessment with our advisory panel (5 clinicians and 2 patients) that informed decision aid development. All panelists participated in semistructured interviews about their experience with contraceptive counseling. Clinicians also completed a focus group session centered around the development of sex education content for the tool. Before commencing the pilot study, 5 participants from ResearchMatch (Vanderbilt University Medical Center) assessed the tool and suggested improvements. Participants were satisfied with the tool, rating the acceptability as "good." Interviewees revealed that the tool made contraceptive decision-making easier and would recommend the tool to a family member or friend. Participants had a nonsignificant change in knowledge scores (53% before vs 45% after; P=.99). Overall, decisional conflict scores significantly decreased (16.1 before vs 2.8 after; P<.001) with the informed subscale (patients feeling more informed) having the greatest decline (23.1 vs 4.7; mean difference 19.0, SD 27.1). Subanalyses of contraceptive knowledge and decisional conflict illustrated that participants of color had lower knowledge scores (48% vs 55%) and higher decisional conflict (20.0 vs 14.5) at baseline than their white counterparts. Participants found Healthy Sex Choices to be acceptable and reported reduced decisional conflict after using the tool. The development and pilot phases of this study provided a foundation for creating reproductive health decision aids that acknowledge and provide guidance for diverse patient populations.

Development and usability of a decision aid to initiate anti-osteoporosis medication treatment in patients visiting the fracture liaison service with a recent fracture.

At fracture liaison services (FLS), patients with a recent fracture ánd osteoporosis or a prevalent vertebral fracture are advised to start anti-osteoporosis medication (AOM). This study describes the development of a decision aid (DA) to support patients and healthcare providers (HCPs) in their decision about whether to start AOM. The DA was developed according to International Patient Decision Aid Standards (IPDAS). A systematic procedure was chosen including scope, design, prototype development, and alpha testing. A previously developed DA for women with osteoporosis was used as a basis. Furthermore, input from literature searches, the Dutch guideline on management of osteoporosis, and from people with a fracture or osteoporosis was used. The updated DA was evaluated during alpha testing. The DA facilitates the decision of patients whether to initiate AOM treatment and provides information on fractures and osteoporosis, general risk factors that increase the likelihood of a subsequent fracture, the role of lifestyle, personalized risk considerations of a subsequent fracture with and without AOM treatment, and AOM options and their characteristics in an option grid. Alpha testing with 15 patients revealed that patient preferences and needs were adequately presented, and several suggestions for improvement (e.g. adding more specific information, simplifying terminology, improving icon use) were accounted for. Participants from the alpha testing recommended use of the DA during outpatient visits. Professionals and persons with osteoporosis were supportive of the proposed DA and its usability. The DA could help in a shared decision-making process between patients and HCPs.

OS02.5.A DEVELOPMENT OF A PATIENT DECISION AID FOR PATIENTS WITH RECURRENT HIGH-GRADE GLIOMA - A CO-CREATION PROCESS

Abstract BACKGROUND Patients with high-grade gliomas (HGG) face a difficult decision when the tumor recurs. There are no curable treatments, and all palliative treatment options include risks of complications and adverse effects. In this situation, support is needed for patients to navigate between these trade-offs and make preference-sensitive decisions. Shared decision making (SDM) is an approach where a decision is made in collaboration between a clinician and a patient by combining the clinician’s scientific evidence and knowledge with the patient’s subjective values and preferences. SDM aims to make quality decisions congruent with the individual patient’s informed preferences and to support patients in the decisional process. Patient decision aids (PtDA’s) have proven to be an efficient tool for facilitating SDM. However, there are no PtDA’s available for patients with recurrent HGG. This study aimed to develop a PtDA in a co-creation process with patients with recurrent HGG and family caregivers MATERIAL AND METHODS Based on the International Patient Decision Aids Standards, our team developed a PtDA through an iterative process of drafting and re-drafting. Patients and family caregivers were involved throughout the process as active team members. The PtDA was alpha-tested using structured interviews and the Preparation for Decision Making Scale questionnaire to assess the understandability, acceptability, and perceived usefulness of the PtDA. Data were analyzed using descriptive statistics and a directed content-analysis approach. RESULTS The final draft of the PtDA contained six treatment and care options, including the option of doing nothing. A balanced presentation of benefits and disadvantages was described for each option. In the alpha test, 31 patients with HGG, family caregivers, and clinicians assessed the final draft of the PtDA and found it to be understandable and acceptable. Patients and family caregivers perceived the PtDA to have a higher level of usefulness in supporting and preparing for decision making than did the clinicians (p=0.05). Ten of 11 clinicians were willing to use the PtDA in future consultations. CONCLUSION The PtDA was assessed to be understandable and acceptable by patients, family caregivers, and clinicians. It was perceived to support and prepare patients with recurrent HGG for decision making, and the clinicians were willing to use it in consultations. The involvement of patients and family caregivers as team members added value to the development process and the PtDA. However, the most applicable model of patient involvement in neurooncological research must be further explored to identify the benefits and limitations of approaches.

Comparison of analog and digital patient decision aids for the treatment of depression: a scoping review.

Patient decision aids (PDAs) are important tools to empower patients and integrate their preferences and values in the decision-making process. Even though patients with mental health problems have a strong interest in being more involved in decision making about their treatment, research has mainly focused on PDAs for somatic conditions. In this scoping review, we focus on patients suffering from depression and the role of PDAs for this patient group. The review offers an overview of digital and analog PDAs, their advantages and disadvantages as well as recommendations for further research and development. A systematic search of the existing literature guided by the Cochrane Handbook for Systematic Reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses - extension for scoping reviews (PRISMA-ScR) was conducted. Three electronic literature databases with the appropriate thematic focus were searched (PubMed, PsycInfo, and Web of Science). The search strategy used controlled and natural language to search for the key concepts decision aids and depression. The articles were selected in a two-step process guided by predefined inclusion and exclusion criteria. We narratively synthetized information extracted from 40 research articles. We included 40 articles in our review. Our review revealed that there is more focus on digital PDAs in research than in clinical practice. Digitalization can enhance the benefits of PDAs by developing tools that are more efficient, interactive, and personalized. The main disadvantages of both types of PDAs for the treatment of depression are related to time, dissemination, and capacity building for the health care providers. Digital PDAs need to be regularly updated, effective strategies for their dissemination and acceptance need to be identified, and clinicians need sufficient training on how to use digital PDAs. There is more research needed to study which forms of PDAs are most appropriate for various patient groups (e.g., older adults, or patients with comorbidities), and to identify the most effective ways of PDAs' integration in the clinical workflow. The findings from our review could be well aligned with the International Patient Decision Aids Standards. More research is needed regarding effective strategies for the implementation of digital PDAs into the clinical workflow, ethical issues raised by the digital format, and opportunities of tailoring PDAs for diverse patient groups.

Appraising publicly available online resources to support patients considering decisions about medical assistance in dying in Canada: an environmental scan.

Medical assistance in dying (MAiD) was legalized in Canada in 2016, with legislation updated in 2021. It is unclear whether resources are available to help patients make this difficult decision; therefore, we sought to identify and quality appraise Canadian MAiD resources for supporting patients making this decision. We conducted an environmental scan by searching Canadian websites for online MAiD resources that were published after the 2016 MAiD legislation, patient targeted, publicly accessible and able to inform decisions about MAiD in Canada. We excluded resources that targeted health care professionals or policy-makers, service protocols and personal narratives. Two authors appraised resources using the International Patient Decision Aids Standards (IPDAS) criteria and the Patient Education Materials Assessment Tool (PEMAT) for health literacy. Descriptive analysis was conducted. We defined resources as patient decision aids if 7 IPDAS defining criteria were met, and we rated resources as adequate for understandability or actionability if the PEMAT score was 70% or greater. We identified 80 MAiD resources. As of March 2023, 62 resources (90%) provided eligibility according to the 2021 legislation and 11 did not discuss any eligibility criteria. The median IPDAS score was 3 out of 7; 52% discussed alternative options and none provided benefits or harms. Of 80 resources, 59% were adequate for understandability and 29% were adequate for actionability. Although many resources on MAiD were updated with 2021 legislation, few were adequate to support patients with lower health literacy. There is a need to determine whether a patient decision aid would be appropriate for people in Canada considering MAiD.