Development and acceptability of a decision-aid for food allergy Oral immunotherapy in children.

BACKGROUND: Limited decision-support tools are available to help shared decision-making (SDM) regarding food oral immunotherapy (OIT) initiation. No current tool covers all foods, forms, and pediatric ages for which OIT is offered. METHODS: In compliance with International Patient Decision Aid Standards criteria, this pediatric decision-aid comparing OIT versus avoidance was developed in three stages. Nested qualitative data assessing OIT decisional needs were supplemented with evidence-synthesis from the OIT literature to create the prototype decision-aid content. This underwent iterative development with food allergy experts and patient advocacy stakeholders until unanimous consensus was reached regarding content, bias, readability, and utility in making a choice. Lastly, the tool underwent validated assessment of decisional acceptability, decisional conflict, and decisional self-efficacy. RESULTS: The decision-aid underwent 5 iterations, resulting in a 4-page written aid (Flesch-Kincaid reading level 6.1) explaining therapy choices, risks and benefits, providing self-rating for attribute importance for the options and self-assessment regarding how adequate the information was in decision-making. A total of n = 135 caregivers of food-allergic children assessed the decision-aid, noting good acceptability, high decisional self-efficacy (mean score 85.9/100) and low decisional conflict (mean score 20.9/100). Information content was rated adequate and sufficient, the therapy choices wording balanced, and presented without bias for a "best choice." Lower decisional conflict was associated with caregiver-reported anaphylaxis. CONCLUSIONS: This first pediatric OIT decision-aid, agnostic to product, allergen, and age has good acceptability, limited bias, and is associated with low decisional conflict and high decisional self-efficacy. It supports SDM in navigating the decision to start OIT or continue allergen avoidance.

Decision Aid for Colectomy in Recurrent Diverticulitis: Development and Usability Study.

BACKGROUND: Diverticular disease is a common gastrointestinal diagnosis with over 2.7 million clinic visits yearly. National guidelines from the American Society of Colon and Rectal Surgeons state that "the decision to recommend elective sigmoid colectomy after recovery from uncomplicated acute diverticulitis should be individualized." However, tools to individualize this decision are lacking. OBJECTIVE: This study aimed to develop an online educational decision aid (DA) to facilitate effective surgeon and patient communication about treatment options for recurrent left-sided diverticulitis. METHODS: We used a modified design sprint methodology to create a prototype DA. We engaged a multidisciplinary team and adapted elements from the Ottawa Personal Decision Guide. We then iteratively refined the prototype by conducting a mixed methods assessment of content and usability testing, involving cognitive interviews with patients and surgeons. The findings informed the refinement of the DA. Further testing included an in-clinic feasibility review. RESULTS: Over a 4-day in-person rapid design sprint, including patients, surgeons, and health communication experts, we developed a prototype of a diverticulitis DA, comprising an interactive website and handout with 3 discrete sections. The first section contains education about diverticulitis and treatment options. The second section clarifies the potential risks and benefits of both clinical treatment options (medical management vs colectomy). The third section invites patients to participate in a value clarification exercise. After navigating the DA, the patient prints a synopsis that they bring to their clinic appointment, which serves as a guide for shared decision-making. CONCLUSIONS: Design sprint methodology, emphasizing stakeholder co-design and complemented by extensive user testing, is an effective and efficient strategy to create a DA for patients living with recurrent diverticulitis facing critical treatment decisions.

A shared decision-making intervention for individuals living with chronic obstructive pulmonary disease who are considering the menu of pulmonary rehabilitation treatment options; a feasibility study.

OBJECTIVES: Shared Decision Making (SDM) has potential to support Pulmonary Rehabilitation (PR) decision-making when patients are offered a menu of centre- and home-based options. This study sought to evaluate the feasibility and acceptability of a three-component PR SDM intervention for individuals with Chronic Obstructive Pulmonary Disease (COPD) and PR healthcare professionals. METHODS: Participants were recruited from Dec 2021-Sep 2022. Healthcare professionals attended decision coaching training and used the consultation prompt during consultations. Individuals received the Patient Decision Aid (PtDA) at PR referral. Outcomes included recruitment capability, data completeness, intervention fidelity, and acceptability. Questionnaires assessed patient activation and decisional conflict pre and post-PR. Consultations were assessed using Observer OPTION-5. Optional interviews/focus groups were conducted. RESULTS: 13% of individuals [n = 31, 32% female, mean (SD) age 71.19 (7.50), median (IQR) MRC dyspnoea 3.50 (1.75)] and 100 % of healthcare professionals (n = 9, 78% female) were recruited. 28 (90.32%) of individuals completed all questionnaires. SDM was present in all consultations [standardised scores were mean (SD) = 36.97 (21.40)]. Six healthcare professionals and five individuals were interviewed. All felt consultations using the PtDA minimised healthcare professionals' bias of centre-based PR, increased individuals' self-awareness of their health, prompted consideration of how to improve it, and increased involvement in decision-making. DISCUSSION: Results indicate the study processes and SDM intervention is feasible and acceptable and can be delivered with fidelity when integrated into the PR pathway.

A quasi-experimental study about shared decision-making and motivational interviewing on patients with a recent fracture attending a fracture liaison services.

Shared decision making (SDM) aims to improve patients' experiences with care, treatment adherence and health outcomes. However, the effectiveness of SDM in patients with a recent fracture who require anti-osteoporosis medication (AOM) is unclear. The objective of this study was to assess the effectiveness of a multi-component adherence intervention (MCAI) including a patient decision aid (PDA) and motivational interviewing at fracture liaison services (FLS) on multiple outcomes compared to usual care (UC). This pre-post superiority study included patients with a recent fracture attending the FLS and with AOM treatment indication. The primary outcome was one-year AOM persistence measured by pharmacy records. Secondary outcomes included treatment initiation, AOM adherence (measured by medication possession ratio, MPR), decision quality (SDM process (0-100; best) and decisional conflict (0-100, highest conflict), subsequent fractures, and mortality. Outcomes were tested in MCAI and UC groups at the first FLS visit and 4- and 12-months after. Multiple imputation, uni- and multi-variable analyses were performed. Post-hoc analyses assessed the role of health literacy level. In total, 245 patients (MCAI: n = 136, UC: n = 109) were included. AOM persistence was 80.4% in the MCAI and 76.7% in the UC group (P=.626). SDM process scores were significantly better in MCAI (60.4 vs 55.1, P=.003). AOM initiation (97.8% vs 97.5%), MPR (90.9% vs 88.3%, P=.582), and decisional conflict (21.7 vs 23.0, P=.314) did not differ between groups. Results did not change importantly after adjustment. Stratified analyses by health literacy showed a better effect on MPR and SDM in those with adequate health literacy. This study showed no significant effect on AOM persistence however demonstrated a significant positive effect of MCAI on SDM process in FLS attenders.

When patients participate in the decision-making process (called shared decision-making), we may be able to improve the way they take medication and the way they experience care. We wanted to study how shared decision-making works in people who recently broke a bone and therefore needed anti-osteoporosis medication. We looked at two approaches that specialized nurses could use at the clinic. During the first visit, the nurses used a decision aid to discuss different medication options with the patient. During the second visit, nurses used "motivational interviewing" to better understand and support patients with taking their medication in the long term. We compared 109 patients who participated in this study to 126 patients who received normal care without the approaches. We found that the two approaches did not change the way people take their medication a year after the visits. However, patients who experienced the new approaches felt more involved in all phases of the decision to start and continue medication compared to patients receiving usual care. One year after the visits, people with higher health literacy were more likely to feel like they had been involved in the decision-making process, and more likely to still take their medication as prescribed.

Breast cancer patients' perspectives and needs about wed-based surgical decision aid: A qualitative study.

PURPOSE: Breast cancer diagnosis often presents patients with complex treatment decisions, particularly concerning surgical options. A patient decision aid can assist patients in making better decisions, and ultimately improving health outcomes positively. This study aims to explore the perceptions and needs of breast cancer patients regarding the utilization of wed-based surgical decision aids. METHODS: A descriptive qualitative study was conducted using semi-structured interviews with purposive sampling that were audio recorded and transcribed verbatim. A thematic analysis was conducted using NVivo 12 software. Participants were recruited from a tertiary general hospital in Shanghai, China. Inclusion criteria were being diagnosed with breast cancer, age over 18 years old, considering breast cancer surgery as a treatment option and able/willing to give informed consent. RESULTS: From March to May 2023, 16 patients consented to participate and completed the interviews. Three major themes were revealed, with corresponding sub-themes: (1) informative and useful content (need to know as much information as possible, easy to understand and presented in multiple ways and highly credible from reliable resource); (2) user-friendly on design (easy to operate, simple function and man-machine interaction); and (3) suggested timing of use. CONCLUSIONS: Patients' perspectives and needs about wed-based surgical decision aids are numerous and diverse. In designing wed-based surgical decision aids for breast cancer patients, content, design and timing are all factors that need to be taken into consideration to encourage informed surgical decisions. Further work will focus on developing a feasible and acceptable web-based surgical patient decision aid (PtDA), and test its usability in a clinical setting to understand if the PtDA can meet the decisional needs of breast cancer patients, thus to improve quality of decision-making.

Supporting the Choice for Conservative and Surgical Treatment in Female Stress Urinary Incontinence: Development and Evaluation of a Patient Decision Aid.

INTRODUCTION: Making a treatment decision for female stress urinary incontinence (SUI) can be challenging for patients and healthcare providers. Dutch guidelines advise to counsel both pelvic floor muscle therapy and midurethral sling surgery as primary treatment options in uncomplicated moderate to severe cases. The use of a patient decision aid (PDA) can support decision-making, reduce decisional conflict and decisional regret, and increase knowledge. The aim of this study was to develop and evaluate an online PDA for females (SUI). METHODS: This mixed-methods study was performed in consecutive stages by a multidisciplinary working group. PDA design was based on the International Patient Decision Aids Standards (IPDAS) and on outcomes of needs assessments amongst patients and healthcare providers. Content was based on Dutch guidelines, targeted literature searches and patient information from the Dutch scientific society for gynecology. The concept version was evaluated by patients, patients' advocates, and healthcare providers. RESULTS: Using the nominal group technique, the working group established the design and format of the PDA. Fifty-six out of 58 applicable items of the IPDAS were met. The PDA contains information on the condition, advice on lifestyle adaptations, and describes surgical and nonsurgical treatment options. The option grid contains comparisons of the primary treatment options. Furthermore, value clarification exercises and narratives were included. Acceptability and usability evaluation of the concept version was performed by 15 healthcare providers, three patients, and two patients' advocates. Comments were processed in the working group, resulting in the final version of the PDA, which was supported by all assessors. CONCLUSION: Our multidisciplinary working group developed an online PDA for women with moderate to severe SUI including conservative and surgical treatment options, based on IPDAS criteria, guidelines, scientific evidence, and needs assessments from patients and healthcare providers. This PDA is supported by patients, healthcare providers, scientific societies, and the Dutch patients' association. The next step is to evaluate and implement this PDA in daily practice. TRIAL REGISTRATION: ID 2014-308.

Evaluating the Impact of a Shared Decision-making Intervention for Patients with Renal Cell Carcinoma: The SDM-RCC Study Protocol.

The aim of the SDM-RCC study is to evaluate the impact of a comprehensive shared decision-making (SDM) intervention for patients with renal cell carcinoma (RCC) on the decision-making process and outcomes. The intervention includes online patient decision aids (PtDAs) and training of health care professionals (HCPs) in the use of PtDAs and SDM. The study is a multicenter, prospective pretest-posttest cohort in six Dutch hospitals, focusing on patients with localized or metastatic RCC. The primary outcome is the observed quality of the decision-making process, measured using OPTION-5 scores. Secondary outcomes include perceived quality of the decision-making process, decision quality, and implementation of the intervention (user statistics and interviews). Quantitative analysis will be performed on questionnaire data, while qualitative analysis will be performed on interviews using coding based on established frameworks. The study results could improve understanding of the decision-making process for RCC patients from patient, HCP, and observer perspectives. The SDM tool implemented is expected to support the decision-making process. PATIENT SUMMARY: We are conducting a trial on the effects of a tool to support shared decision-making by patients with kidney cancer who are facing treatment decisions. This paper outlines the protocol that will be used for the trial.

Closing the value-based circle in shared decision-making: a digital framework for informing the shared decision-making process through patient reported outcome and experience measures.

Background: The spreading adoption of value-based models of healthcare delivery has incentivized the use of patient-reported outcomes and experience measures (PROMs and PREMs) in clinical practice, with the potential to enrich the decision-making process with patient-reported data. Methods: This perspective article explores PROs and the shared decision-making (SDM) process as components of value-based healthcare. We describe the potential of PROMs and PREMs within the decision-making process and present a digital framework for informing the shared decision-making process using aggregated data from a healthcare system PROMs and PREMs program, including early results from implementation in hospital network in Madrid, Spain. Results: The proposed digital framework incorporates aggregated data from a hospital network PROMs and PREMs program as part of a digital patient decision aid (PDA) for patients with lymphoma. After the first hematologist appointment, participating patients access the PDA to review relevant information about clinical and patient-reported outcomes for each of the possible options, assign a personal order of priority to different outcomes, and then select their preferred course of action. Patients' answers are automatically uploaded to the EHR and discussed with hematologists at the next appointment. After beginning treatment, patients are invited to participate in the network PROMs program; participants' PROMs data are fed back into the PDA, thus "closing the circle" between the decision-making process and patient-reported data collection.During the first 14 months after launching the decision aid in October 2022, of 25 patients diagnosed with follicular lymphoma at the four participating hospitals, 13 patients decided to participate. No significant differences in age or sex were observed between groups. Average SDM Q-9 score for patients filling in the questionnaire (n = 6) was 36.15 of 45 points. Conclusion: Various obstacles toward widespread implementation of SDM exist such as time constraints, lack of motivation, and resistance to change. Support and active engagement from policy makers and healthcare managers is key to overcome hurdles for capturing patient-reported data and carrying out shared decision-making at healthcare system level. Early results of a digital framework for PRO-enriched SDM seem to be beneficial to the decision-making process.

Development of a decision aid with cost information for heart failure medication in Singapore.

Objective: This study presents the development process of a heart failure (HF) medication decision aid (DA) specific to Singapore context, with the objective of promoting cost conversations. Methods: Phase 1 was to create a DA prototype, where two HF clinicians were consulted on their input and needs. Phase 2 was pilot testing where the prototype was tested on HF patients and revised based on their feedback. Results: The DA is a one-page poster that compares only two classes of HF medications. It encompasses seven attributes for comparison, including route of administration, treatment duration, frequency of use, hospitalization rate, survival rate, low blood pressure probability with personalized subsidized cost being the key attribute. A total of 48 patients participated in the pilot testing with only 2 patients (4.2 %) finding the DA difficult to understand. Almost all patients agreed that the DA provided greater clarity in the medication options. Conclusion: By integrating the needs of both clinicians and patients and conducting user testing, we developed a novel HF medication DA. Patients found the tool easy to understand and acceptable. Innovation: This innovative DA aims to improve cost conversations by providing tailored, concise, and locally relevant information for efficient use.

Incorporating patient, caregiver, and provider perspectives in the co-design of an app to guide Hospital at Home admission decisions: a qualitative analysis.

Objective: Hospital at Home (HaH) programs currently lack decision support tools to help efficiently navigate the complex decision-making process surrounding HaH as a care option. We assessed user needs and perspectives to guide early prototyping and co-creation of 4PACS (Partnering Patients and Providers for Personalized Acute Care Selection), a decision support app to help patients make an informed decision when presented with discrete hospitalization options. Methods: From December 2021 to January 2022, we conducted semi-structured interviews via telephone with patients and caregivers recruited from Atrium Health's HaH program and physicians and a nurse with experience referring patients to HaH. Interviews were evaluated using thematic analysis. The findings were synthesized to create illustrative user descriptions to aid 4PACS development. Results: In total, 12 stakeholders participated (3 patients, 2 caregivers, 7 providers [physicians/nurse]). We identified 4 primary themes: attitudes about HaH; 4PACS app content and information needs; barriers to 4PACS implementation; and facilitators to 4PACS implementation. We characterized 3 user descriptions (one per stakeholder group) to support 4PACS design decisions. User needs included patient selection criteria, clear program details, and descriptions of HaH components to inform care expectations. Implementation barriers included conflict between app recommendations and clinical judgement, inability to adequately represent patient-risk profile, and provider burden. Implementation facilitators included ease of use, auto-populating features, and appropriate health literacy. Conclusions: The findings indicate important information gaps and user needs to help inform 4PACS design and barriers and facilitators to implementing 4PACS in the decision-making process of choosing between hospital-level care options.

A person-centred consultation intervention to improve shared decision-making about, and uptake of, osteoporosis medicines (iFraP): a pragmatic, parallel-group, individual randomised controlled trial protocol.

Background: Good quality shared decision-making (SDM) conversations involve people with, or at risk of osteoporosis and clinicians collaborating to decide, where appropriate, which evidence-based medicines best fit the person's life, beliefs, and values. We developed the improving uptake of Fracture Prevention drug treatments (iFraP) intervention comprising a computerised Decision Support Tool (DST), clinician training package and information resources, for use in UK Fracture Liaison Service consultations.Two primary objectives to determine (1) the effect of the iFraP intervention on patient-reported ease in decision-making about osteoporosis medicines, and (2) cost-effectiveness of iFraP intervention compared to usual NHS care. Secondary objectives are to determine the iFraP intervention effect on patient reported outcome and experience measures, clinical effectiveness (osteoporosis medicine adherence), and to explore intervention acceptability, mechanisms, and processes underlying observed effects, and intervention implementation. Methods: The iFraP trial is a pragmatic, parallel-group, individual randomised controlled trial in patients referred to a Fracture Liaison Service, with nested mixed methods process evaluation and health economic analysis. Participants aged ≥50 years (n=380) are randomised (1:1 ratio) to one of two arms: (1) iFraP intervention (iFraP-i) or (2) comparator usual NHS care (iFraP-u) and are followed up at 2-weeks and 3-months. The primary outcome is ease of decision-making assessed 2 weeks after the consultation using the Decisional Conflict Scale (DCS). The primary objectives will be addressed by comparing the mean DCS score in each trial arm (using analysis of covariance) for patients given an osteoporosis medicine recommendation, alongside a within-trial cost-effectiveness and value of information (VoI) analysis. Process evaluation data collection includes consultation recordings, semi-structured interviews, and DST analytics. Discussion: The iFraP trial will answer important questions about the effectiveness of the new 'iFraP' osteoporosis DST, coupled with clinician training, on SDM and informed initiation of osteoporosis medicines. Trial registration: ISRCTN 10606407, 21/11/2022 https://doi.org/10.1186/ISRCTN10606407.

Background: For people with osteoporosis, broken bones (called 'fragility fractures') can occur from low or no trauma and cause significant disability. Medicines can strengthen bone and lower the chance of fragility fractures. However, many people who experience a fragility fracture do not start or continue taking osteoporosis medicines. People commonly choose not to take osteoporosis medicines because they are unsure what medicines are for, confused about fracture 'risk' and/or worried about side-effects. To address this, we developed the 'iFraP intervention': 1. The iFraP 'decision-support tool': to support patients and healthcare professionals talk together to make decisions about medicines2. iFraP training for healthcare professionals to:a. use the tool in appointments with patientsb. give understandable, clear and consistent information c. listen to and address patient concerns This trial investigates whether the iFraP intervention makes decision-making about osteoporosis medicines easier, and whether it is cost-effective, acceptable and practical to deliver. Methods: 380 patients will take part who will be 50 years and older and referred to a fracture prevention service, because they have broken a bone. Patients taking part will be allocated to receive either a usual NHS appointment or an appointment using the iFraP intervention. Patients will complete a questionnaire before their appointment, and 2 weeks and 3 months afterwards. Some patients will be asked if they consent to have their appointment recorded and/or be interviewed, to understand how the decision-support tool is being used, and patient's views of the iFraP intervention. Outputs: If successful, the iFraP intervention will benefit patients and the NHS by helping patients make decisions about osteoporosis medicine. If the iFraP intervention increases the number of people with osteoporosis that start and continue taking osteoporosis medicines, iFraP will lower the number of future fractures, and reduce the negative outcomes that result from fractures (e.g. significant disability).

Cost-utility Analysis of Navigate, a Treatment Decision Aid for Men with Prostate Cancer and Their Partners, in Comparison to Usual Care.

BACKGROUND AND OBJECTIVE: Evidence on the cost effectiveness of decision aids to guide management decisions for men with prostate cancer is limited. We examined the cost utility of the Navigate online decision aid for men with prostate cancer in comparison to usual care (no decision aid). METHODS: A Markov model with a 10-yr time horizon was constructed from a government health care perspective. Data from the Navigate trial (n = 302) and relevant published studies were used for model inputs. Incremental costs and quality-adjusted life-years (QALYs) were calculated for the two strategies. One-way and probabilistic sensitivity analyses were undertaken to address model uncertainty. KEY FINDINGS AND LIMITATIONS: On average, the Navigate strategy was estimated to cost AU$8899 (95% uncertainty interval [UI] AU$7509-AU$10438) and produce 7.08 QALYs (95% UI 6.73-7.36) in comparison to AU$9559 (95% UI AU$8177-AU$11017) and 7.03 QALYs (95% UI 6.67-7.31) or usual care. The Navigate strategy dominated usual care as it produced cost-savings and higher QALYs, although differences for both outcomes were small over 10 yr. The likelihood of Navigate being cost effective at a conventionally acceptable threshold of AU$50000 per QALY gained was 99.7%. This study is limited by the availability, quality, and choice of the data used in the model. CONCLUSIONS AND CLINICAL IMPLICATIONS: Use of an online decision aid for men with prostate cancer appears to be cost effective relative to usual care in Australia, driven by the higher acceptance and uptake of active surveillance. Wider implementation of decision aids may better inform men diagnosed with prostate cancer about their management options. PATIENT SUMMARY: We looked at the cost effectiveness of an online decision aid for guiding Australian men with prostate cancer in choosing a management option. We found that this decision aid was cost effective, mainly because more men chose active surveillance. Decision aids that inform patients about their management options should be more widely used in health care.

Discordant Care and Decision Quality: Patients' Reasons for Not Receiving Their Initial Test of Choice in Colorectal Cancer Screening.

BACKGROUND: Concordance between a person's values and the test or treatment they ultimately receive is widely considered to be an essential outcome for good decision quality. There is little research, however, on why patients receive "discordant" care. A large, randomized trial of decision aids for colorectal cancer (CRC) screening provided an opportunity to assess why some patients received a different test than the one they preferred at an earlier time point. METHODS: Of 688 patients who participated in the trial, 43 received a different CRC screening test than the one they selected after viewing a decision aid 6 mo prior. These patients answered 2 brief, open-ended questions about the reasons for this discordance. The research team analyzed their answers using qualitative description. RESULTS: Patient responses reflected 6 major categories: barriers or risks of initially favored test, benefits of alternative test, costs or health insurance coverage, discussion with family or friends, provider factors or recommendation, and health issues. CONCLUSIONS: Some of the patients' explanations fit well with the informed concordance approach, which infers poor decision quality from the existence of discordant care, since in these cases it appears that the patient's values and preferences were not adequately respected. Other statements suggest that the patient had an informed rationale for changing their mind about which test to undergo. These cases may reflect high-quality decision making, despite the existence of discordance as measured in the trial. This analysis highlights a major challenge to a popular approach for assessing decision quality, the difficulty of normatively assessing the quality of decision making when apparent discordant care has been provided, and the need to assess patient values and preference over time. HIGHLIGHTS: Value-choice concordance is an accepted measure for assessing decision quality in decision aid trials, but greater exploration of apparently discordant care challenges key assumptions of this method; this study provides evidence that discordance as typically measured may not always reflect low-quality patient decision making.Researchers evaluating decision aids and assessing decision quality should consider the use of qualitative methods to supplement measures of decision quality and consider assessing patient preferences at multiple time points.

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

Objective: To 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. Methods: Semi-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. Results: Thirteen 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. Conclusion: We identified relevant opportunities for improvement of an existing decision aid and developed an updated version and accompanying implementation strategy accordingly. Innovation: This 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.

Patient education and counselling of fertility preservation for transgender and gender diverse people: A scoping review.

Objectives: To examine patient education, counselling practices, decision aids, and education resources related to fertility preservation for transgender and gender diverse (TGD) youth and young adults. Methods: A scoping review was conducted using a comprehensive literature search (Ovid MEDLINE, PubMed Medline, OVID Embase, Ovid PsychoINFO, and Cochrane Central Register of Controlled Trials) conducted from 1806 to October 21, 2022. Inclusion criteria involved abstracts and articles on patient education, counselling, decision aids or education resources regarding fertility preservation for TGD youth and adults. Results: Of 1,228 identified articles and abstracts, only six articles met inclusion criteria. Three key themes were identified: (1) patient education and counselling practices (n = 4), with majority of patients receiving fertility preservation counselling at their respective centres; (2) decision aids and strategies for clinicians on fertility preservation for TGD individuals (n = 2) and; (3) patient education resources (n = 1). There was a paucity of literature on decision aids and patient education resources. Conclusions: This study highlights the need to further develop and evaluate decision aids for healthcare providers and patient education resources, including eLearning modules, around fertility preservation for TGD individuals.

Development of Promising Interventions to Improve Human Papillomavirus Vaccination in a School-Based Program in Quebec, Canada: Results From a Formative Evaluation Using a Mixed Methods Design.

BACKGROUND: Despite the availability of school-based human papillomavirus (HPV) vaccination programs, disparities in vaccine coverage persist. Barriers to HPV vaccine acceptance and uptake include parental attitudes, knowledge, beliefs, and system-level barriers. A total of 3 interventions were developed to address these barriers: an in-person presentation by school nurses, an email reminder with a web-based information and decision aid tool, and a telephone reminder using motivational interviewing (MI) techniques. OBJECTIVE: Here we report on the development and formative evaluation of interventions to improve HPV vaccine acceptance and uptake among grade 4 students' parents in Quebec, Canada. METHODS: In the summer of 2019, we conducted a formative evaluation of the interventions to assess the interventions' relevance, content, and format and to identify any unmet needs. We conducted 3 focus group discussions with parents of grade 3 students and nurses. Interviews were recorded, transcribed, and analyzed for thematic content using NVivo software (Lumivero). Nurses received training on MI techniques and we evaluated the effect on nurses' knowledge and skills using a pre-post questionnaire. Descriptive quantitative analyses were carried out on data from questionnaires relating to the training. Comparisons were made using the proportions of the results. Finally, we developed a patient decision aid using an iterative, user-centered design process. The iterative refinement process involved feedback from parents, nurses, and experts to ensure the tool's relevance and effectiveness. The evaluation protocol and data collection tools were approved by the CHU (Centre Hospitalier Universitaire) de Québec Research Ethics Committee (MP-20-2019-4655, May 16, 2019). RESULTS: The data collection was conducted from April 2019 to March 2021. Following feedback (n=28) from the 3 focus group discussions in June 2019, several changes were made to the in-person presentation intervention. Experts (n=27) and school nurses (n=29) recruited for the project appreciated the visual and simplified information on vaccination in it. The results of the MI training for school nurses conducted in August 2019 demonstrated an increase in the skills and knowledge of nurses (n=29). School nurses who took the web-based course (n=24) filled out a pretest and posttest questionnaire to evaluate their learning. The rating increased by 19% between the pretest and posttest questionnaires. Several changes were made between the first draft of the web-based decision-aid tool and the final version during the summer of 2019 after an expert consultation of experts (n=3), focus group participants (n=28), and parents in the iterative process (n=5). More information about HPV and vaccines was added, and users could click if more detail is desired. CONCLUSIONS: We developed and pilot-tested 3 interventions using an iterative process. The interventions were perceived as potentially effective to increase parents' knowledge and positive attitudes toward HPV vaccination, and ultimately, vaccine acceptance. Future research will assess the effectiveness of these interventions on a larger scale.

A Randomized Pilot Trial of the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool) with Their Children About Their Genetic Origins.

INTRODUCTION: Parents who use donated gametes or embryos to form their families struggle with telling their children about their genetic origins. We developed the Tool to Empower Parental Telling and Talking (TELL Tool) to support parents in disclosure to their children and an eBook attention control. METHOD: A randomized parallel, two-group, attention-controlled clinical pilot trial was conducted online during COVID-19. Feasibility, acceptability, and preliminary effects among parents with children aged 1-16 years were examined. RESULTS: Over 10 months, our target of 75 parents were enrolled (85% of eligible [95% confidence interval (CI), 76% to 91%]), and 68% (95% CI: 57% to 78%) were retained at 12 weeks. At 4 and 12 weeks, positive trends were found for parental disclosure, telling confidence, and anxiety compared with attention controls. DISCUSSION: The study protocol is feasible, and the TELL Tool is acceptable to parents and demonstrates a positive effect on parents' ability to tell their children. The results support the implementation of a large efficacy trial.

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.

Patient Perspectives on a Patient-Facing Tool for Lung Cancer Screening.

BACKGROUND: Individuals with high risk for lung cancer may benefit from lung cancer screening, but there are associated risks as well as benefits. Shared decision-making (SDM) tools with personalized information may provide key support for patients. Understanding patient perspectives on educational tools to facilitate SDM for lung cancer screening may support tool development. AIM: This study aimed to explore patient perspectives related to a SDM tool for lung cancer screening using a qualitative approach. METHODS: We elicited patient perspectives by showing a provider-facing SDM tool. Focus group interviews that ranged in duration from 1.5 to 2 h were conducted with 23 individuals with high risk for lung cancer. Data were interpreted inductively using thematic analysis to identify patients' thoughts on and desires for a patient-facing SDM tool. RESULTS: The findings highlight that patients would like to have educational information related to lung cancer screening. We identified several key themes to be considered in the future development of patient-facing tools: barriers to acceptance, preference against screening and seeking empowerment. One further theme illustrated effects of patient-provider relationship as a limitation to meeting lung cancer screening information needs. Participants also noted several suggestions for the design of technology decision aids. CONCLUSION: These findings suggest that patients desire additional information on lung cancer screening in advance of clinical visits. However, there are several issues that must be considered in the design and development of technology to meet the information needs of patients for lung cancer screening decisions. PATIENT OR PUBLIC CONTRIBUTION: Patients, service users, caregivers or members of the public were not involved in the study design, conduct, analysis or interpretation of the data. However, clinical experts in health communication provided detailed feedback on the study protocol, including the focus group approach. The study findings contribute to a better understanding of patient expectations for lung cancer screening decisions and may inform future development of tools for SDM.

Qualitative user experience evaluation of the MS trust's online treatment decision aid tool's accommodation of planning pregnancy.

Background: Decision-making about treatment when planning a pregnancy (family planning) is complex for women living with multiple sclerosis (MS). Decision tools can help this process, in 2016 MS Trust launched their online digital treatment decision tool to support people with MS. Objectives: To evaluate user-experience of this tool by exploring women's opinions about its content, interface, and usefulness in the context of family planning; and to synthesize recommendations to improve the tool. Methods: Thirty participants qualitatively evaluated the tool using Think Aloud methodology. Sessions were conducted online using Microsoft Teams and were video recorded. Transcription was automated and data were thematically analyzed. Results: Women's first impression was that the tool presented a lot of information at once, which was difficult to take in, and they found it difficult to navigate. Although the tool was helpful in allowing them to compare treatment options, the filters were confusing, and the information related to pregnancy sometimes contradicted advice from their healthcare practitioners. They suggested rewording the pregnancy recommendations and filters, updating some content, and making some changes to the interface to meet users' cognitive needs. Conclusion: The MS Trust treatment decision tool is excellent in helping women with treatment choices at initial diagnosis. However, it is not currently as useful when considering family plans. Recommendations were conveyed to MS Trust where some are now applied to the new live version and the rest are to be considered for future updating projects.