Right Amount Of Information Research Articles

Applying Engagement Marketing And Human-Centered Design to Cocreate a Digital Decision Support Tool for Research Participation with LGBTQIA+ Community Members.

We used engagement marketing and human-centered design principles to cocreate a digital decision support tool for research participation with LGBTQIA+ community members to help them make an informed decision about joining the All of Us Research Program. Building on results from the research phase, we conducted eight problem validation and solutioning workshops with 48 LGBTQIA+ community members. Community members validated barriers to engagement with All of Us and brainstormed 47 potential digital solutions. We developed potential solutions into 27 concepts (descriptive text and visual storyboards) and assessed acceptability, appropriateness, feasibility, and engagement in a set of 10 concept testing workshops with 57 community members. We developed one of the highest rated concepts, the "Decide Later Tool," into a prototype and tested it with 45 LGBTQIA+ community members and 14 community advisory group members to assess acceptability, appropriateness, feasibility, usability, and engagement. Prototype testing participants indicated that the tool provides information to help with decision making, provides a clear value or benefit to them, was designed for someone like them, provides the right amount of information, and is easy to use; they also offered constructive feedback to improve it. Across the design and development phases, community members indicated that the process of engaging them demonstrated integrity, competence, dependability, trust, and collaboration; fostered a sense of connection to All of Us; and will enhance future engagement with All of Us. Our next steps are to develop the prototype into a fully functioning web tool and pilot test it in community and health care settings.

(025) DEVELOPING AND TESTING AN ONLINE PRIMARY CARE TOOLKIT FOR COMMUNITY MANAGEMENT OF VULVODYNIA

Abstract Introduction Vulvodynia is a chronic vulvar pain condition that affects 8-10% of women and people with vulvas. Despite its prevalence, healthcare providers (HCPs) often lack awareness, knowledge, and confidence in managing vulvodynia. This knowledge gap can lead to diagnostic delays, misdiagnoses, and reflex referrals to specialists. Moreover, research shows that patients feel invalidated in healthcare settings and perceive that their HCPs’ lack of vulvodynia awareness negatively impacts their care. Thus, there is a need for educational resources about vulvodynia that can be applied in healthcare settings. Specifically, community-based primary care providers could greatly benefit from vulvodynia resources because they are often a point of entry into the healthcare system. Objective To develop and test a new, online toolkit tailored to supporting community-based primary care providers with the assessment, diagnosis, and management of vulvodynia. In this pilot study, we sought to evaluate the adoption, acceptability, and preliminary efficacy of the vulvodynia toolkit in a pilot sample of community-based family physicians. Methods A working group of HCPs (family physicians, gynecologists, physiotherapist, psychologists) and patient partners with vulvodynia expertise developed the toolkit. The toolkit was designed in an online, modular format that could be integrated into short healthcare visits. A sample of 19 family physicians completed online surveys before and after piloting the toolkit in their community practice for 6 months. Adoption was measured in the post-toolkit survey by assessing the frequency and timing of toolkit use during the pilot period. Acceptability was measured in the post-toolkit survey by assessing physicians’ satisfaction with the toolkit content and quality. Preliminary efficacy was assessed by comparing physicians’ self-reported level of confidence with diagnosing, treating, and supporting patients with vulvodynia before and after the pilot period. Results Adoption. During the pilot period, physicians used the toolkit in advance of patient appointments (52.6%), during patient appointments (5.3%), or used a combination of both timepoints (42.1%). Over the 6-month pilot period, physicians used the toolkit an average of 2.61 times (SD = 1.50) in advance of seeing patients and 1.63 times (SD = 2.19) during patient appointments. Acceptability. Most physicians reported that they were satisfied or very satisfied with the toolkit overall (79.0%) and that it contained the right amount of information (68.4%). On average, the physicians rated their likelihood of recommending the toolkit to a colleague as 8/10 (SD = 1.75). Preliminary efficacy. Using repeated-measures MANOVAs, we found significant pre-toolkit to post-toolkit increases in physician’s confidence for diagnosing vulvodynia, p = .003, ηp 2 = .59, treating vulvodynia, p < .001, ηp2 = .72, and supporting patients with vulvodynia, p < .001, ηp2 = .73. Conclusions In this pilot study, we developed and tested an online vulvodynia toolkit tailored to educating community-based primary care providers. The toolkit demonstrated high acceptability and preliminary efficacy amongst a pilot group of family physicians, with large effect sizes. The results of this study exemplify the value of tailored education for improving physicians’ confidence with managing vulvodynia in community practice and lay the foundation for upscaling this tool to a wider population of HCPs. Disclosure No.

Facilitators of and Barriers to the Use of a Digital Self-Management Service for Diagnostic Testing: Focus Group Study With Potential Users.

Health care lags in digital transformation, despite the potential of technology to improve the well-being of individuals. The COVID-19 pandemic has accelerated the uptake of technology in health care and increased individuals' willingness to perform self-management using technology. A web-based service, Directlab Online, provides consumers with direct digital access to diagnostic test packages, which can digitally support the self-management of health. This study aims to identify the facilitators, barriers, and needs of Directlab Online, a self-management service for web-based access to diagnostic testing. A qualitative method was used from a potential user's perspective. The needs and future needs for, facilitators of, and barriers to the use of Directlab Online were evaluated. Semistructured focus group meetings were conducted in 2022. Two focus groups were focused on sexually transmitted infection test packages and 2 were focused on prevention test packages. Data analysis was performed according to the principles of the Framework Method. The Consolidated Framework for Implementation Research was used to categorize the facilitators and barriers. In total, 19 participants, with a mean age of 34.32 (SD 14.70) years, participated in the focus groups. Important barriers were a lack of privacy information, too much and difficult information, and a commercial appearance. Important facilitators were the right amount of information, the right kind of tests, and the involvement of a health care professional. The need for a service such as Directlab Online was to ensure its availability for users' health and to maintain their health. According to the participants, facilitators and barriers were comprehension of the information, the goal of the website, and the overall appearance of the service. Although the service was developed in cocreation with health care professionals and users, the needs did not align. The users preferred understandable and adequate, but not excessive, information. In addition, they preferred other types of tests to be available on the service. For future research, it would be beneficial to focus on cocreation between the involved medical professionals and users to develop, improve, and implement a service such as Directlab Online.

A Pediatric Interprofessional Cardiac Intensive Care Unit Intervention: CICU Teams and Loved Ones Communicating (CICU TALC) is Feasible, Acceptable, and Improves Clinician Communication Behaviors in Family Meetings.

Parents of children in the pediatric cardiac intensive care unit (CICU) are often unprepared for family meetings (FM). Clinicians often do not follow best practices for communicating with families, adding to distress. An interprofessional team intervention for FM is feasible, acceptable, and positively impacts family preparation and conduct of FM in the CICU. We implemented a family- and team-support intervention for conducting FM and conducted a pretest-posttest study with parents of patients selected for a FM and clinicians. We measured feasibility, fidelity to intervention protocol, and parent acceptability via questionnaire and semi-structured interviews. Clinician behavior in meetings was assessed through semantic content analyses of meeting transcripts tracking elicitation of parental concerns, questions asked of parents, and responses to parental empathic opportunities. Logistic and ordinal logistic regression assessed intervention impact on clinician communication behaviors in meetings comparing pre- and post-intervention data. Sixty parents (95% of approached) were enrolled, with collection of 97% FM and 98% questionnaire data. We accomplished > 85% fidelity to intervention protocol. Most parents (80%) said the preparation worksheet had the right amount of information and felt positive about families receiving this worksheet. Clinicians were more likely to elicit parental concerns (adjusted odds ratio = 3.42; 95%CI [1.13, 11.0]) in post-intervention FM. There were no significant differences in remaining measures. Implementing an interprofessional team intervention to improve family preparation and conduct of FM is locally feasible, acceptable, and changes clinician behaviors. Future research should assess broader impact of training on clinicians, patients, and families.

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 and assessment of educational materials for spinal muscular atrophy carrier screening in the Plain community.

Spinal muscular atrophy (SMA) has been reported in both Amish and Mennonite (Plain) communities, and a higher incidence has been observed in certain Mennonite communities compared to the general population. There are several therapies for SMA, but all are most effective in pre-symptomatic newborns. To identify couples from the Wisconsin Plain community who are most likely to have a child with SMA, carrier screening is offered via mailed kits with at-home specimen collection. Our survey data about Plain families' perspectives on genetic testing suggest educational materials are needed for individuals providing informed consent with at-home specimen collection. We therefore developed a Plain population-specific educational trifold brochure about SMA carrier screening by incorporating existing medical education strategies and feedback from Plain community members and their health care providers. Along with the brochure, surveys were included in the kits to assess baseline knowledge about SMA carrier screening ("pre-education") as well as improvement in knowledge after reviewing the brochure and cultural appropriateness of the brochure ("post-education"). Fifty-five testing kits were distributed, and 26 survey pairs (pre- and post-education) were returned and analyzed (response rate 47%). Respondents had high baseline knowledge with an average of 5 of 7 questions (71%) answered correctly on the pre-education survey. Knowledge improved after reviewing the brochure as the average score increased to 6.5 of 7 questions (93%) answered correctly. Questions about risks of having an affected child after positive or negative carrier screening showed the most improvement from the pre-education to post-education surveys. Most respondents indicated the brochure was helpful, was easy to understand, and contained the right amount of information. Overall, incorporating elements of existing medical education strategies with feedback from the target population and stakeholders about appropriate language seems to be an effective method for creating beneficial, culturally responsive educational materials for the Plain population.

A study on the aptitude of color hue, value, and transparency for geographic relevance encoding in mobile maps

ABSTRACT Depicting the right amount of information on mobile maps is still challenging. With this research we investigate which of the three visual variables hue, value, and transparency optimally directs visual attention to the correct encoding of the geographic relevance of on small displays? We hypothesize that transparency is best suited to let users see symbols in the correct order of high to low relevance and that they intuitively understand this encoding of symbols for value and transparency, but not for hue. In a user study with 27 participants, we tested the suitability of the three visual variables for mobile maps with eye tracking. Results for a perceptual viewing task where no further knowledge or a task was provided, showed no significant differences between the three visual variables for time to first fixation and scanning the symbols in the correct order of relevance. A second search task for the most relevant restaurant, results showed that only transparency seems to reliably encode geographic relevance. “Darker is more” is only partially understood and the traffic light metaphor is unsuitable for encoding ordered geographic relevance on mobile maps. These results are in line with other work and offer guidelines for mobile map design.

Prognostic Understanding in Newly Diagnosed Older Adults with Diffuse Large B Cell Lymphoma (DLBCL) or DLBCL/High Grade B-Cell Lymphoma with MYC and BCL2 rearrangements

Background: Diffuse large B cell lymphoma (DLBCL) is an aggressive lymphoid malignancy that often affects older adults. Therapy is potentially curative, with up to two-thirds of patients cured with chemoimmunotherapy but carries substantial risk of toxicity. Treatment of older adults must balance the potential for cure with the risk of therapy toxicity and intensive healthcare utilization. Therefore, prognostic understanding is a crucial component of informed decision-making for this patient population. Yet, data regarding prognostic understanding in older adults with DLBCL are lacking. Methods: We conducted a prospective study of older adults with aggressive non-Hodgkin lymphomas at two tertiary care hospitals between 9/2020 and 01/2023. Eligible patients were age >= 65 years at time of treatment initiation receiving a combination chemoimmunotherapy. Patients could enroll up until cycle 1 day 8 of therapy. Patients completed questionnaires at baseline that assessed demographics as well as information preferences and prognostic understanding (Prognosis and Treatment Perception Questionnaire) and underwent a comprehensive geriatric assessment. We used descriptive statistics to examine patient beliefs regarding likelihood of cure, the importance of knowing about prognosis, and preferences for information about treatment at baseline. We focused on the subset of patients (N=92) with DLBCL or DLBCL/high grade B-cell lymphoma with MYC and BCL2 translocations (double hit lymphoma) in order to have a relatively homogenous population for prognosis and likelihood of cure. Results: The parent study enrolled 106/163 (65.0%) patients, with 92 patients having DLBCL or double hit lymphoma. 88/92 enrolled patients with DLBCL (95.7%) submitted the prognostic understanding questionnaire. Among DLBCL/double hit lymphoma patients (N=92), the median age was 74 years (range: 66-99), and most were male gender (63%), White race (96.7%), and married/with a life partner (73.9%). 48/91 (52.7%) had an age-adjusted International Prognostic Index of 2 or 3, 30/92 (32.6%) had a Charlson comorbidity index of 2+ (not counting the patients' lymphoma), 14/92 (15.2%) had an Eastern Cooperative Group performance status of 2-4, and 50% (46/92) were frail based on comprehensive geriatric assessment. When asked about their likelihood of cure, 37.5% (33/88) selected >90% chance, 37.5% (33/88) selected 75-90% chance, 20.5% (18/88) selected 50-74% chance, 3.4% (3/88) selected 25-49% chance, and 1.1% (1/88) selected 10-24% chance of cure. Most (88.6%;78/88) patients believed that the primary goal of their current treatment was to cure their cancer, and most (93%; 80/86) believed that was their oncologist's primary goal. When asked if they would prefer a course of treatment focused on extending life as much as possible even if it meant more pain and discomfort versus a plan of care focused on relieving pain and discomfort as much as possible, even if it meant not living as long, 30.0% (26/88) chose extending life as much as possible, 40.9% (36/88) chose relieving pain as much as possible, and 30.0% (26/88) did not know. 94.0% (78/83) reported that they had a conversation about prognosis with their oncologist. The majority (91%; 78/86) felt it was extremely important or very important to know about their prognosis over time, and felt (81.4%; 70/86) they had just the right amount of information about their prognosis. Patients stated that knowing about their prognosis was extremely helpful in making decisions about treatment (75.3%; 61/81), preparing for the future (68.3%; 56/82), maintaining hope (79.3%; 65/82), and coping with the disease (72.5%; 58/80). 74.4% (61/82) said that overall knowing about prognosis was extremely helpful. Conclusion: In this cohort of older adults receiving treatment for DLBCL or double hit lymphoma, the vast majority felt it was important to know prognostic information over time and found that this information was helpful for decision making. Our finding that the majority estimated their likelihood of cure to exceed 75% despite most having aa-IPI scores indicating average cure rates < 60 suggests that older adults with newly diagnosed DLBCL hold overly optimistic views of their prognosis.

Patient decision aids in mainstreaming genetic testing for women with ovarian cancer: A prospective cohort study.

To evaluate patient preference for short (gist) or detailed/extensive decision aids (DA) for genetic testing at ovarian cancer (OC) diagnosis. Cohort study set within recruitment to the Systematic Genetic Testing for Personalised Ovarian Cancer Therapy (SIGNPOST) study (ISRCTN: 16988857). North-East London Cancer Network (NELCN) population. Women with high-grade non-mucinous epithelial OC. A more detailed DA was developed using patient and stakeholder input following the principles/methodology of IPDAS (International Patients Decision Aids Standards). Unselected patients attending oncology clinics evaluated both a pre-existing short and a new long DA version and then underwent mainstreaming genetic testing by a cancer clinician. Appropriate inferential descriptive and regression analyses were undertaken. Satisfaction, readability, understanding, emotional well-being and preference for long/short DA. The mean age of patients was 66 years (interquartile range 11), and 85% were White British ethnicity. Of the participants, 74% found DAs helpful/useful in decision-making. Women reported higher levels of satisfaction (86% versus 58%, p < 0.001), right amount of information provided (76.79% versus49.12%, p < 0.001) and improved understanding (p < 0.001) with the long DA compared with the short DA. There was no statistically significant difference in emotional outcomes (feeling worried/concerned/reassured/upset) between 'short' and 'long' DA; 74% of patients preferred the long DA and 24% the short DA. Patients undergoing treatment (correlation coefficient (coef) = 0.603; 95% CI 0.165-1.041, p = 0.007), those with recurrence (coef = 0.493; 95% CI 0.065-0.92, p = 0.024) and older women (coef = 0.042; 95% CI 0.017-0.066, p = 0.001) preferred the short DA. Ethnicity did not affect outcomes or overall preference for long/short DA. A longer DA in OC patients has higher satisfaction without increasing emotional distress. Older women and those undergoing treatment/recurrence prefer less extensive information, whereas those in remission preferred a longer DA.

Show don’t tell: assessing the impact of co-developed patient information videos in paediatric uveitis

Background/ObjectivesThere is a paucity of online educational content targeting children and young people with uveitis. We evaluated the impact of a co-designed patient education video on subjective and objective understanding of childhood uveitis.Subjects/MethodsCo-designed patient education media were produced in collaboration with the Childhood Uveitis Studies steering group and the Great Ormond Street Hospital Generation R Young People’s Advisory Group and narrated by children. Patients managed within the Uveitis service at GOSH were invited to take part in a pre–post survey, undertaken immediately prior to and following viewing of a patient education video.ResultsForty-three patients participated. These were stratified according to age, duration of disease, and treatment type for analysis. Self-rated knowledge improved across all groups (p = 0.001), particularly in those with a new diagnosis of uveitis (Z = −8.124, p < 0.001). Objective knowledge scores improved across all questions, especially in younger children, those with new disease, and those on steroid only treatment (Z = −3.847, p < 0.001, Z = −3.975, p < 0.001, Z = −3.448, p < 0.001; respectively). Most participants reported the videos to be easy to understand and with the right amount of information. All stated that they learned something new.ConclusionsPatient understanding of disease and treatment is crucial to achieving the best possible outcomes for this chronic, relapsing remitting and potentially blinding disorder. Our findings data shows the potential value of co-designed patient information videos, specifically in our study benefitting younger patients and those recently diagnosed. We suggest that other clinical teams could collaborate fruitfully with patient groups to develop similar videos to target possible misinformation and potentially improve patient outcomes.

Evaluation of an educational program for nurses providing cancer symptom management: The pan-Canadian Oncology Symptom Triage and Remote Support Online Tutorial.

To evaluate the acceptability of the pan-Canadian Oncology Symptom Triage and Remote Support (COSTaRS) open-access online tutorial and its impact on nurses' knowledge and perceived confidence in symptom management. Retrospective pre-/post-test evaluation of nurses who completed the tutorial knowledge test and/or acceptability survey. The tutorial was modeled after the previously evaluated in-person workshop to prepare nurses providing cancer symptom management using COSTaRS practice guides. From 2017-2021, 743 nurses completed the knowledge test, and 749 nurses evaluated the tutorial. Mean knowledge score was 4.4/6 and 83% of participants achieved passing scores. Compared to pre-tutorial, nurses improved their perceived confidence in assessing, triaging, guiding patients in self-care (p<0.001), and ability to use the COSTaRS guides (p<0.001). Nurses rated the tutorial as easy to understand (95%), just the right amount of information (92%), providing new information (75%), overall good to excellent (89%), and would recommend it to others (83%). More than 700 nurses accessed the tutorial. After completion, nurses demonstrated good knowledge and improved perceived confidence in cancer symptom management.

User-centered design of feedback regarding health-related behaviors derived from wearables: An approach targeting older adults and persons living with neurodegenerative disease.

There has been tremendous growth in wearable technologies for health monitoring but limited efforts to optimize methods for sharing wearables-derived information with older adults and clinical cohorts. This study aimed to co-develop, design and evaluate a personalized approach for information-sharing regarding daily health-related behaviors captured with wearables. A participatory research approach was adopted with: (a) iterative stakeholder, and evidence-led development of feedback reporting; and (b) evaluation in a sample of older adults (n = 15) and persons living with neurodegenerative disease (NDD) (n = 25). Stakeholders included persons with lived experience, healthcare providers, health charity representatives and individuals involved in aging/NDD research. Feedback report information was custom-derived from two limb-mounted inertial measurement units and a mobile electrocardiography device worn by participants for 7-10 days. Mixed methods were used to evaluate reporting 2 weeks following delivery. Data were summarized using descriptive statistics for the group and stratified by cohort and cognitive status. Participants (n = 40) were 60% female (median 72 (60-87) years). A total of 82.5% found the report easy to read or understand, 80% reported the right amount of information was shared, 90% found the information helpful, 92% shared the information with a family member or friend and 57.5% made a behavior change. Differences emerged in sub-group comparisons. A range of participant profiles existed in terms of interest, uptake and utility. The reporting approach was generally well-received with perceived value that translated into enhanced self-awareness and self-management of daily health-related behaviors. Future work should examine potential for scale, and the capacity for wearables-derived feedback to influence longer-term behavior change.

The SUMMIT Study: Utilising a written ‘Next Steps’ information booklet to prepare participants for potential lung cancer screening results and follow-up

ObjectivesLow-Dose Computed Tomography (LDCT) screening for lung cancer can result in several potential outcomes of varying significance. Communication methods used in Lung Cancer Screening (LCS) programmes must, therefore, ensure that participants are prepared for the range of possible results and follow-up. Here, we assess perceptions of a written preparatory information booklet provided to participants in a large LCS cohort designed to convey this information. Materials and MethodsAll participants in the SUMMIT Study (NCT03934866) were provided with a results preparation information booklet, entitled ‘The SUMMIT Study: Next Steps’ at their baseline appointment which outlined potential results, their significance, and timelines for follow up. Results from the LDCT scan and Lung Health Check were subsequently sent by letter. Perceptions of this booklet were assessed among participants with indeterminate pulmonary findings when they attended a face-to-face appointment immediately before their three-month interval scan. Specifically, questions assessed the perceived usefulness of the booklet and the amount of information contained in it. Results70.1% (n = 1,412/2,014) participants remembered receiving the booklet at their appointment. Of these participants, 72.0% (n = 1,017/1,412) found it quite or very useful and 68.0% (n = 960/1,412) reported that it contained the right amount of information. Older participants, those from the least deprived socioeconomic quintile and those of Black ethnicity were less likely to report finding the booklet either quite or very useful, or that it contained the right amount of information. Participants who remembered receiving the booklet were more likely to be satisfied with the process of results communication by letter. ConclusionProviding written information that prepares participants for possible LDCT results and their significance appears to be a useful resource and a helpful adjunct to a written method of results communication for large scale LCS programmes.

Regret minimization in online Bayesian persuasion: Handling adversarial receiver's types under full and partial feedback models

In Bayesian persuasion, an informed sender has to design a signaling scheme that discloses the right amount of information so as to influence the behavior of a self-interested receiver. This kind of strategic interaction is ubiquitous in real-world economic scenarios. However, the seminal model by Kamenica and Gentzkow makes some stringent assumptions that limit its applicability in practice. One of the most limiting assumptions is, arguably, that the sender is required to know the receiver's utility function to compute an optimal signaling scheme. We relax this assumption through an online learning framework in which the sender repeatedly faces a receiver whose type is unknown and chosen adversarially at each round from a finite set of possible types. We are interested in no-regret algorithms prescribing a signaling scheme at each round of the repeated interaction with performances close to that of a best-in-hindsight signaling scheme. First, we prove a hardness result on the per-round running time required to achieve no-α-regret for any α<1. Then, we provide algorithms for the full and partial feedback models with regret bounds sublinear in the number of rounds and polynomial in the size of the instance. Finally, we show that, by relaxing the persuasiveness constraints on signaling schemes, it is possible to design an algorithm with a better running time and small regret.

Advance Planning for Technology Use in Dementia Care: Development, Design, and Feasibility of a Novel Self-administered Decision-Making Tool.

BackgroundMonitoring technologies are used to collect a range of information, such as one’s location out of the home or movement within the home, and transmit that information to caregivers to support aging in place. Their surveilling nature, however, poses ethical dilemmas and can be experienced as intrusive to people living with Alzheimer disease (AD) and AD-related dementias. These challenges are compounded when older adults are not engaged in decision-making about how they are monitored. Dissemination of these technologies is outpacing our understanding of how to communicate their functions, risks, and benefits to families and older adults. To date, there are no tools to help families understand the functions of monitoring technologies or guide them in balancing their perceived need for ongoing surveillance and the older adult’s dignity and wishes.ObjectiveWe designed, developed, and piloted a communication and education tool in the form of a web application called Let’s Talk Tech to support family decision-making about diverse technologies used in dementia home care. The knowledge base about how to design online interventions for people living with mild dementia is still in development, and dyadic interventions used in dementia care remain rare. We describe the intervention’s motivation and development process, and the feasibility of using this self-administered web application intervention in a pilot sample of people living with mild AD and their family care partners.MethodsWe surveyed 29 mild AD dementia care dyads living together before and after they completed the web application intervention and interviewed each dyad about their experiences with it. We report postintervention measures of feasibility (recruitment, enrollment, and retention) and acceptability (satisfaction, quality, and usability). Descriptive statistics were calculated for survey items, and thematic analysis was used with interview transcripts to illuminate participants’ experiences and recommendations to improve the intervention.ResultsThe study enrolled 33 people living with AD and their care partners, and 29 (88%) dyads completed the study (all but one were spousal dyads). Participants were asked to complete 4 technology modules, and all completed them. The majority of participants rated the tool as having the right length (>90%), having the right amount of information (>84%), being very clearly worded (>74%), and presenting information in a balanced way (>90%). Most felt the tool was easy to use and helpful, and would likely recommend it to others.ConclusionsThis study demonstrated that our intervention to educate and facilitate conversation and documentation of preferences is preliminarily feasible and acceptable to mild AD care dyads. Effectively involving older adults in these decisions and informing care partners of their preferences could enable families to avoid conflicts or risks associated with uninformed or disempowered use and to personalize use so both members of the dyad can experience benefits.

P1701: A COMPARATIVE STUDY OF THE IMPACT OF COUNTRIES’ HEALTH EXPENDITURE ON THE DIAGNOSIS EXPERIENCES OF PATIENTS WITH LYMPHOMA AND CLL IN EUROPE

Background: Lymphomas are a mixed group of cancers that have a variety of clinical presentations ranging from an indolent course to an aggressive disease. As such, they are often a challenge to diagnose. A long time to diagnosis of lymphoma or CLL can result in increased patient anxiety and may impact patients’ survival and quality of life. In addition, communication with healthcare professionals is a key part of the patient experience at diagnosis as patients will use the information to make sense of their diagnosis and care. Aims: Using data from the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL, this study examines the impact of countries’ health expenditure (as a percentage of the Gross Domestic Product (GDP)) on the diagnostic experiences of patients with lymphoma in Europe. Methods: Globally, there were 11,878 respondents to the LC 2020 GPS, comprised of 9,179 patients and 2,699 caregivers. 4,346 patients responded from 36 European countries. Using the 2019 World Health Organisation (WHO) Global Health Expenditure Database, LC calculated the average percentage of health spending by these European countries’ governments - 8.2%. A comparison was then done between GPS respondents from countries with below-average health expenditure (BA-HE) (n=452) and countries with above-average health expenditure (AA-HE) (n=3894). Demographics of the two groups were examined, and univariate, bivariate and multivariate analyses of questions relating to patients’ diagnosis experience were performed in IBM SPSS v27. Results: Both groups differed significantly in the time taken from patients’ first appointment with a GP about their symptoms to getting a lymphoma or CLL diagnosis (Table 1). 40% of patients in the BA-HE countries received their diagnosis in less than 3 months compared to 51% of patients in the AA-HE countries. Over 10% of patients in both country groups (BA-HE- 14%; AA-HE-13%) reported getting a diagnosis more than 12 months after their first GP visit for their symptoms (Table 1). Regarding information experience at diagnosis, patients in AA-HE countries were 2.5 times more likely to have been told their lymphoma subtype at diagnosis than not remember if they were told their subtype at diagnosis when compared to patients in BA-HE countries (Table 1). Patients in AA-HE countries were also 67% more likely to report that they were given the right amount of information than not given enough information when compared to patients in BA-HE countries (Table 1). Patients in AA-HE countries were 48% less likely to need more information about treatment options and 58% less likely to need more information about support for self-care compared to patients in BA-HE countries. These differences were statistically significant (Table 1). There were no significant differences in both groups in the need for more information in the following areas: psychological support, support for their families, side effects of treatment, diagnosis and what it means, and fertility (Table 1). Image:Summary/Conclusion: Both groups differed in the time taken to get a diagnosis of lymphoma or CLL and in their information experiences at diagnosis. On the other hand, both groups showed an equal need for more information in areas such as psychosocial support and the side effects of treatment. LC advocates for increasing awareness of lymphoma among the general populace and the medical community to accelerate diagnosis. Healthcare providers should also provide patients with credible, understandable information to support the best possible patient experience.

'It's good to have the knowledge and the confidence': Mental health student nurses' views of a medication workshop.

ABSTRACTThe administration of medication in a safe manner is a key nursing role and nursing regulatory bodies mandate that it is part of undergraduate training. However, it has been noted that qualified nursing staff are dissatisfied with the knowledge demonstrated by students. As such, a 2‐day evidence‐based workshop on medication management for final‐year nursing students was facilitated to address knowledge deficits. Content was delivered by academics and practicing nurses. The aims of this study were to evaluate internship mental health student nurses' experiences of a 2‐day medication management workshop. A qualitative descriptive design was adopted. Three focus group interviews were held with student nurses who partook in the workshop. Data were analysed using reflexive thematic analysis. Three themes were identified: Developing Confidence around Medication Management, Reflections on Learning Gained from the Workshop, and Enhancing Awareness and Vigilance of Medication Errors. Overall, participation in the workshop was identified as having a positive impact on students' knowledge, competence, and confidence in relation to becoming a safe practitioner. Students reported that the timing of the workshop – during internship – was appropriate for their knowledge needs. Findings indicate that the right amount of information was delivered by the right people, at the right time, in the right way. This study has highlighted the positive impact of a 2‐day workshop delivered in the final year of mental health student nurse training, on their confidence and competence in the area of medication management. It provides some insight into how a practical collaborative approach to this type of education between academics and clinicians can help students bridge the theory–practice gap.

The reporting of pulmonary nodule results by letter in a lung cancer screening setting

ObjectivesPulmonary nodules are commonly found in Lung Cancer Screening (LCS), with results typically communicated by face-to-face or telephone consultation. Providing LCS on a population basis requires resource efficient and scalabe communication methods. Written communication provides one such method. Here, we assess participant satisfaction with this approach in a LCS setting and investigate characteristics associated with dissatisfaction. Materials and methodsThe SUMMIT Study is a prospective observational cohort study which aims to assess the implementation of Low-Dose Computed Tomography (LDCT) scanning for LCS in a high-risk population and validate a multi-cancer early detection blood test (NCT03934866). Participants with indeterminate pulmonary nodules requiring a three-month interval LDCT were informed of their result by postal letter and given a face-to-face appointment with a study practitioner at their interval LDCT appointment. At this appointment, having previously received their results letter, participants were verbally asked questions to assess their satisfaction with, and preferences for, methods of results communication. Results1,900 participants were included in the analysis. 82.8% (n = 1573) were satisfied with receiving their results by letter, with 2.9% (n = 55) reporting dissatisfaction. 86.3% (n = 1640) stated it was their preferred communication method and 77.3% (n = 1469) reported that their letter contained the right amount of information. Participants from less deprived socioeconomic quintiles were more likely to report that the letter contained insufficient information and individuals aged ≥ 70 years were less likely to do so.Although 13.7% (n = 261) participants had discussed their results with their General Practitioner (GP) prior to the study visit, 83.9% (n = 219) of these participants were satisfied with receiving results by letter, with the same proportion preferring this communication method. ConclusionWe report high participant satisfaction with the reporting of pulmonary nodule results by letter in a LCS setting. We believe this provides a feasible route forward for large-scale screening programmes.

How product information and source credibility affect consumer attitudes and intentions towards innovative food products

ABSTRACT Innovative foods often offer consumers an important contribution to their quality of life. Nevertheless, consumers often encounter technology-based food innovations with a certain degree of scepticism. To counteract this scepticism, information about the innovative product is often communicated. However, two elements must be taken into account to ensure that the given information does not reinforce the scepticism: first, the right amount of information and, second, the source of information and its credibility. In order to be able to implement these elements effectively in a communication strategy, this paper uses two online experiments and analyses of variance to investigate the impact of different amounts of information and different sources of information on consumers’ product evaluations (i.e., affective attitude, cognitive attitude, and behavioural intention). Study 1 found that more information does not always lead to better product evaluations. Furthermore, the results of study 2 show that independent or scientific sources of information are perceived as more credible and tend to lead to a higher product evaluation. Moreover, higher credibility measured by attractiveness, trustworthiness and expertise leads to a significantly higher product evaluation. From these results, communication strategies can be designed that gain higher consumer acceptance for technology-based food innovations.

Metrics, Explainability and the European AI Act Proposal

On 21 April 2021, the European Commission proposed the first legal framework on Artificial Intelligence (AI) to address the risks posed by this emerging method of computation. The Commission proposed a Regulation known as the AI Act. The proposed AI Act considers not only machine learning, but expert systems and statistical models long in place. Under the proposed AI Act, new obligations are set to ensure transparency, lawfulness, and fairness. Their goal is to establish mechanisms to ensure quality at launch and throughout the whole life cycle of AI-based systems, thus ensuring legal certainty that encourages innovation and investments on AI systems while preserving fundamental rights and values. A standardisation process is ongoing: several entities (e.g., ISO) and scholars are discussing how to design systems that are compliant with the forthcoming Act, and explainability metrics play a significant role. Specifically, the AI Act sets some new minimum requirements of explicability (transparency and explainability) for a list of AI systems labelled as “high-risk” listed in Annex III. These requirements include a plethora of technical explanations capable of covering the right amount of information, in a meaningful way. This paper aims to investigate how such technical explanations can be deemed to meet the minimum requirements set by the law and expected by society. To answer this question, with this paper we propose an analysis of the AI Act, aiming to understand (1) what specific explicability obligations are set and who shall comply with them and (2) whether any metric for measuring the degree of compliance of such explanatory documentation could be designed. Moreover, by envisaging the legal (or ethical) requirements that such a metric should possess, we discuss how to implement them in a practical way. More precisely, drawing inspiration from recent advancements in the theory of explanations, our analysis proposes that metrics to measure the kind of explainability endorsed by the proposed AI Act shall be risk-focused, model-agnostic, goal-aware, intelligible, and accessible. Therefore, we discuss the extent to which these requirements are met by the metrics currently under discussion.