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BACKGROUND: Sudden Unexpected Death in Epilepsy (SUDEP) is a complication of epilepsy responsible for approximately 1 death per 1000 patients. The literature has demonstrated minimal SUDEP disclosure between providers and patients, although patients have consistently reported desire to know about their risk. However, the majority of these studies has been conducted in Caucasian populations which did not seek to include lower socio-economic class individuals. Thus, the purpose of this study is to determine patient and provider attitudes regarding SUDEP disclosure at a community health center serving minority, predominantly Hispanic, patients. METHODS: This cross-sectional study utilized surveys distributed to patients with epilepsy (n = 20), patients with diabetes (n = 20), those with no chronic disease (n = 20) and providers (n = 13). Online surveys were distributed to 13 providers whereas phone surveys were conducted for patients with epilepsy. In-person surveys were distributed to patients with diabetes and no chronic disease to serve as comparison groups. Surveys were available in both Spanish and English. Patient surveys consisted of demographic information and questions evaluating their current knowledge and preferences regarding disclosure of a potentially fatal disorder. RESULTS: Twenty patients with epilepsy, 20 patients with diabetes, 20 patients without chronic diseases, and 9 providers responded to the online or in-person surveys. Of the patients with epilepsy, 90 % (n = 18/20) were Hispanic which was not significantly different from the comparison groups. 45 % (n = 9/20) believed they had a higher rate of death due to epilepsy with only 3 patients having heard of SUDEP prior to the survey, and only 1 learning this from a physician. All patients wanted to know everything there was to know regarding their condition, including a higher risk of unexpected death. Most patients (85%, n = 17/20) believe everyone with epilepsy should be informed of SUDEP and this information should come from their provider (90 %, n = 18/20). Results were similar for both comparison groups, except patients with diabetes unanimously desired to know about a theoretical risk of death at the time of diagnosis. Of the providers, 66.7% (n = 6/9) never discuss SUDEP, with the remaining 33.3% (n = 3/9) discussing SUDEP rarely. The primary reason for not discussing SUDEP was not knowing enough about it (66.7%, n = 5/9). CONCLUSION: Almost all patients with epilepsy had no knowledge of SUDEP, yet desired to know this information within the first two visits. Providers in the primary care setting rarely discuss SUDEP, most often due to lack of knowledge. These results are very similar to those found in mainly white, higher socioeconomic populations and indicate that race should not be a barrier to SUDEP disclosure.

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The coronavirus disease 2019 (COVID-19) pandemic has driven a broader adoption of telemedicine (TM). We aim to describe adult congenital heart disease (ACHD) patient experiences with TM and explore factors associated with positive attitude toward future TM visits. This is a cross-sectional, single-center study in an outpatient ACHD clinic from February to June, 2022. Between-group comparisons were made using Wilcoxon-Rank Sum, Chi-Square, or Fisher-Exact tests. Univariate logistic regression was performed for variables that could correlate with a "positive" attitude toward future TM visits. Significance was determined using an alpha level of 0.05. Of 262 patients (median age 33 years, 55% female, 81% White), 115 (44%) had a prior TM visit and 110 (96%) reported a positive experience. There were 64 (24%) with a positive attitude toward future TM visits. Concerns include lack of cardiac testing and limited quality of visit. Patients with visits every 3-6 months (Odds Ratio [OR] 2.44; p < 0.01) and prior TM visit (OR 1.89; p = 0.03) had higher odds of a positive attitude toward future TM, whereas males had lower odds (OR 0.53; p = 0.04). Age, annual income, disease complexity, distance from clinic, and employment status were not associated. There is high rate of satisfaction with TM among ACHD patients but only one-quarter indicated interest in using TM in the future. Factors associated with interest in TM visits are identified, and together with patient feedback, can be used to understand potential role of TM for the ACHD population in the post-pandemic era.

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BACKGROUND: Increasing patient loads, healthcare inflation and ageing population have put pressure on the healthcare system. Artificial intelligence and machine learning innovations can aid in task shifting to help healthcare systems remain efficient and cost effective. To gain an understanding of patients' acceptance toward such task shifting with the aid of AI, this study adapted the Unified Theory of Acceptance and Use of Technology 2 (UTAUT2), looking at performance and effort expectancy, facilitating conditions, social influence, hedonic motivation and behavioural intention. METHODS: This was a cross-sectional study which took place between September 2021 to June 2022 at the National Heart Centre, Singapore. One hundred patients, aged ≥ 21 years with at least one heart failure symptom (pedal oedema, New York Heart Association II-III effort limitation, orthopnoea, breathlessness), who presented to the cardiac imaging laboratory for physician-ordered clinical echocardiogram, underwent both echocardiogram by skilled sonographers and the experience of echocardiogram by a novice guided by AI technologies. They were then given a survey which looked at the above-mentioned constructs using the UTAUT2 framework. RESULTS: Significant, direct, and positive effects of all constructs on the behavioral intention of accepting the AI-novice combination were found. Facilitating conditions, hedonic motivation and performance expectancy were the top 3 constructs. The analysis of the moderating variables, age, gender and education levels, found no impact on behavioral intention. CONCLUSIONS: These results are important for stakeholders and changemakers such as policymakers, governments, physicians, and insurance companies, as they design adoption strategies to ensure successful patient engagement by focusing on factors affecting the facilitating conditions, hedonic motivation and performance expectancy for AI technologies used in healthcare task shifting.

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Our study investigated the association between patients' willingness to have medications deprescribed and medication adherence. This longitudinal substudy of the 'Optimizing PharmacoTherapy In the Multimorbid Elderly in Primary CAre' (OPTICA) trial, a cluster randomized controlled trial, took place in Swiss primary care settings. Participants were aged ≥65 years and over, with ≥3 chronic conditions and ≥5 regular medications. At baseline, the 'revised Patient Attitudes Towards Deprescribing' (rPATD) questionnaire was measured. The A14-scale measured adherence (self-report) at the 12-month follow-up. Multilevel linear regression analyses adjusted for baseline variables were performed. Of the 298 participants, 45% were women, and the median age was 78. Participants reported a high level of adherence and willingness to have medications deprescribed. We did not find evidence for an association between patients' willingness to deprescribe and medication adherence. Further research is needed to explore the relationship between these concepts and to inform collaborative decisions about medicines in the context of polypharmacy.

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BACKGROUND: Individuals with autism with intellectual disabilities (ID) are increasingly undergoing genetic testing, posing questions of how parents view/respond to such results. METHODS: Twenty-eight parents whose offspring had received genetic diagnoses of de novo pathogenic variants associated with autism were interviewed. RESULTS: Genetic diagnoses parents receive concerning their offspring's autism/intellectual disabilities can be 'double-edged' in several ways, having advantages, but also certain disadvantages and limitations. Benefits were medical/scientific (e.g., ending diagnostic odysseys and potentially contributing to research), emotional (e.g., relief, peace of mind and less self-blame), cognitive, social (e.g., validation and confirmation with others - it's 'not just in our head') and financial (e.g., estate planning), now and in the future (e.g., preparing for possible future symptoms, development and availability of treatment and setting realistic expectations). Limitations included a lack of medical treatments related to the genetic diagnosis, a sense of finality and heightened uncertainties which can increase anxieties (e.g., concerning additional symptoms associated with genetic diagnoses and offspring's ability to live independently in the future). Overall, parents were glad to receive the results, seeing the pros outweighing the cons. Parents responded to these tensions in various ways, having mixed feelings, recognizing the trade-offs and/or focusing on their offspring's present needs. Factors such as age of offspring at receipt of genetic diagnosis, parent's scientific background and prior views and degrees of self-blame affected these responses. CONCLUSIONS: These data, the first to examine how parents perceive genetic diagnoses received for offspring with autism and ID through whole exome/whole genome sequencing, highlight practical medical and psychological benefits as well as limitations. These findings thus have important implications for future education, engagement of families and research. Providers should be aware of these issues, to inform and assist families, who are considering such testing, about these potential pros and cons and responses.

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BACKGROUND: Long-term oxygen therapy (LTOT) can increase survival time and relieve symptom burden in patients with COPD and chronic hypoxemia. The Department of Respiratory Medicine at Odense University Hospital invites patients with LTOT and COPD to the out-patient clinic for treatment evaluation every 6 months to regulate or terminate treatment and support patients' treatment adherence. The out-patient clinic, however, experiences many absences or cancellations from patients. For that reason, patients were offered virtual consultation as an alternative to physical attendance. This study was initiated to uncover reasons for absences and the patients' experiences of virtual consultation to promote a more patient-centered clinical practice for patients with COPD and LTOT. METHODS: A qualitative study encompassing semi-structured interviews with 20 subjects was conducted in the winter of 2021. The subjects had tried or been given the opportunity of virtual consultation. Data were analyzed inspired by Kvale and Brinkmann focusing on the subject's perspectives on virtual consultation. RESULTS: The analysis resulted in 3 main themes: limitations and vulnerabilities, independence and quality of life, and personal strategies. Subjects expressed that everyday life with LTOT and COPD was characterized by limited resources in terms of energy, oxygen, and time. LTOT was perceived as a necessary means to maintain a sense of independence and quality of life. However, LTOT also meant additional limitations due to cumbersome equipment and feelings of isolation. Most subjects considered the virtual consultation to be oxygen-, energy-, and time-preserving, as it meant avoiding stressful transportation and handling of oxygen cylinders, COVID-19 exposure, waiting time, and not having to involve others for help. CONCLUSIONS: The subjects' perspective showed that follow-up on LTOT as a virtual consultation was considered a valuable offer. The chosen method was found to be relevant in uncovering subjects' attitudes toward clinical practice procedures.

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Background Organ transplantation is a life-saving therapy for patients with end-stage organ failure. However, the demand for organs far exceeds their availability, leading to longer waiting times and increased mortality rates. Pakistan faces a similar situation, with a shortage of organ donors and several barriers to therapeutic organ donation, including cultural, religious, and political ones. Objective The objective of this study was to understand the barriers and enablers to joining the national organ donation registry among patient populations at a tertiary care hospital in Peshawar, Pakistan. The findings can then guide targeted educational campaigns to improve the state of therapeutic organ transplants in the country. Methods A descriptive, cross-sectional study was conducted at the Outpatient Departments of Lady Reading Hospital, Peshawar, targeting all patients and visitors aged 18 to 60 who presented to the outpatient departments of the hospital. A modified and validated questionnaire was used to collect data, which were analyzed using Statistical Package for Social Sciences (SPSS) version 26. Results: The study analyzed the attitudes of 342 individuals, among which 82.18% had not heard about Pakistan's Organ Donation Registry, 58.09% agreed with organ donation, and 23.68% suggested they would like to join the registry someday. Religious beliefs and the lack of knowledge about the laws related to organ donation stood out as statistically significant barriers to joining the national organ donation registry of Pakistan (p<0.05). The study also found that the willingness to donate was significantly higher among those who themselves encouraged organ donation and were willing to do so if the country's system were to support it (p<0.05). Conclusion The majority of participants had not heard of the organ donation registry, and a lack of knowledge about the legal framework and religious beliefs were significant barriers to joining the registry. This is hindering the growth of therapeutic organ transplantation in Pakistan. In addition, the willingness to donate was higher among those who supported organ donation and believed in its benefits. Increasing awareness and promoting a culture of organ donation in Pakistan can help address the shortage of organ donors and improve the state of therapeutic organ transplantation in the country.

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BACKGROUND: The overall burden of disease in persons with haemophilia continues to be high despite the latest advancements in therapeutics. Clinical trials testing prenatal treatments for several genetic disorders are underway or are recruiting subjects, attesting to the much-needed change in paradigm of how patients with monogenic disorders can be treated. Here we investigate the overall attitude towards prenatal diagnosis, preferences on types of prenatal therapies for haemophilia, the level of 'acceptable' risk tolerated, and which social and moral pressures or disease personal experiences may predict willingness of individuals to consider foetal therapy in a future pregnancy. RESULTS: A multidisciplinary team designed the survey, and the study was carried out using REDCap, and publicized through the National Haemophilia Foundation. Subjects ≥18 years of age were eligible to participate in the study. We assessed participants' attitudes towards prenatal therapy and their level of 'acceptable' risk towards the procedure and therapy. The survey was completed by 67 adults, the majority females. Respondents were willing to undergo prenatal diagnosis, and their main concerns related to the well-being of the pregnant woman and the foetus regarding lasting therapeutic efficacy, side effects of the therapy, and procedural risks, but they were likely to accept a wide range of prenatal therapeutic options, particularly if the foetal therapy proved to be long-lasting and safe. CONCLUSIONS: These data demonstrate the willingness of persons with haemophilia, and the haemophilia community, to explore new treatment options beyond the currently offered approaches.

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BACKGROUND: people living with cognitive impairment commonly take multiple medications including potentially inappropriate medications (PIMs), which puts them at risk of medication related harms. AIMS: to explore willingness to have a medication deprescribed of older people living with cognitive impairment (dementia or mild cognitive impairment) and multiple chronic conditions and assess the relationship between willingness, patient characteristics and belief about medications. METHODS: cross-sectional study using results from the revised Patients' Attitudes Towards Deprescribing questionnaire (rPATDcog) collected as baseline data in the OPTIMIZE study, a pragmatic, cluster-randomised trial educating patients and clinicians about deprescribing. Eligible participants were 65+, diagnosed with dementia or mild cognitive impairment, and prescribed at least five-long-term medications. RESULTS: the questionnaire was mailed to 1,409 intervention patients and 553 (39%) were returned and included in analysis. Participants had a mean age of 80.1 (SD 7.4) and 52.4% were female. About 78.5% (431/549) of participants said that they would be willing to have one of their medications stopped if their doctor said it was possible. Willingness to deprescribe was negatively associated with getting stressed when changes are made and with previously having a bad experience with stopping a medication (P < 0.001 for both). CONCLUSION: most older people living with cognitive impairment are willing to deprescribe. Addressing previous bad experiences with stopping a medication and stress when changes are made to medications may be key points to discuss during deprescribing conversations.

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INTRODUCTION: Certain sociodemographic characteristics (e.g., older age) have previously been identified as barriers to patients' participation preference in shared decision-making (SDM). We aim to demonstrate that this relationship is mediated by the perceived power imbalance that manifests itself in patients' negative attitudes and beliefs about their role in decision-making. METHODS: We recruited a large sample (N = 434) of outpatients with a range of urological diagnoses (42.2% urooncological). Before the medical consultation at a university hospital, patients completed the Patients' Attitudes and Beliefs Scale and the Autonomy Preference Index. We evaluated attitudes as a mediator between sociodemographic factors and participation preference in a path model. RESULTS: We replicated associations between relevant sociodemographic factors and participation preference. Importantly, attitudes and beliefs about one's own role as a patient mediated this relationship. The mediation path model explained a substantial proportion of the variance in participation preference (27.8%). Participation preferences and attitudes did not differ for oncological and nononcological patients. CONCLUSION: Patients' attitudes and beliefs about their role determine whether they are willing to participate in medical decision-making. Thus, inviting patients to participate in SDM should encompass an assessment of their attitudes and beliefs. Importantly, negative attitudes may be accessible to change. Unlike stable sociodemographic characteristics, such values are promising targets for interventions to foster more active participation in SDM. PATIENT OR PUBLIC CONTRIBUTION: This study was part of a larger project on implementing SDM in urological practice. Several stakeholders were involved in the design, planning and conduction of this study, for example, three authors are practising urologists, and three are psychologists with experience in patient care. In addition, the survey was piloted with patients, and their feedback was integrated into the questionnaire. The data presented in this study is based on patients' responses. Results may help to empower our patients.

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Background: For individuals managing diabetes, the administration of glucagon for severe hypoglycemia can be lifesaving, yet, until recently, there were no easy-to-use devices for these stressful emergencies. New products have emerged to meet this need, including nasal glucagon (NG) and auto-injector glucagon (AI). This study evaluated the psychometric properties of a new measure, the Glucagon Device Attitudes Questionnaire (GDAQ), in assessing attitudes toward NG and AI from the perspectives of persons with diabetes on insulin (PWDs), caregivers, and acquaintances. Methods: Developed based on qualitative research, the GDAQ consists of 38 rating items for each device and 16 direct-elicitation of attitudes of device relative to each other. It was administered to participants via a cross-sectional online survey. Twenty-six rating items were included in principal component analysis and confirmatory factor analysis. Items comprising each factor were averaged to form scales. Additionally, 12 direct elicitation items were averaged to form an overall "Attitudes" scale. Reliability and validity analyses were conducted. Descriptive statistics were provided for the rating items not included in the factor analysis. Results: A total of 405 PWDs, 313 caregivers, and 305 acquaintances participated. Three factors were identified: "Prepared and Protected" (7 items), "Hesitation" (12 items), and "Device Perceptions by Others" (7 items); factor loadings ranged from 0.13 to 0.92, 0.50 to 0.89, and 0.16 to 0.92, respectively. Cronbach's alpha for the four scales ranged from 0.76 to 0.96. Correlations of the scales with their global item ranged from 0.30 to 0.90. The items outside of the factor analysis showed good distribution in responses and differentiation between the two devices. Discussion: This study supports the validity and reliability of the GDAQ, which successfully conceptualizes attitudes towards devices for administering glucagon among different respondent groups. Use of the GDAQ can help guide the development and testing of new glucagon drug/device combinations.

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Objectives: To identify how perceptions, attitudes, and beliefs towards pseudotherapies, health, medicine, and the public health system influence the pseudotherapy use in Spain. Methods: We carried out a cross-sectional study using the Survey of Social Perception of Science and Technology-2018 (5,200 interviews). Dependent variable: ever use of pseudotherapies. Covariables: attitude towards medicine, health and public health system; perceived health; assessment of the scientific character of homeopathy/acupuncture. The association was estimated using prevalence ratios obtained by Poisson regression models. The model was adjusted for age and socioeconomic variables. Results: Pseudotherapy use was higher in women (24.9%) than in men (14.2%) (p < 0.001). The probability of use in men (p < 0.001) and women (p < 0.001) increases with the belief in pseudotherapies' usefulness. Among men, a proactive attitude (reference: passive) towards medicine and health (RP:1.3), and a negative (reference: positive) assessment of the quality of the public health system increased use-probability (RP:1.2). For women, poor health perceived (referencie: good) increased likelihood of use (RP:1.2). Conclusion: Pseudotherapy use in Spain was associated with confidence in its usefulness irrespective of users' assessment of its scientific validity.

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BACKGROUND: Understanding public and patient attitudes to clinical research is paramount to successful recruitment. The COVID-19 pandemic has led to additional hurdles in achieving this. Our aim is to understand the current factors and attitudes towards clinical trial participation in order to assist in recruitment to clinical trials. METHODS: We conducted face-to-face interviews with patients in the outpatient department at a tertiary eye hospital facilitated by a 32-item questionnaire developed by the research team. Patient characteristics were correlated with their responses, in addition to qualitative thematic text analysis. RESULTS: A total of 53 patients were interviewed. Forty per cent indicated that they would be willing to participate in clinical research in the current climate. General motivating factors for involvement in research included personal gain, altruism and contribution to innovation. Factors limiting participation included concerns regarding own safety, inconvenience, accessibility and lack of benefit. 22.6% of participants felt that the COVID-19 pandemic has changed their outlook on research. These were categorised into positive (increased awareness of the importance and need for research, altruism) and negative (increased anxiety, need to minimise exposure to the hospital environment) influences. CONCLUSIONS: Factors influencing patients' decisions to participate in trials are similar to those observed prior to COVID-19 but with an increased focus on the environment the research is conducted in. The COVID-19 pandemic has had positive and negative impacts on patient attitudes towards research. Trial design, with a particular focus on setting and safety measures, in reassuring patients is increasingly important.

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Introduction: Apt treatment scheming and decision-making are essential when fabricating dental prostheses that satisfy the patients' needs and have acceptable lifetime and function. As a result, not only do the dentist's technical skills and clinical judgment matter, but the patients' attitude toward treatment also matters when it comes to posttreatment contentment. Aim: The goal of this trial is to contemplate the elements that impact patients' decision-making and dental prosthesis choice. Materials and Procedures: A cross-sectional survey was done to examine patients' attitudes toward tooth auxiliary. This survey was organized using a prevalidated questionnaire that included each patient's demographic information, either they accept or deny the dentist's treatment plan, and a closed-ended multiple-choice question describing the reasons. Results: The data were statistically analyzed using the Chi-square test with a significance threshold of P = 0.05. The top five reasons were excessive costs (35%), fear of dental treatment (20%), lack of need (15%), unwillingness to undergo preprosthetic therapy (11%), reliance (6%), and other factors (13%). Conclusion: The majority of patients in the sample population analyzed denied the offered treatment plan and agreed to take the substitute. The most prevalent reason for this rejection is excessive spending.

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Social media is an outlet for patients to share medical experiences with a large audience. However, the impact of such content on individual patient treatment decisions has yet to be fully explored. We characterized patient experiences posted on social media surrounding biologic use for skin psoriasis. We analyzed content from YouTube, Instagram, and TikTok and identified patient experiences with a variety of biologics, most commonly Humira (20.7%), Cosentyx (14.0%), and Stelara (14.0%). The biologic was described as burdensome in about half of all videos/posts (46.4%), and the most commonly cited reasons included adverse effects or abnormal blood tests (12.8%), cost or insurance issues (11.7%), lack or loss of efficacy (11.7%), and pain with injection or injection site reaction (11.7%). Nevertheless, the majority (60.9%) of videos/posts reported an overall positive experience with a biologic for their skin psoriasis, which may inspire reluctant patients to try a biologic recommended by their physician.

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Aim: The aims of this study were to explore factors that influence initiation and continuation of statin therapy. Patients & methods: Mixed-method design employed with 73 patients completing surveys and 14 patients participating in semi-structured interviews. Results: When lower total cholesterol is achieved, patients' views are favorable while views of statin therapy diminish among those with higher total cholesterol values. All patients are concerned with adverse events including the potential for developing diabetes. However, overall patients believe the benefits of statins outweigh the risk of diabetes. Conclusion: Barriers remain that prevent patients from achieving cholesterol goals and maintaining or initiating statin therapy. Effective strategies to provide accurate information about the risks and benefits of statin therapy, and implementation of shared decision-making to improve medication adherence and persistence are needed.

The statin medications are commonly prescribed agents used to lower cholesterol and prevent cardiovascular events, such as heart attacks. Although these medications are prescribed often, researchers and clinicians have limited understanding regarding the influences involving patients' decision to start or stop a statin. This study was conducted to gain insight on patients' beliefs and attitudes involving statin therapy. We observed that when patients' had lower cholesterol values, favorable views of statins were more common, while views became less favorable when cholesterol levels were higher. All patients were concerned about statin-associated side effects; but overall believed that the benefits of statins outweighed the risks. It is essential that patients' are provided accurate information from their healthcare team regarding the advantages and disadvantages of statin therapy. Such discussions may allow patients to make more informed decisions and help with continuing a statin long term.

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BACKGROUND: Inappropriate prescribing of medications and polypharmacy among older adults are associated with a wide range of adverse outcomes. It is critical to understand the attitudes towards deprescribing-reducing the use of potentially inappropriate medications (PIMs)-among this vulnerable group. Such information is particularly lacking in low - and middle-income countries. METHODS: In this study, we examined Chinese community-dwelling older adults' attitudes to deprescribing as well as individual-level correlates. Through the community-based health examination platform, we performed a cross-sectional study by personally interviews using the revised Patients' Attitudes Towards Deprescribing (rPATD) questionnaire (version for older adults) in two communities located in Suzhou, China. We recruited participants who were at least 65 years and had at least one chronic condition and one prescribed medication. RESULTS: We included 1,897 participants in the present study; the mean age was 73.8 years (SD = 6.2 years) and 1,023 (53.9%) were women. Most of older adults had one chronic disease (n = 1,364 [71.9%]) and took 1-2 regular drugs (n = 1,483 [78.2%]). Half of the participants (n = 947, 50%) indicated that they would be willing to stop taking one or more of their medicines if their doctor said it was possible, and 924 (48.7%) older adults wanted to cut down on the number of medications they were taking. We did not find individual level characteristics to be correlated to attitudes to deprescribing. CONCLUSIONS: The proportions of participants' willingness to deprescribing were much lower than what prior investigations among western populations reported. It is important to identify the factors that influence deprescribing and develop a patient-centered and practical deprescribing guideline that is suitable for Chinese older adults.

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OBJECTIVE: Although there is growing interest in medically authorized cannabis for chronic pain, little is known about patients' perspectives. We explored perceptions of people living with chronic pain regarding benefits and concerns surrounding their use of cannabis for therapeutic purposes. SETTING: A hospital-based clinic in Hamilton and two community-based interdisciplinary pain clinics in Burlington, Ontario, Canada. METHODS: In this qualitative descriptive study, we conducted semi-structured interviews with 13 people living with chronic pain who used cannabis therapeutically, living in Ontario, Canada. We used thematic analysis, with data collection, coding, and analysis occurring concurrently. RESULTS: People living with chronic pain reported important benefits associated with use of cannabis for therapeutic purposes, including reduced pain, improved functionality, and less risk of harms compared to prescription opioids. Most patients also acknowledged harms, such as grogginess and coughing, and there was considerable variability in patient experiences. Financial costs and stigma were identified as important barriers to use of cannabis. CONCLUSION: Evidence-based guidance that incorporates patients' values and preferences may be helpful to inform the role of cannabis in the management of chronic pain.

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INTRODUCTION: Understanding clinical trial experiences can illuminate opportunities to optimize trial design and management, with potential benefits for recruitment and retention. This study sought to better understand clinical trial participant experiences and attitudes within spinal muscular atrophy (SMA), and how the evolving treatment landscape and participant characteristics may predict attitudes. METHODS: A survey was developed following a review of published literature and discussions with caregivers of SMA trial participants. This was distributed via email to known trial participants in Cure SMA's database, announcements in Cure SMA's newsletter, and emails to SMA clinical trial principal investigators. RESULTS: Seventy complete surveys reflecting unique clinical trial experiences were included in analysis. Responses revealed positive attitudes about clinical trial management overall. Top motivators for trial participation included clinical benefit, investigational drug access, and the opportunity to help others. Top concerns were safety, whether benefits would justify risks, and concerns about pain accompanying tests. The greatest stressors were fear of pain, adverse event concerns, and challenges managing medical complications of SMA. Top benefits of trial participation were hope for a better future, helping others, and relationships with the study team. In regression analysis, participant gender, age, and race all emerged as significant predictors (p < 0.05) of motivators, concerns, stressors, and benefits, as did respondent type, knowledge about SMA, distance to the trial site, and treatment era. Top recommendations for improving study management all related to receiving more information. CONCLUSION: This research provides new perspective on patient experiences in SMA clinical trials. It underscores the importance of information and efforts to anticipate and accommodate participant needs. These findings may inform study design and interactions with research participants. They may become especially important in supporting recruitment and retention as more treatment options become available.

Clinical trials can be stressful experiences for patients and their caregivers, especially when participants are affected by serious diseases. By understanding trial participants' attitudes and experiences, researchers may be better able to accommodate their interests when designing and conducting research studies. This study sought insight into attitudes and experiences of spinal muscular atrophy (SMA) clinical trial participants by surveying people who participated in SMA clinical trials in the USA. The data used in analysis reflected 70 unique clinical trial experiences. Survey responses revealed positive attitudes about clinical trial management overall. Top motivators for trial participation included clinical benefit, investigational drug access, and the opportunity to help others. Top concerns were safety, whether benefits would justify risks, and concerns about pain accompanying tests. The greatest stressors were fear of pain, adverse event concerns, and challenges managing medical complications of SMA. Top benefits of trial participation were hope for a better future, helping others, and relationships with the study team. Whether or not specific motivators, concerns, stressors, and benefits were important was predicted by participant gender, age, and race, as well as respondent type (participant or caregiver), knowledge about SMA, distance to the trial site, and treatment era. Top recommendations for improving study management all related to receiving more information. This research provides new perspective on patient experiences in SMA clinical trials, and may be used to inform future study design and interactions with research participants.

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Globalisation and migration trends are reflected in emergency departments (EDs), which increasingly care for patients and employ staff from diverse cultural and/or ethnic backgrounds. EDs are busy, pressured and unpredictable environments where effective communication with patients and families is challenging at the best of times. This is compounded by language and cultural barriers experienced by patients and families whose background differs from the prevailing culture. Cultural differences and language comprehension may also be a challenge for overseas nurses recruited to the ED, who may need support from colleagues and organisations. ED nurses therefore need to be competent in intercultural communication. This involves combining optimal interpersonal skills with cultural awareness, knowledge and sensitivity.

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