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Why you should read this article: • To recognise the factors that may influence older people’s concepts of self-care • To consider how you could use a reflective framework to explore patients’ beliefs, values and attitudes • To contribute towards revalidation as part of your 35 hours of CPD (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers). Person-centred care is based on the notion that patients’ independence and dignity is sustained during the care planning process. Negotiating person-centred care with the older person involves exploring their self-care beliefs, values and attitudes. This article discusses patient beliefs, values and attitudes in the context of self-care and suggests ways in which nurses might explore these as a collaborative enquiry. The author also describes the use of a simple reflective framework as a starting point for engaging in this exploration. [ABSTRACT FROM AUTHOR]

BackgroundLysosomal storage diseases (LSDs) are inherited metabolic disorders that may lead to severe multi-organ disease. Current ERTs are limited by anti-drug antibodies, the blood-brain barrier, and early disease onset and progression before ERT is started. We have opened a phase I clinical trial of enzyme replacement therapy (ERT) for fetuses with LSDs (NCT04532047). We evaluated the attitudes of parents and patients with LSDs towards fetal clinical trials and therapies.MethodsA multidisciplinary team designed a survey which was distributed by five international patient advocacy groups. We collected patients' demographic, diagnostic, and treatment information. Associations between respondent characteristics and attitudes towards fetal therapies/trials were analyzed using multivariate ordinal logistic regression.ResultsThe survey was completed by 181 adults from 19 countries. The majority of respondents were mothers from the United States. The most common diseases were MPS1 (26%), MPS3 (19%), and infantile-onset Pompe (14%). Most patients (88%) were diagnosed after birth, at a median of 21 months. Altogether, 65% of participating patients and children of participants had received ERT, 27% a stem cell transplant, and 4% gene therapy. We found that half (49%) of respondents were unlikely to terminate a future affected pregnancy, 55% would enroll in a phase I clinical trial for fetal ERT, and 46% would enroll in a fetal gene therapy trial. Respondents who received postnatal ERT were significantly more likely enroll in a trial for fetal ERT or gene therapy (ERT OR 4.48, 95% CI 2.13-9.44, p

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. [ABSTRACT FROM AUTHOR]

The aim was to investigate patient attitudes regarding psychiatrist attire, sociodemographic characteristics, and mutual addressing. A total of 340 both inpatients and outpatients at a psychiatric hospital in Croatia were assessed about their preferences regarding psychiatrist wearing a name badge, gender, age, ways of mutual addressing, and attire. The majority of patients, inpatients significantly more often, thought that a psychiatrist should wear a name badge. Female patients preferred female psychiatrist more than male and vice versa. Inpatients also preferred female psychiatrist. Patients with affective and anxiety disorder were more likely to choose female psychiatrists, patients with addiction more often had no preferences, and patients with psychotic disorders preferred male psychiatrists. Younger patients preferred younger psychiatrists and inpatients preferred psychiatrists in the 35-50 age group. Patients with anxiety disorder more often opted for psychiatrists older than 50. Patients with anxiety disorders would rather be addressed by their first name, whereas patients with psychotic disorders more often preferred to be addressed by their title and surname. Patient attitude about how they should address the psychiatrist did not differ according to any of the variables assessed. Most patients thought that white coat was most appropriate attire for psychiatrist and psychiatrists in white coat were considered most competent, empathic, accessible, and friendly in comparison with psychiatrists wearing suits, smart attire, or casual clothing. Other than preference for white coat, patient preferences significantly differed according to their sociodemographic characteristics and diagnosis. Psychiatrists should bear that in mind to establish better rapport in doctor-patient relationship.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Standardized assessment and progress monitoring are an important part of evidence-based practice. Despite efforts to embed standardized assessments into routine practice, they remain underutilized by practitioners. This underutilization has been attributed to a variety of factors, one of which is the concern that standardized assessments are a burden for individuals to complete. This study sought to gather the first descriptive data on substance users' attitudes toward the use of standardized assessments as part of an initial assessment and for progress monitoring. Seventy-one Australian substanceusing individuals (54.9% male) recruited via online forums, practitioner networks, and advertisements placed in relevant treatment services completed an online survey. The majority of substance-using individuals believed standardized initial assessment and progress monitoring measures to be beneficial to fill out, not burdensome, and valuable in monitoring treatment progress. Individuals would also prefer to choose the administration format of assessment (e.g. computer, mobile device, pencil-and-paper). Findings challenge the assumption that including standardized assessments in routine practice will be considered too burdensome by individuals who use substances, and offer insights that can inform patient-centred implementation. [ABSTRACT FROM AUTHOR]

Aim: With organ insufficiency, specifically kidney failure, becoming a prevalent health concern, renal transplantation emerges as a life-altering solution. However, the scarcity of donor organs calls for an exploration into patients' attitudes towards organ donation. This research aims to understand these attitudes and their underlying reasons, intending to reveal the factors that influence organ donation rates. Our goal is to boost these rates and give more individuals on the organ waiting list a chance for a life-saving transplantation. Materials and Methods: The study was conducted with the participation of 361 randomly selected renal transplant patients. The study protocol was in accordance with the Declaration of Helsinki and was approved by the Institutional Review Board (approval number: 2022/21). A questionnaire was used to collect data on patients' demographic information, knowledge about organ donation, attitudes toward donation, and reasons for donating or not donating organs. Results: Most patients (%78) indicated that they have knowledge about organ donation. However, only 42% of them have engaged in organ donation. Among the patients who do not donate organs, the most common reasons identified were lack of family approval (45%), personal concerns (32%), and lack of information (23%). Among the patients who donate organs, the most common motivations were helping others (55%), understanding the importance of organ donation (28%), and personal experiences (17%). Conclusion: This study provides important findings on the attitudes of renal transplant patients toward organ donation. Measures such as increasing awareness about organ donation, facilitating the family approval process, and sharing personal experiences should be taken to increase organ donation rates. This can improve the quality of life for patients waiting for organs and save more lives. Conducting more comprehensive and diverse studies in the future can further advance knowledge and awareness about organ donation. [ABSTRACT FROM AUTHOR]

BACKGROUND: As more health care organizations integrate social needs screening and navigation programs into clinical care delivery, the patient perspective is necessary to guide implementation and achieve patient-centered care. OBJECTIVES: To examine patients perceptions of whether social needs affect health and attitudes toward healthcare system efforts to screen for and address social needs. RESEARCH DESIGN: Multi-site, self-administered survey to assess (1) patient perceptions of the health impact of commonly identified social needs; (2) experience of social needs; (3) degree of support for a health system addressing social needs, including which social needs should be screened for and intervened upon; and (4) attitudes toward a health system utilizing resources to address social needs. Analyses were conducted using multivariable logistic regression models with clinic site cluster adjustment. SUBJECTS: Adult patients at seven primary care clinics within a large, integrated health system in Southern California. MAIN MEASURES: Survey measures of experience with, acceptability of, and attitudes toward clinical social determinants of health screening and navigation. KEY RESULTS: A total of 1161 patients participated, representing a 79% response rate. Most respondents (69%) agreed that social needs impact health and agreed their health system should ask about social needs (85%) and help address social needs (88%). Patients with social needs in the last year were more likely to (1) agree social needs impact health (OR 10.2, p

Abstract 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.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Sanjay K Bajpai,1 M Janelle Cambron-Mellott,2 Oliver Will,2 Jiat-Ling Poon,1 Qianqian Wang,1 Beth D Mitchell,1 Eugenia Y Peck,2 Jane Babrowicz,2 Nedina K Raibulet,1 Christopher J Child,1 Kathleen Beusterien2 1Eli Lilly and Company, Indianapolis, IN, USA; 2Cerner Enviza, New York, NY, USACorrespondence: Sanjay K Bajpai, Eli Lilly & Company, 893 S Delaware St, Indianapolis, IN, 46225, USA, Tel +1 317 931 9828, Email sanjay.bajpai@lilly.comBackground: 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.Keywords: diabetes, severe hypoglycemic events, glucagon delivery device, patient attitudes

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. [ABSTRACT FROM AUTHOR]

Abstract 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.

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. [ABSTRACT FROM AUTHOR]

Abstract Background Lysosomal storage diseases (LSDs) are inherited metabolic disorders that may lead to severe multi-organ disease. Current ERTs are limited by anti-drug antibodies, the blood–brain barrier, and early disease onset and progression before ERT is started. We have opened a phase I clinical trial of enzyme replacement therapy (ERT) for fetuses with LSDs (NCT04532047). We evaluated the attitudes of parents and patients with LSDs towards fetal clinical trials and therapies. Methods A multidisciplinary team designed a survey which was distributed by five international patient advocacy groups. We collected patients’ demographic, diagnostic, and treatment information. Associations between respondent characteristics and attitudes towards fetal therapies/trials were analyzed using multivariate ordinal logistic regression. Results The survey was completed by 181 adults from 19 countries. The majority of respondents were mothers from the United States. The most common diseases were MPS1 (26%), MPS3 (19%), and infantile-onset Pompe (14%). Most patients (88%) were diagnosed after birth, at a median of 21 months. Altogether, 65% of participating patients and children of participants had received ERT, 27% a stem cell transplant, and 4% gene therapy. We found that half (49%) of respondents were unlikely to terminate a future affected pregnancy, 55% would enroll in a phase I clinical trial for fetal ERT, and 46% would enroll in a fetal gene therapy trial. Respondents who received postnatal ERT were significantly more likely enroll in a trial for fetal ERT or gene therapy (ERT OR 4.48, 95% CI 2.13–9.44, p

A method commonly used in health care research is the waiting room (WR) survey. While patients are waiting for their appointment, they are asked to complete a questionnaire measuring their attitudes, behaviors and other characteristics. In this paper we synthesize practical guidelines for WR surveys by comparing the method with two similar approaches: public intercept (PI) surveys and drop-off-pick-up (DOPU) surveys. In this comparison we use the Total Survey Error approach Groves (Survey Methodology, Wiley, New York, 2004); (Groves in Public Opinion Quarterly 74(5): 849-879, 2010) and apply it to three case examples in which one of the three surveys is used. We take into account measurement (validity, measurement- and processing error) and representation (coverage-, sampling- and nonresponse error). From our review, we conclude that waiting room surveys, though limited to patients and their caregivers, can provide useful information on patients' perspective on health care. Response rates in waiting rooms are usually high, but often not even reported. We recommend adjustment for sampling bias by taking into account the number of visits to the hospital per respondent and sample times proportionate to the number of sample members expected on a particular time. These surveys also allow for collection of para-data; i.e., relevant information in the circumstances of a request to participate in survey research, and behavior of surveyors can easily be controlled, or investigated in an experimental design. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract Background Since the legalization of medical marijuana (MMJ) in Ohio in 2018, many chronic pain (CP) patients have become interested in it as an alternative or adjunct to prescription opioids. This has not only created a need for pain management specialists to learn about this potential indication for MMJ but also for them to have more detailed knowledge of patient attitudes and willingness to comply with providers’ recommendations regarding its safe use with other pain medications. For this purpose, we surveyed CP patients in a region severely affected by the opioid crisis in order to provide better education, formulate treatment plans, and develop clinical policies. Methods We designed and administered the Medical Marijuana Interest Questionnaire (MMIQ) online to patients of the Western Reserve Hospital Center for Pain Medicine (CPM) with a diagnosis of CP who were not yet using MMJ. Questions addressed demographic and clinical characteristics, willingness to consider MMJ, and compliance with treatment plans and concerns. We then carried out a statistical analysis including Pearson chi-square, Spearman’s rho and Kendall’s tau tests to measure associations between variables to identify factors that may influence willingness to use MMJ. Results After sending 1047 email invitations to complete the MMIQ, 242 (23.1%) completed questionnaires were returned. The average age range of all respondents was 51-60 years, 171 (70.7%) were female and 147 (60.7%) were current opioid users. The 204 (84.3%) respondents who were willing to consider using MMJ were given access to the entire questionnaire. Of these, 138 (67.6%) reported wanting to use less opioids after starting MMJ and 191 (93.6%) were amenable to following their pain specialists’ recommendations about using MMJ concurrently with opioids. Their greatest concern on a 0-5 scale was affordability (2.98) and there was a statistically significant negative correlation between older age and preference for inhaled forms (p = 0.023). Conclusion The MMIQ was successful in eliciting important data regarding patients’ attitudes about MMJ for opioid titration and potential compliance. Our study was limited by being administered online rather than in-person, which skewed the demographic makeup of the sample. The MMIQ can be used to study similar populations or adapted to patients already using MMJ. Similar surveys of MMJ-experienced patients could be combined with chart reviews to study the success of these products for pain control and opioid substitution.

• Community health center patients with epilepsy knew little about SUDEP. • Patients with epilepsy who identify as Hispanic desire to know their risk of SUDEP. • These patients desire to know from their provider, and soon after diagnosis. • Primary care providers often do not disclose risk of SUDEP. 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. 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. 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). 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. [ABSTRACT FROM AUTHOR]

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. Plain Language Summary: 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. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To enhance your knowledge and understanding of intercultural communication principles and challenges • To reflect on intercultural communication in your workplace and on how you may be able to help enhance it • To count towards revalidation as part of your 35 hours of CPD, or you may wish to write a reflective account (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers) 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. [ABSTRACT FROM AUTHOR]

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.

Objectives Unused/expired medicines that are improperly disposed of can enter soil and water supply and have negative implications for public health. This study aimed to assess patients' knowledge and understanding of medication disposal practices and their willingness to participate in a medication takeback programme. Methods A self-administered questionnaire comprising of 26 questions based on demographics, knowledge, beliefs, practices and concerns was utilized in this study. The study was conducted over 12 weeks at outpatient pharmacy sites located in the four Regional Health Authorities in Trinidad. Statistical Package for the Social Sciences (SPSS) version 24 was used for statistical analysis. Key findings A total of 547 persons completed the questionnaire. Knowledge of the dangers of improper medication disposal was highest in those aged 18–25 years (P = 0.007) and having secondary/tertiary level education (P = 0.002). Disposal of unused/expired medication via household thrash (86.1%) was the most commonly encountered practice. Only 14.1% (n = 77) of respondents asked the pharmacist for advice on best disposal practice, although 47.3% (n = 259) thought that the pharmacist should be the main source of advice for information on medication disposal practices. There was a willingness to participate in a medicine takeback programme from 82% (n = 449) of the respondents, and the majority (67.5%) (n = 303) would prefer it if medication takeback programmes were implemented at private community pharmacies. Conclusions Patients in Trinidad utilized household garbage as their main disposal method. There is a need to implement a medication takeback programme and educate the public on proper medication disposal. [ABSTRACT FROM AUTHOR]

Objective: To evaluate patients' attitudes regarding their dizziness, provider capabilities, and receptiveness toward treatment. Study Design: Cross-sectional study. Setting: Tertiary care vestibular clinic. Patients: Ages 18 years or older, fluent in English, and who presented with a chief complaint of dizziness or vertigo. Intervention(s): N/A. Main Outcomes Measure(s): Non-validated questionnaire surveying patients' beliefs regarding the cause of their dizziness, likelihood of successful treatment, and openness to various treatment modalities Results: Patients were asked to complete an online non-validated survey regarding their dizziness prior to being evaluated in neurotology clinic. About 67 surveys were completed between January 2017 and September 2018. A majority of patients attributed their dizziness to their ears (n = 47, 70%), followed by the brain (n = 29, 43%). Most subjects chose "neither agree nor disagree" about whether their provider could identify the cause of their dizziness (27%). Most subjects also chose "neither agree nor disagree" that their dizziness would resolve with treatment (31%). These attitudes were not influenced by demographics, dizziness severity, anxiety, depression, or quality of life on multivariate ordinal regression modeling. Conclusions: Patients who experience dizziness have neutral attitudes with regards to believing that their provider will be able to identify the cause of their dizziness and whether their dizziness will resolve with treatment. These neutral attitudes are experienced by a plurality of patients and do not differ by demographic information, dizziness handicap, quality of life, depression, or anxiety. [ABSTRACT FROM AUTHOR]

Abstract Background Multimorbidity and polypharmacy are very common in older adults in primary care. Ideally, general practitioners (GPs), should regularly review medication lists to identify inappropriate medication(s) and, where appropriate, deprescribe. However, it remains challenging to deprescribe given time constraints and few recommendations from guidelines. Further, patient related barriers and enablers to deprescribing have to be accounted for. The aim of this study was to identify barriers and enablers to deprescribing as reported by older adults with polypharmacy and multimorbidity. Methods We conducted a survey among participants aged ≥70 years, with multimorbidity (≥3 chronic conditions) and polypharmacy (≥5 chronic medications). We invited Swiss GPs, to recruit eligible patients who then completed a paper-based survey on demographics, medications and chronic conditions. We used the revised Patients’ Attitudes Towards Deprescribing (rPATD) questionnaire and added twelve additional Likert scale questions and two open-ended questions to assess barriers and enablers towards deprescribing, which we coded and categorized into meaningful themes. Result Sixty four Swiss GPs consented to recruit 5–6 patients each and returned 300 participant responses. Participants were 79.1 years (SD 5.7), 47% female, 34% lived alone, and 86% managed their medications themselves. Sixty-seven percent of participants took 5–9 regular medicines and 24% took ≥10 medicines. The majority of participants (77%) were willing to deprescribe one or more of their medicines if their doctor said it was possible. There was no association with sex, age or the number of medicines and willingness to deprescribe. After adjustment for baseline characteristics, there was a strong positive association between willingness to deprescribe and saying that because they have a good relationship with their GP, they would feel that deprescribing was safe OR 11.3 (95% CI: 4.64–27.3) and agreeing that they would be willing to deprescribe if new studies showed an avoidable risk OR 8.0 (95% CI 3.79–16.9). From the open questions, the most mentioned barriers towards deprescribing were patients feeling well on their current medicines and being convinced that they need all their medicines. Conclusions Most older adults with polypharmacy are willing to deprescribe. GPs may be able to increase deprescribing by building trust with their patients and communicating evidence about the risks of medication use.

Aim: Patient knowledge and attitudes toward pharmacogenetic (PGx) testing may impact adoption of clinical testing. Methods: Questionnaires regarding knowledge, attitudes and ethics of PGx testing were distributed to 504 patients enrolled in the ADAPT study conducted at two urban hospitals in Philadelphia, Pennsylvania, USA. Responses were assessed using multivariable logistic regression. Results: 311 completed the survey (62% response rate). 74% were unaware of PGx testing, but 79% indicated using PGx results to predict medication efficacy was important. In a multivariable model, higher education level (p = 0.031) and greater genetics knowledge (p < 0.001) were associated with more positive attitudes toward PGx testing. Conclusion: Greater patient knowledge of genetics was associated with a more positive attitude toward PGx testing, indicating that educational strategies aimed at increasing genetics knowledge may enhance adoption of PGx testing in the clinic. Pharmacogenetic (PGx) testing looks for genetic variations that may impact one's ability to respond to certain medications. This has the potential to improve patient care and minimize side effects from medications but is not currently used as standard of care for several reasons including a limited understanding of patient perceptions toward PGx testing. This study aimed to assess patient knowledge, attitudes and ethics of PGx testing. Questionnaires were given to patients enrolled in a clinical trial at two urban hospitals in Philadelphia, Pennsylvania, USA. In the study, patients underwent a nonsurgical procedure to open narrowed blood vessels supplying the heart muscles and were prescribed antiplatelet medications afterward. As part of study participation, some patients had undergone PGx testing to guide antiplatelet therapy following while others received standard of care (no PGx testing). We found that patients were generally not aware of PGx testing but felt it would be important information to have to guide their treatment options. Higher education levels and greater genetics knowledge were factors associated with more positive attitudes toward PGx testing. An understanding of patient perceptions, knowledge and misconceptions of PGx testing can allow healthcare professionals to better address knowledge gaps and increase the use of PGx testing in clinical settings. [ABSTRACT FROM AUTHOR]

Rationale and Objectives: Our purpose is to understand patient preferences towards contrast-enhanced imaging such as CEM or MRI for breast cancer screening.Methods and Materials: An anonymous survey was offered to all patients having screening mammography at a single academic institution from December 27 th 2019 to March 6 th 2020. Survey questions related to: (1) patients' background experiences (2) patients' concern for aspects of MRI and CEM measured using a 5-point Likert scale, and (3) financial considerations.Results: 75% (1011/1349) patients completed the survey. 53.0% reported dense breasts and of those, 47.6% had additional screening. 49.6% had experienced a callback, 29.0% had a benign biopsy, and 13.7% had prior CEM/MRI. 34.7% were satisfied with mammography for screening. A majority were neutral or not concerned with radiation exposure, contrast allergy, IV line placement, claustrophobia, and false positive exams. 54.7% were willing to pay at least $250-500 for screening MRI. Those reporting dense breasts were less satisfied with mammography for screening (p<0.001) and willing to pay more for MRI (p<0.001). If patients had prior CEM/MRI, there was less concern for an allergic reaction (p<0.001), IV placement (p=0.025), and claustrophobia (p=0.006). There was less concern for false positives if they had a prior benign biopsy (p=0.029) or prior CEM/MRI (p=0.005) and less concern for IV placement if they had dense breasts (p=0.007) or a previous callback (p=0.013).Conclusion: The screening population may accept CEM or MRI as a screening exam despite its risks and cost, especially patients with dense breasts and patients who have had prior CEM/MRI. [ABSTRACT FROM AUTHOR]

Background: The use of Hepatitis C (HCV) NAT positive allografts remains unusual and is clustered at few centers. We conducted a contemporary literature review to assess whether patient and clinician attitudes toward viremic organs impact acceptance. Methods: Databases including PubMed, MEDLINE, and SCOPUS databases were reviewed to identify studies focused on evaluating patient and provider perceptions of HCV NAT positive organ use within the DAA era (January 2015–April 2021). Search included MeSH terms related to Hepatitis C, transplantation, and patient and clinician attitudes. Two investigators extracted study characteristics including information on willingness to accept viremic organs, HCV‐specific outcomes knowledge, HCV‐specific concerns, and factors that contributed to acceptance or non‐acceptance. Results: Eight studies met all inclusion criteria. These included three pretransplant patient‐directed studies, two post‐transplant patient‐directed studies, one pre‐ and post‐transplant patient‐directed study, and two clinician‐directed studies. Common themes identified were concerns regarding HCV cure rates, viremic organ quality, DAA cost, stigma, and the possibility of HCV transmission to household members. The perception of decreased waitlist time was associated with viremic organ acceptance. Physician trust played a mixed role in acceptance patterns. Conclusions: Knowledge of high cure rates, shorter waitlist times, and higher organ quality appear to have the highest impact on organ acceptance. [ABSTRACT FROM AUTHOR]

Background: The Western Australian Preterm Birth Prevention Initiative was officially launched in November 2014. It demonstrated an initial decrease in the preterm birth rate in Western Australia. One of the key points of this initiative is the routine ultrasound measurement of the cervical length in mid‐pregnancy. Aim: The aim of this study was to evaluate the perceptions and attitudes of Western Australian women regarding transvaginal cervical length (TVCL) screening for preterm birth prevention. Materials and methods: Self‐administered questionnaires were completed by pregnant women before and after their mid‐trimester obstetric ultrasound. Maternal demographical and medical data were collected in addition to opinions of TVCL screening. Results: A total of 598 women participated with the maternal age range representative of the Western Australian obstetric population. There was a high rate of acceptance of TVCL imaging, with 2% of the 149 women declining a transvaginal ultrasound (TVU) offered in this study, 1.5% refusing a TVU in the past and 5.7% reporting that they would have a concern in having a TVU in the future. Women stated that they either had declined TVCL in the past (11%) or would decline in the future (30.7%) as they wanted to discuss the procedure with their clinician first, had been advised not to have a TVU by their clinician (11% in the past and 47.7% in the future) or felt uncomfortable with the operator (22% at a previous TVU and 34.4% in the future). Conclusion: Pregnant women participating in this study had a high acceptance of TVCL screening for preterm birth prevention. [ABSTRACT FROM AUTHOR]

Background and Objectives: Patient’s behaviours, attitudes and beliefs related to asthma and its treatment were shown to influence the adherence to therapy and the level of asthma control. This survey aimed to assess the level of asthma control and patient-reported behaviours, attitudes and expectations related to their disease in Romanian patients. Materials and Methods: This cross-sectional quantitative survey was performed in February-March 2019 and enrolled 70 specialist physicians experienced in asthma management and 433 asthma patients under their care. Results: Of the 433 patients enrolled, 19.4% had mild asthma, 60.5% moderate asthma and 20.1% severe asthma. For the previous 12 months, asthma symptoms, exacerbations and emergency room visits were common in the sample analysed, with significantly higher figures in severe asthma patients (p < 0.001). The most important treatment goal for asthma patients was participation in all activities of daily living, while for physicians this was preventing asthma exacerbations. The valuation of the treatment goals was different between patients with severe asthma and those with mild and moderate forms. Based on the patients’ responses, 3 attitude clusters were identified: empowered savvy (36.5% of the patients), pessimistic non-compliers (43.2%), and anxious strugglers (20.3%). “Empowered savvy” had the lowest frequency of severe asthma, the highest adherence to maintenance therapy and the highest level of confidence in the effectiveness of asthma medication. The opposite of this attitude cluster is the “anxious strugglers”, containing more patients with severe asthma, a higher score for worries about asthma therapy and better self-reported knowledge of their treatment, contrasting with a proportion of 25% taking maintenance therapy only when having breathing difficulties. Conclusion: Asthma control in Romania remains poor, with frequent exacerbations and hospitalizations. The differences in treatment goals found between patients and physicians and between different asthma severity groups suggest the need for more patient-centred approaches. [ABSTRACT FROM AUTHOR]

The performance of the healthcare system is obtained by evaluating the quality of the healthcare. The image obtained from health services assessments is important because it shows the degree to which they meet or exceed expectations. Attitudes towards health care are measured by the perception of patients through favorable or unfavorable responses to the care provided. The patient's satisfaction is obtained by evaluating his experience in healthcare, being concerned about the quality of the healthcare services. Between the quality of the medical services and the satisfaction of the patients there is a close connection, being a permanent challenge for evaluating the perception of the patients on the health services. Patient satisfaction represents their degree of satisfaction with their perception of a hospital quality management regarding the services provided by it and the results related to the health status, the interaction with the medical staff, having an impact on the evolution of their health status. Patients are increasingly responsible for managing their own health, and consumer information technologies are becoming a critical component of health systems. The methodological approach will be realized through a qualitative analysis through a prospective study, by reviewing the articles in the journals on identifying the particularities of the performance of a healthcare system. The performance of the health system can have a major influence on the national decision-makers to understand the characteristics and processes that contribute to the relative levels of performance.

Abstract Aim This study explored the attitudes of patients with advanced cancer towards MTP and return of results, prior to undergoing genomic testing within a research program. Methods Participants were recruited as part of the longitudinal PiGeOn (Psychosocial Issues in Genomics in Oncology) study involving patients with advanced/metastatic solid cancer who had exhausted therapeutic options and who were offered MTP in order to identify cognate therapies. Twenty patients, selected by purposive sampling, were interviewed around the time they gave consent to MTP. Interviews were audio recorded, transcribed and analysed using thematic analysis. Themes identified in the transcripts were cross-validated via qualitative responses to the PiGeOn study survey (n = 569; 63%). Results All interviewed participants gave consent to MTP without reservation. Three themes were identified and further supported via the survey responses: (1) Obvious agreement to participate, primarily because of desire for new treatments and altruism. (2) The black box – while participant knowledge of genomics was generally poor, faith in their oncologists and the scientific process encouraged them to proceed with testing; and (3) Survival is the priority – receiving treatment to prolong life was the priority for all participants, and other issues such as identification of a germline variant were generally seen as ancillary. Conclusion Having advanced cancer seemed to abrogate any potential concerns about MTP. Participants valued the research for varied reasons, but this was secondary to their priority to survive. While no negative attitudes toward MTP emerged, limitations in understanding of genomics were evident.

Aim: To review and synthesise the literature examining the patients' experience of faecal microbiota transplantation. Background: Faecal microbiota transplantation is a common treatment for many conditions, including Clostridium Difficile infections. Patients' experience of treatments is an important influence on clinical decision‐making and treatment adherence. Design: The PRISMA guidelines guided this systematic review. The review was registered with PROSPERO [CRD42020140446]. Method: A search of Cumulative Index of Nursing and Allied Health Literature, Medline and Embase was conducted for studies published in English and French up to June 2020. Risk of bias was examined using Critical Appraisal Skills Program tools, and quality appraisal was performed independently by three reviewers. Primary outcome of interest was the patient experience of faecal microbiota transplantation. Data were synthesised using a narrative approach. Results: The search identified 3316 citations, and 12 studies were included. Methodological quality of studies was moderate to low quality. Few studies have accurately explored the patients' experience of faecal microbiota transplantation: most focus on clinical outcomes or hypothetical scenarios regarding the patients' perspectives of faecal microbiota transplantation. Only one study was identified where the sole focus was the patients' experience of faecal microbiota transplantation. Patient's experience of faecal microbiota transplantation was diverse and complex with physiological and psychological components dependent on the patient's medical condition, the administration method and the efficacy. Conclusion: Patients did not find faecal microbiota transplantation unappealing; however, patients equally reported the procedural experience was unpleasant. Limited results and low quality evidence suggest that further evaluation of the patient experience of faecal microbiota transplantation would be beneficial. Relevance to clinical practice: Identifying the patients' experience of faecal microbiota transplantation may inform recommendations regarding alternate treatment therapies and enable opportunities to provide quality care for patients that require faecal microbiota transplantation. [ABSTRACT FROM AUTHOR]

Background: Cancer gene panel testing is available in Ireland. The need for a clear strategy to deal with patient information generated from tumour genomic testing is recognised as a challenge in the National Cancer Strategy. However, the public's attitude and opinions regarding these results is not known in Ireland. Aims: This prospective questionnaire study assessed the knowledge and opinions of patients in a national oncology centre, surrounding cancer gene panel testing. Methods: An anonymised modified validated questionnaire was completed by volunteering patients in the medical oncology department. It comprised 14 questions which assessed patient's familiarity, intention, benefits and concerns associated with tumour genetic testing using a four-point Likert scale. Patients recorded their primary cancer diagnosis and family cancer history. Results: Eighty-four patients completed the questionnaire with 77 (92%) patients declaring their primary cancer diagnosis. The median age was 56 (range 26 to 83) years. Overall, 42% (n = 35) of oncology patients were familiar/somewhat familiar with testing and 90% (n = 76) stated they would avail of genetic testing if available. Patients with breast cancer were no more likely to avail of genetic testing when compared with the non-breast cancer cohort (n = 21 vs. 56, p = 0.58) though they identified concerns with potential discrimination. Conclusion: This is the first prospective Irish study to assess opinions surrounding cancer gene results. Addressing patient's lack of information as regards genetic testing is the first step in establishing a national cancer genetics testing programme in Ireland. [ABSTRACT FROM AUTHOR]

Background Osteoarthritis (OA), common in older adults, leads to joint degradation and inflammation, with risk factors including age, obesity, and genetics. OA strongly indicates cardiovascular disease (CVD), with shared risk factors such as lack of exercise and muscle weakness. This study explores the awareness of OA and its relationship to CVD risk factors. Methodology This cross-sectional study in Al Ahsa, Saudi Arabia, involved an online self-administered questionnaire distributed via Google Forms to randomly selected adults, with ages ranging from 18 to 65 years. Informed consent was taken from all participants. Data was cleaned in Excel and analyzed using SPSS version 29 (IBM Corp., Armonk, NY, USA). Results Our study assessed the awareness of 381 participants about the relationship between OA and CVD. Most participants were female 312 (81.9%). Overall, 250 (65.6%) participants were aged 18-27, and 362 (95.0%) were Saudi nationals. Further, 210 (55.1%) participants had a bachelor's degree, and 223 (58.5%) were students. Healthcare exposure varied, with 207 (54.3%) having no background, and 157 (41.2%) being healthcare students. Notably, 152 (39.9%) knew someone diagnosed with OA, of whom 55 (14.4%) also had CVD. Significant predictors of awareness included studying in healthcare (Exp(B) = 3.325, p = 0.001), receiving OA information (Exp(B) = 2.222, p = 0.007), sources such as school/university (Exp(B) = 7.851, p = 0.000), and personal experience (Exp(B) = 4.768, p = 0.034). Conclusions This study showed a notable gap in awareness about the link between OA and CVD in Al Ahsa, Saudi Arabia. While those with healthcare exposure showed good knowledge, many lacked an understanding of their relationship. Targeted education, particularly for younger and non-healthcare-educated groups, is crucial for improving awareness and promoting effective lifestyle modifications to manage both OA and CVD risks., Competing Interests: Human subjects: Consent was obtained or waived by all participants in this study. Research Ethics Committee at King Faisal University issued approval KFU-REC-2024-MAR-ETHICS2103. Animal subjects: All authors have confirmed that this study did not involve animal subjects or tissue. Conflicts of interest: In compliance with the ICMJE uniform disclosure form, all authors declare the following: Payment/services info: All authors have declared that no financial support was received from any organization for the submitted work. Financial relationships: All authors have declared that they have no financial relationships at present or within the previous three years with any organizations that might have an interest in the submitted work. Other relationships: All authors have declared that there are no other relationships or activities that could appear to have influenced the submitted work., (Copyright © 2024, AlQarni et al.)

Patient access to electronic health records gives rise to ethical questions related to the patient-doctorcomputer relationship. Our study aims to examine patients’ moral attitudes toward a shared EHR, with a focus on autonomy, information access, and responsibility. A de novo self-administered questionnaire containing three vignettes and 15 statements was distributed among patients in four different settings. A total of 1688 valid questionnaires were collected. Patients’ mean age was 51 years, 61% was female, 50% had a higher degree (college or university), and almost 50% suffered from a chronic illness. Respondents were hesitant to hide sensitive information electronically from their care providers. They also strongly believed hiding information could negatively affect the quality of care provided. Participants preferred to be informed about negative test results in a face-to-face conversation, or would have every patient decide individually how they want to receive results. Patients generally had little experience using patient portal systems and expressed a need for more information on EHRs in this survey. They tended to be hesitant to take up control over their medical data in the EHR and deemed patients share a responsibility for the accuracy of information in their record. [ABSTRACT FROM AUTHOR]

Background: To improve harm prevention, patient engagement in safety at the direct care level is advocated. For patient safety to most effectively include patients, it is critical to reflect on existing evidence, to better position future research with implications for education and practice. Methods: As part of a multi‐phase study, which included a qualitative descriptive study (Duhn & Medves, 2018), a scoping review about patient engagement in safety was conducted. The objective was to review papers about patients' attitudes and behaviours concerning their involvement in ensuring their safe care. The databases searched included MEDLINE, CINAHL and EMBASE (year ending 2019). Results: This review included 35 papers about "Patient Attitudes" and 125 papers about "Patient Behaviours"—indicative of growing global interest in this field. Several patterns emerged from the review, including that most investigators have focused on a particular dimension of harm prevention, such as asking about provider handwashing, and there is less known about patients' opinions about their role in safety generally and how to actualize it in a way that is right for them. While patients may indicate favourable attitudes toward safety involvement generally, intention to act or actual behaviours may be quite different. Conclusion: This review, given its multi‐focus across the continuum of care, is the first of its kind based on existing literature. It provides an important international "mapping" of the initiatives that are underway to engage patients in different elements of safety and their viewpoints, and identifies the gaps that remain. [ABSTRACT FROM AUTHOR]

Objectives: This study aims to validate an Arabic version of the revised Patients' Attitudes Toward Deprescribing (rPATD) translated tool and to describe polypharmacy patients' attitudes toward deprescribing in Jordan. Methods: rPATD translation was guided by ISPOR's Principles of Good Practice. A convenient sample of adult outpatients with polypharmacy was recruited from a major teaching hospital in Jordan. Reliability was assessed using Cronbach's alpha and the intraclass correlation coefficient (ICC). Validity was assessed using face and construct validity using confirmatory factor analysis. Key findings: A total of 358 questionnaires were collected from patients (mean age: 60.4 ± 12.03). Overall, polypharmacy patients were willing to stop one or more of their medications upon a physician's recommendations and were not concerned about deprescribing. Similar to the original rPATD tool, factor analysis resulted in four factors (burden, appropriateness, concern about stopping, and involvement). Internal consistencies for constructs ranged from 0.718 (appropriateness) to 0.85 (concerns about stopping). ICC ranged from 0.718–0.972, indicating good to excellent reliability. Conclusions: This study provided an Arabic translation of the rPATD with evidence of validity and reliability comparable to the original tool. The Arabic rPATD could be used for adult patients in Arabic‐speaking countries to ultimately contribute to the global literature of deprescribing. Overall, the patients in this study showed a favourable attitude towards deprescribing through a shared decision‐making process with their physicians. This can be seen as an opportunity to reduce the burden of polypharmacy and unnecessary medications. [ABSTRACT FROM AUTHOR]

Background: As more health care organizations integrate social needs screening and navigation programs into clinical care delivery, the patient perspective is necessary to guide implementation and achieve patient-centered care.Objectives: To examine patients' perceptions of whether social needs affect health and attitudes toward healthcare system efforts to screen for and address social needs.Research Design: Multi-site, self-administered survey to assess (1) patient perceptions of the health impact of commonly identified social needs; (2) experience of social needs; (3) degree of support for a health system addressing social needs, including which social needs should be screened for and intervened upon; and (4) attitudes toward a health system utilizing resources to address social needs. Analyses were conducted using multivariable logistic regression models with clinic site cluster adjustment.Subjects: Adult patients at seven primary care clinics within a large, integrated health system in Southern California.Main Measures: Survey measures of experience with, acceptability of, and attitudes toward clinical social determinants of health screening and navigation.Key Results: A total of 1161 patients participated, representing a 79% response rate. Most respondents (69%) agreed that social needs impact health and agreed their health system should ask about social needs (85%) and help address social needs (88%). Patients with social needs in the last year were more likely to (1) agree social needs impact health (OR 10.2, p < 0.001), (2) support their health system asking patients about social needs (OR 3.7, p < 0.001), and (3) support addressing patient social needs (OR 3.5, p < 0.001). Differences by social need history, gender, age, race, ethnicity, and education were found.Conclusions: Most patients at a large integrated health system supported clinical social needs screening and intervention. Differences in attitudes by social need history, gender, age, race, ethnicity, and education may indicate opportunities to develop more equitable, patient-centered approaches to addressing social needs. [ABSTRACT FROM AUTHOR]

Background: Public domain physician review websites (PRWs) and personal websites are extremely popular measures that patients use to evaluate physicians before receiving care. Few studies have examined how orthopedic surgeons are rated on PRWs and personal websites. This study examines the online ratings of hip and knee replacement subspecialists.Methods: The American Association of Hip and Knee Surgeons (AAHKS) fellow's ratings were examined from October 1st, 2018 to December 31st, 2018, on Healthgrades.com, Vitals.com, RateMDs.com, Google.com, and personal websites. Number of responses and average ratings (0.0-5.0) were recorded, along with provider gender, years in practice (0-10, 11-20, and 21+), practice type (academic, private), geographic region (NE, SE, MW, SW, W), degree (MD, DO), and fellowship training (yes, no). The Kruskal-Wallis testing was performed to determine factors affecting positive surgeon ratings.Results: 98.3% (483) of 490 AAHKS surgeons were rated at least once. No significant differences in average ratings were identified between websites. Surgeons in practice 1-10 years had significantly higher ratings than those in practice 11-20 and 21+ years (P < .01). Fellowship-trained surgeons in practice 1-10 years also showed significantly higher ratings. No differences in average ratings were found between gender, practice type, and geographic region.Conclusions: AAHKS surgeons have high average ratings and are rated online frequently. Surgeons in practice 1-10 years had statistically higher overall average ratings. Adult reconstruction fellowship training was also associated with higher average ratings for surgeons in practice 1-10 years. Public domain PRWs and personal websites showed no difference in average ratings. [ABSTRACT FROM AUTHOR]

Objective: Treatment utilization for psychiatric illness is low, perhaps influenced by limited consumer knowledge of evidence‐based psychological treatments (EBPTs). To inform consumer‐directed dissemination efforts, we characterized preferences, beliefs, and knowledge about specific EBPTs (cognitive behavioral therapy [CBT], dialectical behavior therapy [DBT], and acceptance and commitment therapy [ACT]); and examined potential sociodemographic and treatment history correlates. Method: Before receiving treatment at a psychiatric partial hospital, patients (n = 249) completed the Psychological Treatment Consumer Questionnaire. Results: Most (75%) patients felt responsible for being aware of psychotherapy options and that it was important to receive research‐supported psychotherapy (80%), but were split on whether research (42%) or their provider's recommendation (58%) carried greater decisional weight. Most (93%) patients had heard of CBT (93%) and DBT (71%), but not ACT (35%). Prior exposure to these EBPTs increased the likelihood of recommending them to others. Conclusions: Findings support initiatives to enhance consumer familiarity with these EBPTs and inform dissemination efforts. [ABSTRACT FROM AUTHOR]

The health sector faces a series of problems generated by patients who miss their scheduled appointments. The main challenge to this problem is to understand the patient’s profile and predict potential absences. The goal of this work is to explore the main causes that contribute to a patient’s no-show and develop a prediction model able to identify whether the patient will attend their scheduled appointment or not. The study was based on data from clinics that serve the Unified Health System (SUS) at the University of Vale do Itajaí in southern Brazil. The model obtained was tested on a real collected dataset with about 5000 samples. The best model result was performed by the Random Forest classifier. It had the best Recall Rate (0.91) and achieved an ROC curve rate of 0.969. This research was approved and authorized by the Ethics Committee of the University of Vale do Itajaí, under opinion 4270,234, contemplating the General Data Protection Law.

Background and Objectives: Patient’s behaviours, attitudes and beliefs related to asthma and its treatment were shown to influence the adherence to therapy and the level of asthma control. This survey aimed to assess the level of asthma control and patient-reported behaviours, attitudes and expectations related to their disease in Romanian patients. Materials and Methods: This cross-sectional quantitative survey was performed in February-March 2019 and enrolled 70 specialist physicians experienced in asthma management and 433 asthma patients under their care. Results: Of the 433 patients enrolled, 19.4% had mild asthma, 60.5% moderate asthma and 20.1% severe asthma. For the previous 12 months, asthma symptoms, exacerbations and emergency room visits were common in the sample analysed, with significantly higher figures in severe asthma patients (p < 0.001). The most important treatment goal for asthma patients was participation in all activities of daily living, while for physicians this was preventing asthma exacerbations. The valuation of the treatment goals was different between patients with severe asthma and those with mild and moderate forms. Based on the patients’ responses, 3 attitude clusters were identified: empowered savvy (36.5% of the patients), pessimistic non-compliers (43.2%), and anxious strugglers (20.3%). “Empowered savvy” had the lowest frequency of severe asthma, the highest adherence to maintenance therapy and the highest level of confidence in the effectiveness of asthma medication. The opposite of this attitude cluster is the “anxious strugglers”, containing more patients with severe asthma, a higher score for worries about asthma therapy and better self-reported knowledge of their treatment, contrasting with a proportion of 25% taking maintenance therapy only when having breathing difficulties. Conclusion: Asthma control in Romania remains poor, with frequent exacerbations and hospitalizations. The differences in treatment goals found between patients and physicians and between different asthma severity groups suggest the need for more patient-centred approaches.

Introduction: Mental health issues represent a significant proportion visits to GPs and the Health Research Board found in its survey in 2007 that people are more willing to contact a GP rather than a psychiatrist with mental health issues (Doherty et al, 2007). It is estimated that 90% of mental health issues in Ireland are addressed in general practice, with an international trend towards making mental health services available in primary care (Mental Health Reform, 2013). However, at present the mental health services, both locally in Ireland and internationally, are unable to meet the growing needs of those suffering mental ill health. Healthcare services internationally have started looking at novel and innovative ways of bridging with widening gap between patient needs and the available mental health services. One possible option that has emerged as promising in the last 15 years is the field of e-mental health - “the use of information and communication technology (ICT) to support and improve mental health, including the use of online resources, social media and smartphone applications” (Holles et al, 2015). Although public health bodies in countries such as the United Kingdom and Australia have started recommending the use of e-mental health and digital resources at present there is no government policy on the matter in Ireland. There is a growing body of evidence on this subject internationally but no published research from Ireland. Research aims and method: The aim of this research was to explore patients’ attitudes towards and experience of the use of technology and online resources with regard to mental health. Data was gathered by means of a patient survey. Eight-point questionnaires were distributed at random and completed anonymously by 61 patients at the Carlton Clinic in Bray, Co. Wicklow, Ireland in 2017. The objectives of the questionnaire were to ascertain patients’ levels of awareness of the technology based resources available; whether they were using them; what patients’ experience of using this technology was; whether a GP had ever recommended using digital resources; and, whether patients felt it would be beneficial for GPs to recommend the use of digital resources in relation to mental health. Results: The research showed low levels of awareness and usage with 39% of respondents aware of technology based resources and only 11% having ever used them. However, of those using these resources there was a positive response in terms of their experience using it with all finding it useful. 15% of respondents reported that a GP had recommended digital resources to them. Perhaps the most promising finding was that 72% of those surveyed reported they would find it useful if a GP recommended digital resources to them with regard to mental health issues. Conclusion: In conclusion this research shows that at present awareness and usage of digital resources amongst this primary care population is low. However, the majority of these patients appear to be positive towards and open to option of digital resources and are willing to discuss them in mental health consultations.