Search

BackgroundOver the past decade, there has been an increase in the use of information technologies to educate and support people with dementia and their family caregivers. At the same time, chatbot technologies have become increasingly popular for use by the public and have been identified as having benefits for health care delivery. However, little is known about how chatbot technologies may benefit people with dementia and their caregivers. ObjectiveThis study aims to identify the types of current commercially available chatbots that are designed for use by people with dementia and their caregivers and to assess their quality in terms of features and content. MethodsChatbots were identified through a systematic search on Google Play Store, Apple App Store, Alexa Skills, and the internet. An evidence-based assessment tool was used to evaluate the features and content of the identified apps. The assessment was conducted through interrater agreement among 4 separate reviewers. ResultsOf the 505 initial chatbots identified, 6 were included in the review. The chatbots assessed varied significantly in terms of content and scope. Although the chatbots were generally found to be easy to use, some limitations were noted regarding their performance and programmed content for dialog. ConclusionsAlthough chatbot technologies are well established and commonly used by the public, their development for people with dementia and their caregivers is in its infancy. Given the successful use of chatbots in other health care settings and for other applications, there are opportunities to integrate this technology into dementia care. However, more evidence-based chatbots that have undergone end user evaluation are needed to evaluate their potential to adequately educate and support these populations.

Inherited macular dystrophies (iMDs) are a group of genetic disorders, which affect the central region of the retina. To investigate the genetic basis of iMDs, we used single-molecule Molecular Inversion Probes to sequence 105 maculopathy-associated genes in 1352 patients diagnosed with iMDs. Within this cohort, 39.8% of patients were considered genetically explained by 460 different variants in 49 distinct genes of which 73 were novel variants, with some affecting splicing. The top five most frequent causative genes were ABCA4 (37.2%), PRPH2 (6.7%), CDHR1 (6.1%), PROM1 (4.3%) and RP1L1 (3.1%). Interestingly, variants with incomplete penetrance were revealed in almost one-third of patients considered solved (28.1%), and therefore, a proportion of patients may not be explained solely by the variants reported. This includes eight previously reported variants with incomplete penetrance in addition to CDHR1:c.783G>A and CNGB3:c.1208G>A. Notably, segregation analysis was not routinely performed for variant phasing-a limitation, which may also impact the overall diagnostic yield. The relatively high proportion of probands without any putative causal variant (60.2%) highlights the need to explore variants with incomplete penetrance, the potential modifiers of disease and the genetic overlap between iMDs and age-related macular degeneration. Our results provide valuable insights into the genetic landscape of iMDs and warrant future exploration to determine the involvement of other maculopathy genes.

ABSTRACT Background Inherited retinal diseases (IRDs) are a clinically and genetically heterogeneous group of disorders affecting millions worldwide. Despite the widespread adoption of next‐generation sequencing (NGS) panels, there remains a critical gap in the genetically diverse and understudied African populations. Methods One hundred and thirty‐five South African patients affected by various IRDs underwent NGS using a custom‐targeted panel sequencing over 100 known genes. The panel was supplemented by in silico screening for a MAK‐Alu insertion and screening of seven functionally established deep intronic variants. Results Through our combined screening strategy, we obtained a probable genetic diagnosis for 56% of the cohort. We identified 83 unique variants in 29 IRD genes underlying the disease, including 16 putative novel variants. Molecular findings prompted recommendations for clinical re‐examination in ten patients. Resolution rates varied across clinical classifications and population groups. Conclusions This study reports the first use of a targeted NGS panel for IRDs in southern Africa, demonstrating a cost‐effective, customisable approach that optimises both diagnostic yield and resource efficiency, making it a valuable tool for IRD molecular characterisation in resource‐limited settings. Augmenting the panel by screening for variants relevant to South African patients allowed us to achieve a resolution rate in line with international studies. Our study underscores the importance of investigating diverse populations to bridge disparities in genomic research and improve diagnostic outcomes for underrepresented population groups.

Abstract BackgroundThere are numerous communication barriers between family caregivers and providers of people living with dementia, which can pose challenges to caregiving and clinical decision-making. To address these barriers, a new web and mobile-enabled app, called CareHeroes, was developed, which promotes the collection and secured sharing of clinical information between caregivers and providers. It also provides caregiver support and education. ObjectiveThe primary study objective was to examine whether dementia caregivers would use CareHeroes as an adjunct to care and gather psychosocial data from those who used the app. MethodsThis paper presents the implementation process used to integrate CareHeroes into clinical care at 2 memory clinics and preliminary outcome evaluation. Family caregivers receiving services at clinics were asked to use the app for a 12-month period to collect, track, and share clinical information with the care recipient’s provider. They also used it to assess their own mental health symptoms. Psychosocial outcomes were assessed through telephone interviews and user data were collected by the app. ResultsA total of 21 caregivers enrolled in the pilot study across the 2 memory clinics. Usage data indicated that caregivers used many of the features in the CareHeroes app, though the chatbot was the most frequently used feature. Outcome data indicated that caregivers’ depression was lower at 3-month follow-up (t11P ConclusionsRecruitment and retention of the pilot study were impacted by COVID-19 restrictions, and therefore more testing is needed with a larger sample to determine the potential impact of CareHeroes on caregivers’ mental health. Despite this limitation, the pilot study demonstrated that integrating a new supportive app for caregivers as an adjunct to clinical dementia care is feasible. Implications for future technology intervention development, implementation planning, and testing for caregivers of people living with dementia are discussed.

BackgroundSelf-help and physical leisure activities has become increasingly important in the maintenance of safe and functional mobility among an increasingly elderly population. Preventing the cycle of deterioration, falling, inactivity, dependency, and secondary complications in people with Parkinson disease (PD) is a priority. Research has shown that people with PD are interested in dance and although the few existing trials are small, initial proof of principle trials from the United States have demonstrated beneficial effects on balance control, gait, and activity levels. To our knowledge, there has been no research into long-term effects, cost effectiveness, the influence on spinal posture and turning, or the personal insights of dance participants. ObjectiveThe purpose of this study was to determine the methodological feasibility of conducting a definitive phase III trial to evaluate the benefits of dance in people with PD. We will build on the proof of principle trials by addressing gaps in knowledge, focusing on areas of greatest methodological uncertainty; the choice of dances and intensity of the program; for the main trial, the availability of partners, the suitability of the currently envisaged primary outcomes, balance and spinal posture; and the key costs of delivering and participating in a dance program to inform economic evaluation. MethodsFifty participants (mild-to-moderate condition) will be randomized to the control (usual care) or experimental (dance plus usual care) groups at a ratio of 15:35. Dance will be taught by professional teachers in a dance center in the South of England. Each participant in the experimental group will dance with his or her spouse, a friend, or a partner from a bank of volunteers. A blinded assessor will complete clinical measures and self-reported ability at baseline, and at 3 and 6 months after randomization. A qualitative study of a subgroup of participants and partners will examine user’s views about the appropriateness and acceptability of the intervention, assessment protocol, and general trial procedures. Procedures for an economic evaluation of dance for health care will be developed for the main trial. ResultsRecruitment began in January 2013 and the last participant is expected to complete the trial follow-up in June 2014. ConclusionsFindings from our study may provide novel insights into the way people with PD become involved in dance, their views and opinions, and the suitability of our primary and secondary outcomes. Trial RegistrationInternational Standard Randomized Controlled Trial Number (ISRCTN): 63088686; http://www.controlled-trials.com/ISRCTN63088686/63088686 (Archived by WebCite at http://www.webcitation.org/6QYyjehP7).

Healthcare workers (HCWs) from minoritized communities are a critical partner in moving vaccine-hesitant populations toward vaccination, yet a significant number of these HCWs are delaying or deciding against their own COVID-19 vaccinations. Our study aims to provide a more nuanced understanding of vaccine hesitancy among racially and ethnically minoritized HCWs and to describe factors associated with vaccine non-acceptance. Analysis of a sub-sample of racially and ethnically minoritized HCWs (N = 1131), who participated in a cross-sectional study at two large Southern California medical centers, was conducted. Participants completed an online survey consisting of demographics, work setting and clinical role, influenza vaccination history, COVID-19 knowledge, beliefs, personal COVID-19 exposure, diagnosis, and impact on those closest to them. While overall most HCWs were vaccinated (84%), 28% of Black, 19% of Hispanic, and 8% of Asian American HCWs were vaccine-hesitant. Age, education level, occupation, history of COVID-19, and COVID-19 related knowledge were predictive of vaccine hesitancy. We found significant variations in COVID-19 related knowledge and reasons for vaccine hesitancy among Black (governmental mistrust), Hispanic (preference for physiological immunity), and Asian-American HCWs (concern about side effects) who were vaccine-hesitant or not. Our findings highlight racial and ethnic differences in vaccine-hesitancy and barriers to vaccination among HCWs of color. This study indicates the necessity of targeted interventions to reduce vaccine hesitancy that are mindful of the disparities in knowledge and access and differences between and among racial and ethnic groups.

Inherited macular dystrophies (iMDs) are a group of genetic disorders, which affect the central region of the retina. To investigate the genetic basis of iMDs, we used single-molecule Molecular Inversion Probes to sequence 105 maculopathy-associated genes in 1352 patients diagnosed with iMDs. Within this cohort, 39.8% of patients were considered genetically explained by 460 different variants in 49 distinct genes of which 73 were novel variants, with some affecting splicing. The top five most frequent causative genes were ABCA4 (37.2%), PRPH2 (6.7%), CDHR1 (6.1%), PROM1 (4.3%) and RP1L1 (3.1%). Interestingly, variants with incomplete penetrance were revealed in almost one-third of patients considered solved (28.1%), and therefore, a proportion of patients may not be explained solely by the variants reported. This includes eight previously reported variants with incomplete penetrance in addition to CDHR1:c.783G>A and CNGB3:c.1208G>A. Notably, segregation analysis was not routinely performed for variant phasing—a limitation, which may also impact the overall diagnostic yield. The relatively high proportion of probands without any putative causal variant (60.2%) highlights the need to explore variants with incomplete penetrance, the potential modifiers of disease and the genetic overlap between iMDs and age-related macular degeneration. Our results provide valuable insights into the genetic landscape of iMDs and warrant future exploration to determine the involvement of other maculopathy genes.

Spine disorders are the leading cause of disability worldwide. To promote social inclusion, it is essential to ensure that people can participate in their societies by improving their ability, opportunities, and dignity, through access to high-quality, evidence-based, and affordable spine services for all. To achieve this goal, SPINE20 recommends six actions. - SPINE20 recommends that G20 countries deliver evidence-based education to the community health workers and primary care clinicians to promote best practice for spine health, especially in underserved communities. - SPINE20 recommends that G20 countries deliver evidence-based, high-quality, cost-effective spine care interventions that are accessible, affordable and beneficial to patients. - SPINE20 recommends that G20 countries invest in Health Policy and System Research (HPSR) to generate evidence to develop and implement policies aimed at integrating rehabilitation in primary care to improve spine health. - SPINE20 recommends that G20 countries support ongoing research initiatives on digital technologies including artificial intelligence, regulate digital technologies, and promote evidence-based, ethical digital solutions in all aspects of spine care, to enrich patient care with high value and quality. - SPINE20 recommends that G20 countries prioritize social inclusion by promoting equitable access to comprehensive spine care through collaborations with healthcare providers, policymakers, and community organizations. - SPINE20 recommends that G20 countries prioritize spine health to improve the well-being and productivity of their populations. Government health systems are expected to create a healthier, more productive, and equitable society for all through collaborative efforts and sustained investment in evidence-based care and promotion of spine health. [ABSTRACT FROM AUTHOR]

Introduction: There is a paucity of evidence on the effectiveness of physical interventions for chronic musculoskeletal pain affecting adolescents. This study explored adolescent and parent experiences and perceived effectiveness of physical intervention for chronic musculoskeletal pain in the UK. Methods: Using semi‐structured interviews, 21 young people receiving treatment for chronic musculoskeletal pain and 21 parents were interviewed regarding their healthcare experiences. Data regarding experiences of physical interventions were analysed in this secondary qualitative analysis using inductive reflexive thematic analysis. Results: Three themes that captured why adolescents and parents perceived physical interventions to be effective or not were (1) feeling in control, (2) the right person and an explanation that makes sense and (3) make a difference to me not my foot. Discussion: Core concepts that appeared to influence the perceived effectiveness of physical interventions from the perspectives of adolescents and parents included facilitating adolescent autonomy, establishing a therapeutic alliance on the basis of trust and focusing physiotherapy treatment on meaningful participation in life. Conclusion: There were no ideal physical interventions. The themes convey the importance of therapeutic alliance, intervention context and the need for personalised care. [ABSTRACT FROM AUTHOR]

Diversity in academic medicine and research enhances the quality of the science produced and the efficacy of patient care. Diversity, equity, inclusion, and accessibility (DEIA) statements have recently been suggested or required by academic job postings as a way to measure candidate's commitments to fostering DEIA in their role. In this perspective, we discuss steps to craft effective DEIA statements that convey your actions in, and commitment to, DEIA. We recognize that mandating DEIA statements may actually result in inauthentic or disingenuous statements and offer solutions to encouraging academics to arrive at a meaningful statement that represents their own perspectives on diversity. Last, we provide examples of DEIA statements from three academics at different career points. [ABSTRACT FROM AUTHOR]

Background: Inherited retinal diseases (IRDs) are a clinically and genetically heterogeneous group of disorders affecting millions worldwide. Despite the widespread adoption of next‐generation sequencing (NGS) panels, there remains a critical gap in the genetically diverse and understudied African populations. Methods: One hundred and thirty‐five South African patients affected by various IRDs underwent NGS using a custom‐targeted panel sequencing over 100 known genes. The panel was supplemented by in silico screening for a MAK‐Alu insertion and screening of seven functionally established deep intronic variants. Results: Through our combined screening strategy, we obtained a probable genetic diagnosis for 56% of the cohort. We identified 83 unique variants in 29 IRD genes underlying the disease, including 16 putative novel variants. Molecular findings prompted recommendations for clinical re‐examination in ten patients. Resolution rates varied across clinical classifications and population groups. Conclusions: This study reports the first use of a targeted NGS panel for IRDs in southern Africa, demonstrating a cost‐effective, customisable approach that optimises both diagnostic yield and resource efficiency, making it a valuable tool for IRD molecular characterisation in resource‐limited settings. Augmenting the panel by screening for variants relevant to South African patients allowed us to achieve a resolution rate in line with international studies. Our study underscores the importance of investigating diverse populations to bridge disparities in genomic research and improve diagnostic outcomes for underrepresented population groups. [ABSTRACT FROM AUTHOR]

Abstract Background There is a need to improve consultations between patients with persistent musculoskeletal low back pain and orthopaedic spine clinicians when surgery is not indicated. Poor communication and lack of education about self- management in these consultations have been shown to be associated with increased distress and higher subsequent health care seeking. Aim To develop a standardised intervention to improve spine care consultations for patients for whom surgery is not beneficial. Method The intervention was developed in six stages. The first three stages included: interviews with patients, an interactive workshop with clinicians from a mix of disciplines, and interviews with spine clinicians about their perspective of the recommendations, their perceived difficulties and potential improvements. Information from these stages was synthesised by an expert panel, creating a draft intervention structure and content. The main features of the intervention and the materials developed were then reviewed by patients and spine clinicians. Finally, the research team incorporated the recommended amendments to produce the intervention. Results In total, 36 patients and 79 clinicians contributed to the development of the intervention. The final intervention includes three components: a pre-consultation letter with information suggesting that surgery is one possible intervention amongst many, introducing the staff, and alerting patients to bring with them a potted history of interventions tried previously. The intervention includes short online training sessions to improve clinicians’ communication skills, during the consultation, in reference to listening skills, validation of patients’ pain, and use of appropriate language. Clinicians are also supplied with a list of evidence-based sources for advice and further information to share with patients. Finally, post consultation, a follow up letter includes a short summary of the patients’ clinical journey, the results of their examination and tests, and a reminder of recommendations for self-management. Conclusion The intervention includes aspects around patient education and enhanced clinician skills. It was developed with input from a multitude of stakeholders and is based on patients’ perceptions of what they would find reassuring and empowering when surgery is excluded. The intervention has the potential to improve the patients care journey and might lead to changes in practice in spine clinicians.

Context: The results of this study will provide direction for integrating simulation into continuing professional education (CPE) for athletic trainers (ATs). Objective: Compare the effects of 2 simulation techniques on knowledge and skill acquisition of a cardiovascular assessment. Design: Randomized pretest-posttest design. Setting: Continuing professional education course hosted at a simulation center. Patients or Other Participants: Athletic trainers recruited to a CPE course. Twenty-two (age 22-49) of 30 ATs attended, consented, and completed the course. Participants were randomly assigned to a high-fidelity (12 participants) or low-fidelity (10 participants) group. Intervention(s): High-fidelity and low-fidelity simulation. Main Outcome Measures(s): A 31-question knowledge examination and a 4-station objective structured clinical examination (OSCE) measured knowledge and clinical skills, and specifically the ability to identify heart sounds as part of a comprehensive cardiovascular assessment. Results: From pretest to posttest, all participants significantly improved knowledge (P < 0.001), clinical skills (P < 0.001), and heart-sound identification skill (P = 0.010). The high-fidelity group scored significantly higher (P = 0.48) than the low-fidelity group on the clinical skills portion of the OSCE. Conclusions: Both simulation types can be used in CPE courses for ATs to reinforce the knowledge and skills that are a part of a cardiovascular assessment. High-fidelity simulation improved skill more than low-fidelity simulation because of the active nature of the intervention. Baseline scores were low, thereby strengthening the value to offer CPE to ATs specifically on the elements of conducting a comprehensive cardiovascular assessment. Adding a pretest can help identify knowledge and skill deficits before CPE participation.

Background: With increased emphasis on self-management in healthcare, clinicians need outstanding skills in offering advice and empowering patients to attain an optimal outcome. Objectives: This study explores how undergraduate physiotherapists acquire knowledge, skills, and confidence to offer advice to patients in clinical practice. Methods: Convenience sampling was used to recruit 50 BSc and MSc pre-registration physiotherapy students across all years of study in one university in southern England, UK. Semi-structured interviews were conducted for first year BSc students (n = 13). Six focus groups of mixed BSc and MSc students were conducted, three groups (n = 15 students) were mid-training, and three groups (n = 22 students) were in their final year. Results: Thematic analysis identified 6 themes: advice content; a patient-centered approach; delivery; acquisitions; perceptions; and uptake of advice. Students placed high value on advice-giving, drawing upon multiple learning opportunities, however they felt under-prepared to deliver this skill in practice. Furthermore, perceptions of their student status, and pressures to perform on graded placements were reported to influence the advice they offered to patients. Conclusions: Developing high-level skills in promoting self-management is essential in physiotherapy, this study highlights the challenges for students to develop these skills. Academic and practice educators must explicitly enable and support students to develop the knowledge and skills to confidently offer high-quality advice to patients. [ABSTRACT FROM AUTHOR]