Integrated Approaches and Practical Recommendations in Patient Care Identified with 5q Spinal Muscular Atrophy through Newborn Screening.

In recent years, significant progress has been made in 5q Spinal Muscular Atrophy therapeutics, emphasizing the importance of early diagnosis and intervention for better clinical outcomes. Characterized by spinal cord motor neuron degeneration, 5q-SMA leads to muscle weakness, swallowing difficulties, respiratory insufficiency, and skeletal deformities. Recognizing the pre-symptomatic phases supported by screening and confirmatory genetic tests is crucial for early diagnosis. This work addresses key considerations in implementing 5q-SMA screening within the Brazilian National Newborn Screening Program and explores Brazil's unique challenges and opportunities, including genetic tests, time-to-patient referral to specialized centers, program follow-up, and treatment algorithms. We aim to guide healthcare professionals and policymakers, facilitating global discussions, including Latin American countries, and knowledge-sharing on this critical subject to improve the care for newborns identified with 5q SMA.

Requirements for a dashboard optimized for melanoma patient care through user-centered context exploration.

For time-sensitive treatment of a patient with malignant melanoma, physicians must obtain a rapid overview of the patient's status. This study aimed to analyze context-specific features and processes at the point of care to derive requirements for a dashboard granting more straightforward access to information. The Think-Aloud method, contextual inquiries, and interviews were performed with physicians from the Department of Dermatology at the University Hospital Essen in Germany. The user statements and observations that were obtained were grouped and categorized using an affinity diagram. Based on the derived subjects, requirements were defined, confirmed, and prioritized. The resulting affinity diagram revealed four topics of importance at the point of care. These topics are "Identifying and Processing the Important", a comprehensive "Patient Record", tasks and challenges in the "Clinical Routine", and interactions and experiences with the available "Systems". All aspects have been reflected in 135 requirements for developing context- and indication-specific patient dashboards. Our work has elucidated the most important aspects to consider when designing a dashboard that improves patient care by enabling physicians to focus on the relevant information. Furthermore, it has been demonstrated that the aspects most often mentioned are not context-specific and can be generalized to other medical contexts.

Multimorbidity and associated informal care receiving characteristics for US older adults: a latent class analysis.

BACKGROUND: Older adults with varying patterns of multimorbidity may require distinct types of care and rely on informal caregiving to meet their care needs. This study aims to identify groups of older adults with distinct, empirically-determined multimorbidity patterns and compare characteristics of informal care received among estimated classes. METHODS: Data are from the 2011 National Health and Aging Trends Study (NHATS). Ten chronic conditions were included to estimate multimorbidity patterns among 7532 individuals using latent class analysis. Multinomial logistic regression model was estimated to examine the association between sociodemographic characteristics, health status and lifestyle variables, care-receiving characteristics and latent class membership. RESULTS: A four-class solution identified the following multimorbidity groups: some somatic conditions with moderate cognitive impairment (30%), cardiometabolic (25%), musculoskeletal (24%), and multisystem (21%). Compared with those who reported receiving no help, care recipients who received help with household activities only (OR = 1.44, 95% CI 1.05-1.98), mobility but not self-care (OR = 1.63, 95% CI 1.05-2.53), or self-care but not mobility (OR = 2.07, 95% CI 1.29-3.31) had greater likelihood of being in the multisystem group versus the some-somatic group. Having more caregivers was associated with higher odds of being in the multisystem group compared with the some-somatic group (OR = 1.09, 95% CI 1.00-1.18), whereas receiving help from paid helpers was associated with lower odds of being in the multisystem group (OR = 0.36, 95% CI 0.19-0.77). CONCLUSIONS: Results highlighted different care needs among persons with distinct combinations of multimorbidity, in particular the wide range of informal needs among older adults with multisystem multimorbidity. Policies and interventions should recognize the differential care needs associated with multimorbidity patterns to better provide person-centered care.

What determines informal care need among community-dwelling older adults in China? Results from a longitudinal study.

BACKGROUND: With an intensified aging population and an associated upsurge of informal care need in China, there is an ongoing discussion around what factors influence this need among older adults. Most existing studies are cross-sectional and do not focus on older people living in the community. Conversely, this study empirically explores the factors that affect informal care need of Chinese community-dwelling older individuals based on longitudinal data. METHODS: This study constructed panel data using the China Health and Retirement Longitudinal Research Study (CHARLS) from 2011 to 2018 for analysis. Generalized linear mixed models were used to analyze the factors affecting reception of informal care, and linear mixed models were used to analyze the factors affecting informal care sources and intensity. RESULTS: During the follow-up period, 7542, 6386, 5087, and 4052 older adults were included in 2011-2018, respectively. The proportion receiving informal care increased from 19.92 to 30.78%, and the proportion receiving high-intensity care increased from 6.42 to 8.42% during this period. Disability (estimate = 4.27, P < 0.001) and living arrangement (estimate = 0.42, P < 0.001) were the critical determinants of informal care need. The rural older adults reported a greater tendency to receive informal care (estimate = 0.14, P < 0.001). However, financial support from children did not affect informal care need (P > 0.05). CONCLUSIONS: At present, there is a great demand for the manpower and intensity of informal care, and the cost of informal care is on the rise. There are differences in informal care needs of special older groups, such as the oldest-old, living alone and severely disabled. In the future, the region should promote the balance of urban and rural care service resources, rationally tilt economic support resources to rural areas, reduce the inequality of long-term care resources, improve the informal care support system, and provide a strong community guarantee for the local aging of the older adults.

Applications to augment patient care for Internal Medicine specialists: a position paper from the EFIM working group on telemedicine, innovative technologies & digital health.

Telemedicine applications present virtually limitless prospects for innovating and enhancing established and new models of patient care in the field of Internal Medicine. Although there is a wide range of innovative technological solutions in Europe, there are overarching elements associated with such technologies when applied to the practices of Internal Medicine specialists. The European Federation of Internal Medicine (EFIM) strongly advocates for active leadership and influence from the Internal Medicine societies and specialist physicians across Europe in the development and application of telemedicine and digital technologies in healthcare. This position paper's conclusions were drawn via Delphi method, which was developed collaboratively from July 2021 to December 2023. The panel, consisting of experts in clinical medicine, public health, health economics and statistics, assessed various aspects related to telemedicine. Participants assigned scores on a Likert scale reflecting perceived value and potential risks. The findings were consolidated in a comprehensive checklist aligning with relevant literature and a SWOT analysis. Specifically, key issues that need to be addressed include promoting the professional development of e-health competencies in the healthcare and medical workforce, using educational campaigns to promote digital literacy among patients and caregivers, designing and implementing telemedicine applications tailored to local conditions and needs and considering the ethical and legal contexts under which these applications are employed. Importantly, there is currently no consensus on care models or standardized protocols among European Internal Medicine specialists regarding the utilization of telemedicine. This position paper aims to outline the opportunities and challenges associated with the application of telemedicine in Internal Medical practice in Europe.

A Measure of the Impact on Real-Time Patient Care of Evidence-based Medicine Logs.

Introduction: Evidence-based medicine (EBM) is a critical skill for physicians, and EBM competency has been shown to increase implementation of best medical practices, reduce medical errors, and increase patient-centered care. Like any skill, EBM must be practiced, receiving iterative feedback to improve learners' comprehension. Having residents document patient interactions in logbooks to allow for residency program review, feedback, and documentation of competency has been previously described as a best practice within emergency medicine (EM) to document practice-based learning (PBL) competency. Quantifying how residents use the information they query, locate, evaluate, and apply while providing direct patient care can measure the efficacy of EBM education and provide insight into more efficient ways of providing medical care. Methods: Practice-based learning logs were surveys created to record resident EBM activity on-shift and were placed into our residency management software program. Residents were required to submit 3-5 surveys of EBM activity performed during a 28-day rotation during which additional information was sought. This study included all PBL logs completed by EM residents from June 1, 2013-May 11, 2020. Using qualitative methodology, a codebook was created to analyze residents' free-text responses to the prompt: "Based on your research, would you have done anything differently?" The codebook was designed to generate a three-digit code conveying the effect of the researched information on the patient about whom the log was written, as well as whether the information would affect future patient care and whether these decisions were based on scientific evidence. Results: A total of 10,574 logs were included for primary analysis. In total, 1,977 (18.7%) logs indicated that the evidence acquired through research would affect future patient care. Of these, 392 (3.7%) explicitly stated that the EBM activity conducted as part of our project led to real-time changes in patient care in the ED and would change future management of patients as well. Conclusion: We present a proof of concept that PBL log activity can lead to integration of evidence-based medicine into real-time patient care. While a convenience sample, our cohort recorded evidence of both lifelong learning and application to patient care.

Acesso a serviço de saúde e reabilitação auditiva de adultos e idosos durante o período inicial da pandemia COVID-19 no Brasil / Access to health service and hearing rehabilitation for adult and older adults during the initial period of the COVID-19 pandemic in Brazil / Acceso a servicios de salud yrehabilitación auditiva para adultos y ancianos durante el período inicial de la pandemia COVID-19 en Brasil

Introdução: A perda auditiva é uma deficiência comum na população mundial e contribui para dificuldade na comunicação verbal e redução da qualidade de vida, evidenciando a importância da identificação precoce, reabilitação e acompanhamento audiológico dessa deficiência para mitigar suas consequências. Durante a pandemia da COVID-19, as medidas restritivas diminuíram a capacidade de atendimento dos serviços de saúde auditiva e dificultaram a busca de auxílio para resolver problemas relacionados à adaptação aos dispositivos eletrônicos de amplificação sonora (DAES), sendo uma barreira no processo de reabilitação da perda auditiva. Objetivo: Caracterizar os usuários de DEAS e o processo inicial de reabilitação auditiva de adultos e idosos e verificar fatores associados ao retorno para a consulta de monitoramento auditivo durante o período inicial da pandemia da COVID-19.Métodos: Estudo observacional transversal com usuários adultos e idosos de um serviço ambulatorial de saúde auditiva com retorno para consulta de monitoramento auditivo agendada no período inicial da implementação das medidas restritivas da pandemia da COVID-19 no Brasil. Resultados: A maioria dos participantes conseguiu retornou para a consulta de monitoramento auditivo, sendo eles em sua maioria idosos, do sexo feminino e vacinados contra a COVID-19. Houve maior prevalência de adaptação adequada aos DAES. Não houve associação estatística entre as variáveis relacionadas à adaptação aos DAES, COVID-19 e saúde mental e o retorno à consulta de monitoramento auditivo. Conclusão: Os fatores relacionados à adaptação aos DAES, à COVID-19 ou à saúde mental não influenciaram o retorno à consulta de monitoramento auditivo na presente pesquisa. (AU)

Introduction: Hearing loss is a common disability in the world population and contributes to difficulty in verbal communication and reduced quality of life, highlighting the importance of early identification, rehabilitation and audiological monitoring of this disability to mitigate its consequences. During the COVID-19 pandemic, restrictive measures reduced the service capacity of hearing health services and made it difficult to seek help to solve problems related to adaptation to personal sound amplification products (PSAPs), being a barrier in the rehabilitation process of hearing loss. Aim: To characterize PSAPs users and the initial hearing rehabilitation process for adults and elderly people and verify the factors associated with the return to hearing monitoring consultations in the initial period of the COVID-19 pandemic. Methods: Cross-sectional observational study with adults and elderly people: elderly users of an outpatient hearing health service who return for a scheduled hearing monitoring consultation in the initial period of the implementation of restrictive measures of the COVID-19 pandemic in Brazil. Results: Most participants were able to return to the hearing monitoring clinic, the majority of whom were elderly, female and vaccinated against COVID-19. There was a higher prevalence of adequate adaptation to the PSAPs. There was no statistical association between variables related to adaptation to PSAPs, COVID-19 and mental health and return to hearing monitoring consultation. Conclusion: Factors related to adaptation to PSAPs, COVID-19 or mental health did not influence the return to hearing monitoring consultation in the present investigation. (AU)

Introducción: La pérdida auditiva es una discapacidad común en la población mundial y contribuye a la dificultad en la comunicación verbal y a la reducción de la calidad de vida, destacando la importancia de la identificación temprana, rehabilitación y seguimiento audiológico de esta discapacidad para mitigar sus consecuencias. Durante la pandemia de COVID-19, las medidas restrictivas redujeron la capacidad de atención de los servicios de salud auditiva y dificultaron la búsqueda de ayuda para resolver problemas relacionados con la adaptación a dispositivos electrónicos de amplificación del sonido (DEAS), siendo una barrera en el proceso de rehabilitación de la pérdida auditiva. Objetivo: Caracterizar a los usuarios de DEAS y el proceso inicial de rehabilitación auditiva de adultos y ancianos y verificar los factores asociados al retorno a las consultas de monitorización auditiva en el período inicial de la pandemia COVID-19. Métodos: Estudio observacional transversal con adultos y ancianos: ancianos usuarios de un servicio ambulatorio de salud auditiva que regresan para consulta de monitorización auditiva programada en el período inicial de la implementación de medidas restrictivas de la pandemia de COVID-19 en Brasil. Resultados: La mayoría de los participantes pudieron regresar a la clínica de monitorización auditiva, la mayoría de los cuales eran ancianos, mujeres y estaban vacunados contra COVID-19. Hubo mayor prevalencia de adaptación adecuada a la DEAS. No hubo asociación estadística entre variables relacionadas con adaptación a DEAS, COVID-19 y salud mental y retorno a consulta de monitorización auditiva. Conclusión: Los factores relacionados con la adaptación a DEAS, el COVID-19 o la salud mental no influyeron en el retorno a la consulta de monitorización auditiva en la presente investigación. (AU)

Application of ChatGPT for Orthopedic Surgeries and Patient Care.

Artificial intelligence (AI) has rapidly transformed various aspects of life, and the launch of the chatbot "ChatGPT" by OpenAI in November 2022 has garnered significant attention and user appreciation. ChatGPT utilizes natural language processing based on a "generative pre-trained transfer" (GPT) model, specifically the transformer architecture, to generate human-like responses to a wide range of questions and topics. Equipped with approximately 57 billion words and 175 billion parameters from online data, ChatGPT has potential applications in medicine and orthopedics. One of its key strengths is its personalized, easy-to-understand, and adaptive response, which allows it to learn continuously through user interaction. This article discusses how AI, especially ChatGPT, presents numerous opportunities in orthopedics, ranging from preoperative planning and surgical techniques to patient education and medical support. Although ChatGPT's user-friendly responses and adaptive capabilities are laudable, its limitations, including biased responses and ethical concerns, necessitate its cautious and responsible use. Surgeons and healthcare providers should leverage the strengths of the ChatGPT while recognizing its current limitations and verifying critical information through independent research and expert opinions. As AI technology continues to evolve, ChatGPT may become a valuable tool in orthopedic education and patient care, leading to improved outcomes and efficiency in healthcare delivery. The integration of AI into orthopedics offers substantial benefits but requires careful consideration and continuous improvement.

Enhancing Hospital Efficiency and Patient Care: Real-Time Tracking and Data-Driven Dispatch in Patient Transport.

Inefficient patient transport in hospitals often leads to delays, overworked staff, and suboptimal resource utilization, ultimately impacting patient care. Existing dispatch management algorithms are often evaluated in simulation environments, raising concerns about their real-world applicability. This study presents a real-world experiment that bridges the gap between theoretical dispatch algorithms and real-world implementation. It applies process capability analysis at Taichung Veterans General Hospital in Taichung, Taiwan, and utilizes IoT for real-time tracking of staff and medical devices to address challenges associated with manual dispatch processes. Experimental data collected from the hospital underwent statistical evaluation between January 2021 and December 2021. The results of our experiment, which compared the use of traditional dispatch methods with the Beacon dispatch method, found that traditional dispatch had an overtime delay of 41.0%; in comparison, the Beacon dispatch method had an overtime delay of 26.5%. These findings demonstrate the transformative potential of this solution for not only hospital operations but also for improving service quality across the healthcare industry in the context of smart hospitals.

Patient care and access to clinical trials in gynaecological oncology: global implications of the early phase of the COVID-19 pandemic.

PURPOSE: Our prospective international survey evaluated the impact of the early phase of the COVID-19 pandemic on the management gynaecological malignancies from the multidisciplinary physicians' perspective with particular focus on clinical infrastructures and trial participation. METHODS: Our survey consisted of 53 COVID-related questions. It was sent to healthcare professionals in gynaecological oncology centres across Europe and Pan-Arabian region via the study groups and gynaecological societies from April 2020 to October 2020. All healthcare professionals treating gynaecological cancers were able to participate in our survey. RESULTS: A total of 255 answers were collected from 30 countries. The majority (73%) of participants were gynaecological oncologists from university hospitals (71%) with at least an Intensive Care Unit with cardiopulmonary support available at their institutions. Most institutions continued to perform elective surgeries only for oncological cases (98%). Patients had to wait on average 2 weeks longer for their surgery appointments compared to previous years (range 0-12 weeks). Most cases that were prioritised for surgical intervention across all gynaecological tumours were early-stage disease (74%), primary situation (61%) and good ECOG status (63%). The radicality of surgery did not change in the majority of cases (78%) across all tumour types. During the pandemic, only 38% of clinicians stated they would start a new clinical trial. Almost half of the participants stated the pandemic negatively impacted the financial structure and support for clinical trials. Approximately 20% of clinicians did not feel well-informed regarding clinical algorithm for COVID-19 patients throughout the pandemic. Thirty percent stated that they are currently having trouble in providing adequate medical care due to staff shortage. CONCLUSION: Despite well-established guidelines, pandemic clearly affected clinical research and patientcare. Our survey underlines the necessity for building robust emergency algorithms tailored to gynaecological oncology to minimise negative impact in crises and to preserve access to clinical trials.

How does robotic surgery affect gynecology patient care?

The aim of this review is to map the current research on the needs of gynecological patients treated with robotic surgery. Systematic Rapid Review. Pubmed, Web of Science, Google Scholar. Search was limited from the years 2017-2021. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement was followed. Rapid review is a synthesis of information produced in a shorter time than systematic reviews, which allows clinical nurses to access evidence in the decision-making process. The methodological steps implemented were the following: (1) needs assessment and topic selection, (2) study development, (3) literature search, (4) screening and study selection, (5) data extraction, (6) risk-of-bias assessment and (7) knowledge synthesis. The search yielded 815 articles, 746 were excluded after screening the title and abstract, and 69 full-text syntheses were performed. Only 10 articles were included in the final analysis. This research evaluated the effects of robotic surgery on the patient under seven themes; operative time, length of stay, complications, estimated blood loss, pain, survivor, and conversion. Five studies were on endometrial cancer, one study on gynecologic cancer, two studies on hysterectomy, one study on patient safety, and one study on cervical cancer. The results show that robotic surgery can change the needs of patients by solving ongoing problems in gynecological patients. This requires a better understanding of robotic surgery procedures while facilitating nursing care over patient care.

Evidence-based nursing practice and improving pediatric patient care outcomes in the prevention of infection transmission: Emergency department findings.

BACKGROUND: Reducing the risk of infection transmission by getting emergency care for pediatric patients is a challenging task. AIM: The study aim was to assess emergency nurses' readiness to provide care for pediatric patients with infectious diseases. METHOD: Two hundred Jordanian emergency department nurses were surveyed using a descriptive design. RESULTS: The study revealed that insufficient safety and infection control procedures were put into place, starting with family support to allow nurses to work 145 (78%), family care plans intended to assist caregivers 139 (74.7%), the availability of respiratory protection and a backup plan for standard precautions, training requirements, and equipment 131 (70.4%), create a unit pandemic safety strategy 124 (66.7%), have a plan for emergencies for at-risk staff 116 (62.4%), have a hospital pandemic safety plan 113 (60.8%), manage inventory 102 (54.8%), use reuse guidelines if there will be severe shortages 99 (53.2%), create a strategy for nurses' access to healthcare for themselves and their families 96 (51.6%), and end with any required system updates for new policies 88 (47.3%). Staff nurses made up a large proportion of participants (145; 78%; 115; 62.8%) who said they lacked experience with care for pediatric patients with infectious illnesses who were critically sick. A 62.8% of nurses reported they did not have training in infectious disease emergency prevention and control for pediatric patients. What nurses prioritize it was determined that the concept of crisis standards of care (34.9%) was the most important educational topic for training emergency room nurses to care for pediatric patients who are critically ill with infectious infections, while the clarity of communication pathways was ranked lowest. CONCLUSION: More training and support are needed for emergency room nurses to properly care for children's patients with infectious illnesses.

Depends on whom you ask: Discordance in reporting spousal care between older women and men across European welfare states.

PURPOSE: We aim to investigate systematic differences in reporting spousal care between caregivers and cared-for persons and their possible effects for the analysis of care regimes and correlation of care with health. MATERIALS AND METHODS: Using information on care provided/received from the Survey on Health, Ageing and Retirement in Europe (SHARE), we estimate the prevalence of spousal care and discordance between caregivers and cared-for persons in the reporting of care among caregiving dyads. Multinomial regressions are used to estimate systematic differences in reporting spousal care. We then use multivariable logistic regressions to assess the association between discordance in reporting informal care and carer's self-rated health (SRH) and depression using the EURO-D scale. RESULTS: Only 53.9 % of dyads report care that is confirmed by both spouses. Multinomial regressions show that agreement on care being provided/received is more common when women are caregivers, while men are likely to underreport when providing or receiving personal care. Prevalence of spousal care across care regimes is sensitive to who reports care. There is no effect on the association of care with SRH regardless of who identifies the carer, while the magnitude and statistical significance of the association between depression symptoms and care varies according to the choice of respondent. CONCLUSIONS: Informal care may be understated across Europe when relying solely on carer self-identification through description of tasks in surveys. From a policy standpoint, relying on self-identification of carers to access support or social benefits may potentially reduce the take-up of such benefits or support.

Translating, adapting, and validating the medical student version of the patient care ownership scale for use in Japan.

BACKGROUND: Patient care ownership (PCO) among medical students is a growing area in the field of medical education. While PCO has received increasing attention, there are no instruments to assess PCO in the context of Japanese undergraduate medical education. This study aimed to translate, culturally adapt, and validate the PCO Scale - Medical students (PCOS-S) in the Japanese context. METHODS: We collected survey data from fifth- and sixth-grade medical students from five different universities varying in location and type. Structural validity, convergent validity, and internal consistency reliability were examined. RESULTS: Data from 122 respondents were analyzed. Factor analysis of the Japanese PCOS-S revealed three factors with Cronbach's alpha values exceeding the satisfactory criterion (0.70). A positive correlation was observed between the total Japanese PCOS-S scores and the global rating scores for the clinical department as a learning environment (Pearson's correlation coefficient = 0.61). CONCLUSIONS: We conducted the translation of the PCOS-S into Japanese and assessed its psychometric properties. The Japanese version has good reliability and validity. This instrument has potential value in assessing the development of medical students' PCO.