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1.
Environ Int ; 191: 108989, 2024 Aug 29.
Artículo en Inglés | MEDLINE | ID: mdl-39241334

RESUMEN

Antibiotic resistance genes (ARGs) persistence and potential harm have become more widely recognized in the environment due to its fast-paced research. However, the bibliometric review on the detection, research hotspot, and development trend of environmental ARGs has not been widely conducted. It is essential to provide a comprehensive overview of the last 30 years of research on environmental ARGs to clarify the changes in the research landscape and ascertain future prospects. This study presents a visualized analysis of data from the Web of Science to enhance our understanding of ARGs. The findings indicate that solid-phase extraction provides a reliable method for extracting ARG. Technological advancements in commercial kits and microfluidics have facilitated the efficacy of ARGs extraction with significantly reducing processing times. PCR and its derivatives, DNA sequencing, and multi-omics technology are the prevalent methodologies for ARGs detection, enabling the expansion of ARG research from individual strains to more intricate microbial communities in the environment. Furthermore, due to the development of combination, hybridization and mass spectrometer technologies, considerable advancements have been achieved in terms of sensitivity and accuracy as well as lowering the cost of ARGs detection. Currently, high-frequency terms such as "Antibiotic Resistance, Antibiotics, and Metagenomics" are the center of attention for study in this area. Prominent topics include the investigation of anthropogenic impacts on environmental resistance, as well as the dynamics of migration, dissemination, and adaptation of environmental ARGs, etc. The research on environmental ARGs has made significant advancements in the fields of "Microbiology" and "Biotechnology Applied Microbiology". Over the past decade, there has been a notable increase in the fields of "Environmental Sciences Ecology" and "Engineering" with a similar growth trend observed in "Water Resources". These three domains are expected to continue driving extensive study within the realm of environmental ARGs.

2.
Mult Scler ; : 13524585241274580, 2024 Sep 17.
Artículo en Inglés | MEDLINE | ID: mdl-39286941

RESUMEN

BACKGROUND AND OBJECTIVES: This survey study aimed to (1) identify patient/family research priorities in pediatric-onset multiple sclerosis (POMS), and (2) delineate optimized methods for research study/clinical trials design, engagement, and implementation. METHODS: Participants were as follows: (1) parents of a child (<18 years) with POMS enrolled in a national registry, (2) adolescents (13-17 years) with POMS in the registry, and (3) adults (18-40 years) with POMS receiving care at a registry affiliated clinic. Of 293 eligible participants, 192 completed surveys. RESULTS: Experiences with health care and medications were generally positive but there remain areas of priority improvement. Incentives to participate in clinical trials included medications previously tested and in pill form, bloodwork/study visits required ⩾ every 3 months, cognitive testing ⩽1 hour, compensation for travel and time, ability to continue current multiple sclerosis (MS) medication, option to take study medication if on placebo, and individualized study feedback. Priorities for clinical research were (1) psychosocial impact, (2) cognitive/academic impact, (3) environmental risk, and (4) nutrition. CONCLUSIONS: Results highlighted the importance of a holistic approach to study design and a focus on the impact of disease on daily life to best engage patients and families in POMS clinical trials and research.

3.
Hernia ; 2024 Aug 27.
Artículo en Inglés | MEDLINE | ID: mdl-39190257

RESUMEN

PURPOSE: Numerous clinical practice guidelines and consensus statements have been published in hernia surgery, however, there is still a need for high-quality evidence to address remaining unanswered questions. The aim of this study was to conduct research priority setting through a modified Delphi process to identify a list of top research priorities in hernia surgery. METHODS: A structured literature review of clinical practice guidelines was performed by the steering committee. Topics considered clinically significant, practical to study and lacking strong evidence were extracted and refined into a comprehensive list, then entered into a two-round Delphi survey for prioritization at the Abdominal Core Health Quality Collaborative (ACHQC) Quality Improvement Summit. In round 1, participants were instructed to select any topic that should be prioritized for future research. Topics were ranked according to the proportion of votes and the 25 highest-ranking topics were included in the second round. In round 2, participants were instructed to select only the top 10 topics for research prioritization. RESULTS: Eleven clinical practice guidelines were reviewed. Eighty-seven topics were extracted by the steering committee and submitted for prioritization. After the first round, 25 of the highest-ranking topics were determined and included in the second round. A final list of 11 research questions was identified. The hernia types with the most research interest were inguinal and epigastric/umbilical hernias. Other topics of high interest were the management of diastasis recti, primary versus mesh repairs and expectant management versus surgical repair. CONCLUSION: Our study provides a research agenda generated through expert consensus that may be used in the prioritization of the design and funding of clinical trials in hernia surgery.

4.
Autism Adulthood ; 6(2): 141-151, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-39139510

RESUMEN

Background: Previous studies of community priorities for autism research have been limited by low representation of autistic people and thus a bias toward the views of families and professionals. We aimed to determine the first community-led priorities for autism research in Aotearoa New Zealand (NZ). Methods: Autistic people were essential partners in the project, from inception and design through to methods and outputs. We gathered the views of the autistic and autism communities (including family, practitioners, and researchers) through focus groups (n = 55) and an online survey (n = 450). Almost 40% of the survey respondents indicated that they were autistic. Results: The findings across the focus groups and survey highlighted the importance of research that centralizes the experiences and needs of autistic people, particularly of autistic New Zealanders, including culturally specific research for Maori and Pacific peoples. All five priority topics for autistic adults were also priorities for at least one other group: (1) Health, mental health, and well-being of autistic people (all groups); (2) Services across the life span (autistic adults, health care/disability, and education practitioners); (3) Needs of autistic people in Aotearoa NZ (autistic adults, whanau); (4) Perspectives from autistic people with a diverse range of support needs (autistic adults; education practitioners); (5) Quality of life of autistic people in Aotearoa NZ (autistic adults; health care/disability practitioners). Conclusions: We discuss the advantages of autistic involvement in research, and how these community priorities can inform future research and policy in NZ.


Why is this an important issue? There are no previous autism research priorities for Aotearoa New Zealand that have been determined by the autistic and autism communities. The population characteristics and social and cultural context of Aotearoa New Zealand (NZ) are unique. What was the purpose of this study? We wanted to find out what the autistic and autism communities think future autism research should focus on. What did the researchers do? Autistic people were essential partners in this project and contributed to the design, methods, and outputs. We carried out focus groups and an online survey of autistic people and members of the broader autism community (family, practitioners, and researchers) in NZ. In the focus groups, we asked 55 people what they thought future autism research in NZ should focus on. Three researchers (one autistic and two non-autistic) analyzed the focus group data. They read the written transcripts of the focus groups. Then, they met multiple times to talk about what they thought the ideas were and agree on the final ideas (themes). In the online survey, we asked 450 people to rate how important different autism research topics were to them. To analyze the survey data, two researchers looked at how important each autism research topic was for different community groups, including autistic adults, family, practitioners, and researchers. What were the results of the study? The results showed that the community thought future autism research should focus on the experiences of autistic people, particularly of autistic New Zealanders. Community members also thought that it was important that there is autism research that is specific to NZ, including culturally specific research for Maori and Pacific peoples. The five topics rated as most important by autistic adults were also priorities for at least one other group of people from the autism community (e.g., practitioners). Health, mental health, and well-being of autistic people was a priority topic for all groups. What do these findings add to what was already known? These findings tell us what autistic adults think is important for future autism research in NZ to focus on. The findings also show us the similarities and differences between what autistic adults think is important for future autism research, and what other people in the broader autism community think is important. What are the potential weaknesses in the study? The focus groups and online survey may not have been accessible to everyone who would like to take part. So we may have missed the opinion of some people. How will these findings help autistic adults now or in the future? We have determined what is important to autistic people and the broader autism community for future autism research. We can use this information to inform future autism research in NZ. Funding bodies can use this information to inform their decisions about funding for autism research. We hope that the way we included autistic adults in this project will also inspire other autism research in NZ, which will make autism research more appropriate, relevant, and ethical.

5.
BMC Palliat Care ; 23(1): 194, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39090640

RESUMEN

BACKGROUND: A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. METHOD: Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. RESULTS: A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. CONCLUSION: The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.


Asunto(s)
Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/tendencias , Colombia , Investigación/tendencias , Prioridades en Salud/tendencias
6.
Am J Respir Crit Care Med ; 210(6): 715-729, 2024 Sep 15.
Artículo en Inglés | MEDLINE | ID: mdl-39133888

RESUMEN

Background: Individuals with chronic obstructive pulmonary disease (COPD) are often at risk for or have comorbid cardiovascular disease and are likely to die of cardiovascular-related causes. Objectives: To prioritize a list of research topics related to the diagnosis and management of patients with COPD and comorbid cardiovascular diseases (heart failure, atherosclerotic vascular disease, and atrial fibrillation) by summarizing existing evidence and using consensus-based methods. Methods: A literature search was performed. References were reviewed by committee co-chairs. An international, multidisciplinary committee, including a patient advocate, met virtually to review evidence and identify research topics. A modified Delphi approach was used to prioritize topics in real time on the basis of their potential for advancing the field. Results: Gaps spanned the translational science spectrum from basic science to implementation: 1) disease mechanisms; 2) epidemiology; 3) subphenotyping; 4) diagnosis and management; 5) clinical trials; 6) care delivery; 7) medication access, adherence, and side effects; 8) risk factor mitigation; 9) cardiac and pulmonary rehabilitation; and 10) health equity. Seventeen experts participated, and quorum was achieved for all votes (>80%). Of 17 topics, ≥70% agreement was achieved for 12 topics after two rounds of voting. The range of summative Likert scores was -15 to 25. The highest priority was "Conduct pragmatic clinical trials with patient-centered outcomes that collect both pulmonary and cardiac data elements." Health equity was identified as an important topic that should be embedded within all research. Conclusions: We propose a prioritized research agenda with the purpose of stimulating high-impact research that will hopefully improve outcomes among people with COPD and cardiovascular disease.


Asunto(s)
Enfermedades Cardiovasculares , Enfermedad Pulmonar Obstructiva Crónica , Humanos , Enfermedad Pulmonar Obstructiva Crónica/terapia , Enfermedad Pulmonar Obstructiva Crónica/complicaciones , Enfermedades Cardiovasculares/terapia , Enfermedades Cardiovasculares/epidemiología , Estados Unidos/epidemiología , Sociedades Médicas , Técnica Delphi , Comorbilidad , Investigación Biomédica
7.
Health Res Policy Syst ; 22(1): 100, 2024 Aug 09.
Artículo en Inglés | MEDLINE | ID: mdl-39123273

RESUMEN

BACKGROUND: Paramedicine is a dynamic profession which has evolved from a "treat and transport" service into a complex network of health professionals working in a diverse range of clinical roles. Research is challenging in the paramedicine context, and internationally, research capacity and culture has developed slowly. International examples of research agendas and strategies in paramedicine exist, however, research priorities have not previously been identified in Ireland. METHODS: This study was a three round electronic modified Delphi design which aimed to establish the key aspects of the research priorities via end-user consensus. Participants included interested stakeholders involved in prehospital care or research in Ireland. The first round questionnaire consisted of open-ended questions with results coded and developed into themes for the closed-ended questions used in the second and third round questionnaires. A consensus level of 70% was set a priori for second and third rounds. RESULTS: Research Priorities that reached consensus included Staff Wellbeing, Education and Professionalism and Acute Medical Conditions. Respondents indicated that these three areas should be a priority in the next 2 years. Education, Staffing and Leadership were imperative Key Resources that required change. Education was a Key Processes change deemed imperative to allow the future research to occur. Outcomes that should be included in the future research strategy were Patient Outcomes, Practitioner Development, Practitioner Wellbeing, Alternate Pathways, Evidence-based Practice and Staff Satisfaction. CONCLUSION: The results of this study are similar to previously published international studies, with some key differences. There was a greater emphasis on Education and Practitioner Wellbeing with the latter possibly attributed to the timing of the research in relation to the COVID-19 pandemic. The disseminated findings of this study should inform sustainable funding models to aid the development of paramedicine research in Ireland.


Asunto(s)
Técnica Delphi , Paramedicina , Humanos , Técnicos Medios en Salud , Consenso , COVID-19 , Servicios Médicos de Urgencia/organización & administración , Práctica Clínica Basada en la Evidencia/organización & administración , Personal de Salud , Irlanda , Liderazgo , Profesionalismo , Investigación , Encuestas y Cuestionarios
8.
Cureus ; 16(7): e64540, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-39144876

RESUMEN

BACKGROUND:  Nurses play a significant role in contributing to various health priorities globally, including research. Identifying the status of national nursing research priorities in the Eastern Mediterranean Region is crucial to cultivating these priorities. This expert opinion paper highlights the existing status of national nursing research priorities in Eastern Mediterranean Region countries concerning their existence and publicity. METHODS:  Experts from nine Eastern Mediterranean Region countries, including Egypt, Iran, Iraq, Jordan, Pakistan, Palestine, Qatar, Oman, and Saudi Arabia, contributed to this report. They participated by completing a cross-sectional survey and providing a narrative description of their opinions. RESULTS:  The findings revealed that 58% of the participating countries have existing national nursing research priorities, while 25.8% do not, and 16% are under development. Governmental organizations developed the largest portion of the priorities (38%). Midwives were not considered in half of the published priorities. The vast majority of national nursing research priorities (65%) were developed by experts' opinions and consensus, and 33% only have an associated strategy, outcome measures, and/or funding opportunities. Generally, most published research priorities were not updated regularly. CONCLUSION:  Eastern Mediterranean Region countries face a challenge with the need for more nurses, which may hinder their involvement in research projects or continued education. Despite this, all countries involved in this report emphasized the importance of developing nursing education and research as priorities for improving their current nursing workforce. Health policymakers, nurse practitioners, academic researchers, educators, and nursing leaders should collaborate to develop operational plans to foster national nursing education and research.

9.
J Psychosom Res ; 186: 111890, 2024 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-39208476

RESUMEN

OBJECTIVE: Experiencing physical symptoms that are medically not yet explained (MNYES) is associated with considerable burden in daily life. Research priorities in this area have been primarily investigator-driven. The present study identifies the top 10 research priorities, incorporating the views of patients, carers and healthcare professionals. METHODS: This study used the Priority Setting Partnership approach in collaboration with the James Lind Alliance (JLA). The priority setting approach combines survey-based data from patients with a specific disorder/condition and relevant stakeholders (i.e., caregivers and healthcare professionals) with input from group meetings and a final priority setting consensus meeting. There were three consecutive phases: (1) online survey with an open-ended question to collect topics for future scientific research (N = 345 participants); (2) an online survey among stakeholders to prioritise the research questions generated in Phase 1 (N = 400); and (3) a final multi-stakeholder consensus meeting, held over two half-days to determine the final top 10 research priorities for the Netherlands (day 1 N = 25, day 2 N = 24). RESULTS: Phase 1 resulted in 572 topics, which were reduced to 37 summary research questions. Phase 2 resulted in 18 research priorities, that were ranked and the top 10 priorities were established during the final consensus meeting. The top 10 research priorities included three main themes: optimising efficient diagnosis and treatment, aetiology and prevention, and coping with MNYES. CONCLUSION: The top 10 priorities provide insight into what is most important for future research into MNYES from the perspective of patients, carers and healthcare professionals.


Asunto(s)
Cuidadores , Personal de Salud , Humanos , Cuidadores/psicología , Países Bajos , Personal de Salud/psicología , Masculino , Femenino , Adulto , Persona de Mediana Edad , Encuestas y Cuestionarios , Investigación , Anciano , Consenso , Participación de los Interesados , Pacientes/psicología , Prioridades en Salud
10.
Health Expect ; 27(1): e13944, 2024 02.
Artículo en Inglés | MEDLINE | ID: mdl-39102736

RESUMEN

INTRODUCTION: Ethnic minority populations experience significant health and social care disparities; despite experiencing a greater burden of diseases, these groups are underrepresented in health and social care research. Consequently, related research can be less applicable to these population groups. The REPRESENT study aims to explore the health and social care experiences of ethnic minorities and other minoritised populations, their research interests and appropriate research practices. METHODS: Focus groups and semistructured interviews were conducted between May and September 2022 with members of a number of ethnic minority communities in England. Data were audio recorded, transcribed and thematically coded using NVivo 12. Rigour was determined through extensive sampling, iterative data collection and analysis. FINDINGS: Fifty-two ethnic minority members were engaged in group interviews and one-to-one interviews. Participants included representatives of the following groups: African Caribbean, Eastern European, Gypsy Travellers, Lesbian, Gay, Bisexual, Transgender, Queer, Intersex and Asexual+, Refugee/Asylum Seekers, Somali and South Asian communities. Interviews were also conducted with ethnic minority healthcare providers and researchers. Three overarching categories were identified: health information, medical service experiences, health and social care concerns and health research. Health and social care services challenges were mostly attributed to discrimination, delayed services, poor cultural relevance and language and cultural barriers. The most influential information sources were local community organisations and word-of-mouth. The main health and social care concerns were chronic long-term health conditions, mental health, maternal health and child development. Recommendations for research involved understanding the motivations for participation, improving communication and empowering communities. Top research priorities were long-term health conditions, health promotion and education, early care interventions and understanding community needs. INTERPRETATION: Discrimination and bias in health and social care provision have severe implications for worsening ethnic health inequalities. Healthcare commissioning authorities and policymakers can leverage the preference of ethnic minority groups for pharmacy services and community organisations to improve access to care. Improving research interest and engagement requires understanding individual community needs, community sensitivity, research relevance and cultural appropriateness. PATIENT OR PUBLIC CONTRIBUTION: Members of ethnic minority Patient and Public Involvement and Engagement group and Community Advisory Board supported the REPRESENT study design, conceptualisation and report development.


Asunto(s)
Grupos Focales , Humanos , Femenino , Masculino , Entrevistas como Asunto , Minorías Étnicas y Raciales , Adulto , Reino Unido , Etnicidad/psicología , Grupos Minoritarios/psicología , Persona de Mediana Edad , Investigación Cualitativa , Disparidades en Atención de Salud/etnología , Inglaterra
11.
medRxiv ; 2024 Aug 16.
Artículo en Inglés | MEDLINE | ID: mdl-39185520

RESUMEN

Sex chromosome aneuploidies (SCAs) are chromosomal variations that result from an atypical number of X and/or Y chromosomes. Combined, SCAs affect ~1/400 live births, including individuals with Klinefelter syndrome (47,XXY), Turner syndrome (45,X and variants), Double Y syndrome (47,XYY), Trisomy X (47,XXX), and rarer tetrasomies and pentasomies. Individuals with SCAs experience a wide variety of physical health, mental health, and healthcare experiences that differ from the standard population. To understand the priorities of the SCA community we surveyed participants in two large SCA registries, the Inspiring New Science in Guiding Healthcare in Turner Syndrome (INSIGHTS) Registry and the Generating Advancements in Longitudinal Analysis in X and Y Variations (GALAXY) Registry. 303/629 (48.1% response rate) individuals from 13 sites across the United States responded to the survey, including 251 caregivers and 52 self-advocates, with a range of ages from 3 weeks to 73 years old and represented SCAs including Turner syndrome, XXX, XXY, XYY, XXYY, and combined rare tetrasomies and pentasomies. Results demonstrate the priorities for physical health and emotional/behavioral health identified by the SCA community, as well as preferred types of research. All SCA subtypes indicated intervention studies as the top priority, emphasizing the need for researchers to focus on clinical treatments in response to priorities of the SCA community.

12.
Disabil Rehabil ; : 1-10, 2024 Jul 24.
Artículo en Inglés | MEDLINE | ID: mdl-39049529

RESUMEN

PURPOSE: To identify research priorities related to COVID rehabilitation from the perspectives of persons with lived experiences, clinicians, researchers, community organization and policy representatives. MATERIALS & METHODS: We conducted five international consultations to identify key issues and research priorities in COVID rehabilitation using (i) web-based questionnaires, (ii) synchronous discussions, and (iii) content analysis of COVID rehabilitation research conference presentations. We collated responses and notes and then analyzed data using content analytical techniques. RESULTS: The Framework of Research Priorities in COVID Rehabilitation includes five priorities that span health and disability across COVID-19 and Long COVID illness trajectories: (1) understanding experiences of episodic disability; (2) assessing episodic disability; (3) identifying and examining safe approaches to rehabilitation; (4) examining the role, implementation, and impact of models of rehabilitation care; and (5) examining access to safe, timely and appropriate rehabilitation and other health care provider services. The Framework identifies target populations, methodological considerations, and highlights the importance of integrated knowledge translation and exchange in advancing scientific evidence, clinical education, practice, and COVID rehabilitation policy. CONCLUSIONS: This Framework provides a foundation to advance COVID, disability and rehabilitation research to advance the health and well-being of persons with COVID-19, Long COVID, and their caregivers.Implications for rehabilitationPersons with COVID-19 or Long COVID and their caregivers may experience multi-dimensional forms of disability spanning physical, cognitive, emotional health challenges, difficulties with daily function, and social inclusion, which individually and/or collectively may be unpredictable, episodic and/or chronic in nature.Rehabilitation has a role in preventing or mitigating disability and enhancing health outcomes for persons with COVID-19, Long COVID and their caregivers.The Framework of Research Priorities COVID Rehabilitation includes five overlapping research priorities spanning health and disability across COVID trajectories: (1) understanding experiences of episodic disability; (2) assessing episodic disability; (3) identifying and examining safe approaches to rehabilitation; (4) examining the role, implementation, and impact of models of rehabilitation care; and (5) examining access to safe, timely and appropriate rehabilitation and other health care provider services.The research priorities in the Framework represent a comprehensive approach to examine disability and rehabilitation across COVID illness trajectories and the broad continuums of rehabilitation care to provide a coordinated and collaborative approach to advancing evidence in COVID disability and rehabilitation.This Framework provides a foundation for international and interdisciplinary collaborations, to advance COVID disability and rehabilitation research to enhance health outcomes of persons with COVID-19, Long COVID, and their caregivers.

13.
J Palliat Care ; : 8258597241264455, 2024 Jul 26.
Artículo en Inglés | MEDLINE | ID: mdl-39056368

RESUMEN

OBJECTIVE: Identifying research priorities is very important for palliative and end-of-life care to ensure research is focused on evidence gaps. This project aimed to identify and prioritise palliative and end-of-life care research areas within the West Midlands region in United Kingdom (UK). METHODS: A modified Delphi technique approach was used with palliative care stakeholders. The first round was item generation via rapid interviews. Data were analysed using content analysis and all the items were grouped into main categories. For round two, an online survey was conducted to present all the items from round one, and stakeholders were asked to rate the priority of items on a Likert-type scale (1 = not a priority to 7 = essential priority). Items that achieved consensus in round two were presented to the third round, where stakeholders ranked them in descending order. RESULTS: We completed and analysed 56 rapid interviews which resulted in 158 research items under 15 categories. The research items were rated by 30 stakeholders and seven items which reached consensus were subsequently ranked in order by 45 stakeholders. The highest ranked item was 'Integrated care systems to prevent crisis', followed by three research items related to 'equity' in palliative care. CONCLUSIONS: Our research priorities, although unique for our region, mirror previously research priorities from other regions and countries. This suggests issues of integration and equity in palliative and end-of-life care remain unresolved, despite ongoing initiatives and research to address these issues.

14.
Implement Sci Commun ; 5(1): 78, 2024 Jul 18.
Artículo en Inglés | MEDLINE | ID: mdl-39026346

RESUMEN

BACKGROUND: There has been increased attention to the need for, and the positive impact of, engaged or participatory science in recent years. Implementation scientists have an opportunity to leverage and contribute to engagement science (ES) through the systematic integration of engagement into implementation science (IS). The purpose of this study was to gather information from researchers and others to develop a prioritized list of research needs and opportunities at the intersection of IS and ES. METHODS: We conducted three Zoom-based focus groups with 20 researchers to generate a list of unmet needs, barriers, and to describe normative themes about use of ES and IS. Then a panel of nine experts in IS and/or engagement ranked the needs and barriers using a survey and met via a Zoom meeting to discuss and generate research opportunities and questions, with reference to the focus group outputs. RESULTS: Respondents and experts concurred on the importance of engagement in IS. Focus group participants reported 28 needs and barriers under the themes of 1) need for best practice guidance related to engagement processes and outcomes and 2) structural barriers to integrating ES in IS. The expert panel prioritized six structural barriers and four barriers related to generating best practice guidance, with corresponding recommendations on research opportunities. Example research opportunities related to engagement processes included: define "successful" engagement in IS contexts; adapt engagement tools and best practices from other disciplines into IS. Example research opportunities related to outcomes included: assess the impact of engagement on IS outcomes; examine engagement practices that lead to optimal engaged research. Example research opportunities related to structural barriers included: leverage research evidence to create structural changes needed to expand support for engaged IS; examine factors that influence institutional buy-in of engagement in IS. CONCLUSIONS: Research needs exist that relate to engagement processes, outcomes, and structural barriers, even for scientists who value engaged research. Expert panelists recommended sequential and reinforcing research opportunities that implementation and engagement scientists can tackle together to advance both fields and health equity. Future work should assess insights from broader invested parties, particularly patients and community members.

15.
BJPsych Bull ; : 1-7, 2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38949259

RESUMEN

AIMS AND METHOD: Dementia in-patient units (DIU) are mental health wards that care for people living with dementia (PLWD) whose symptoms are causing severe distress or potential risk. DIUs look after some of the most vulnerable and unwell people in society, yet they are environments that are underresearched: a recent systematic review revealed only 36 articles worldwide relating to DIUs. To better understand research priorities in DIUs, we undertook a two-round online Delphi survey of PLWD with experience of DIUs, their carers and professionals who work in DIUs. RESULTS: Ten research priorities were described and ranked. The top three were how to use non-pharmacological techniques to manage non-cognitive symptoms of dementia, supporting families and better understanding of how to discharge PLWD safely and healthily. CLINICAL IMPLICATIONS: This is the first Delphi consensus to describe DIU research priorities. This paper will help researchers focus on the areas that matter most to people who use DIUs.

16.
Artículo en Inglés | MEDLINE | ID: mdl-38914917

RESUMEN

PURPOSE: To use robust consensus methods with individuals with lived breast cancer experience to agree the top 10 research priorities to improve information and support for patients undergoing breast cancer surgery in the UK. METHODS: Research uncertainties related to information and support for breast cancer surgery submitted by patients and carers were analysed thematically to generate summary questions for inclusion in an online Delphi survey. Individuals with lived breast cancer experience completed two Delphi rounds including feedback in which they selected their top 10 research priorities from the list provided. The most highly ranked priorities from the survey were discussed at an in-person prioritisation workshop at which the final top 10 was agreed. RESULTS: The 543 uncertainties submitted by 156 patients/carers were categorised into 63 summary questions for inclusion in the Delphi survey. Of the 237 individuals completing Round 1, 190 (80.2%) participated in Round 2. The top 25 survey questions were carried forward for discussion at the in-person prioritisation workshop at which 17 participants from across the UK agreed the final top 10 research priorities. Key themes included ensuring patients were fully informed about all treatment options and given balanced, tailored information to support informed decision-making and empower their recovery. Equity of access to treatments including contralateral mastectomy for symmetry was also considered a research priority. CONCLUSION: This process has identified the top 10 research priorities to improve information and support for patients undergoing breast cancer surgery. Work is now needed to develop studies to address these important questions.

17.
BMC Palliat Care ; 23(1): 159, 2024 Jun 25.
Artículo en Inglés | MEDLINE | ID: mdl-38918771

RESUMEN

BACKGROUND: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. METHODS: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. RESULTS: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. CONCLUSIONS: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.


Asunto(s)
Cuidados Paliativos , Cuidado Terminal , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Estudios Transversales , Inglaterra , Masculino , Encuestas y Cuestionarios , Cuidado Terminal/métodos , Cuidado Terminal/normas , Cuidado Terminal/psicología , Femenino , Adulto , Persona de Mediana Edad , Personal de Salud/psicología , Investigadores/psicología , Investigación Cualitativa
18.
Health Res Policy Syst ; 22(1): 65, 2024 May 31.
Artículo en Inglés | MEDLINE | ID: mdl-38822374

RESUMEN

BACKGROUND: Research evidence has demonstrably improved health care practices and patient outcomes. However, systemic translation of evidence into practice is far from optimal. The reasons are complex, but often because research is not well aligned with health service priorities. The aim of this study was to explore the experiences and perspectives of senior health service executives on two issues: (1) the alignment between local research activity and the needs and priorities of their health services, and (2) the extent to which research is or can be integrated as part of usual health care practice. METHODS: In this qualitative study, semi-structured interviews were conducted with senior health leaders from four large health service organisations that are members of Sydney Health Partners (SHP), one of Australia's nationally accredited research translation centres committed to accelerating the translation of research findings into evidence-based health care. The interviews were conducted between November 2022 and January 2023, and were either audio-recorded and transcribed verbatim or recorded in the interviewer field notes. A thematic analysis of the interview data was conducted by two researchers, using the framework method to identify common themes. RESULTS: Seventeen health executives were interviewed, including chief executives, directors of medical services, nursing, allied health, research, and others in executive leadership roles. Responses to issue (1) included themes on re-balancing curiosity- and priority-driven research; providing more support for research activity within health organisations; and helping health professionals and researchers discuss researchable priorities. Responses to issue (2) included identification of elements considered essential for embedding research in health care; and the need to break down silos between research and health care, as well as within health organisations. CONCLUSIONS: Health service leaders value research but want more research that aligns with their needs and priorities. Discussions with researchers about those priorities may need some facilitation. Making research a more integrated part of health care will require strong and broad executive leadership, resources and infrastructure, and investing in capacity- and capability-building across health clinicians, managers and executive staff.


Asunto(s)
Investigación sobre Servicios de Salud , Liderazgo , Investigación Cualitativa , Investigación Biomédica Traslacional , Humanos , Australia , Práctica Clínica Basada en la Evidencia , Prioridades en Salud , Entrevistas como Asunto , Atención a la Salud/organización & administración , Servicios de Salud , Personal Administrativo
19.
Emerg Med Australas ; 2024 Jun 04.
Artículo en Inglés | MEDLINE | ID: mdl-38837582

RESUMEN

Attention and awareness regarding concussion injury in Australia have significantly increased in the last decade. Although most of this increase is because of discussion regarding concussions from sporting endeavours, the majority of concussions are from non-sport environments including motor vehicle crashes, workplace incidents, falls, accidents, assault and intimate partner violence. In all cases, hospital EDs are the first point of contact, yet as argued in our Opinion here, there are concerns regarding the consistency of care protocols, because of a number of reasons, as well as management and follow-up clinical practices. Our Opinion is to provide a constructive discussion as well as calling for ACEM to support research to provide evidence-based data. Finally, we provide some recommendations that could be implemented immediately to improve clinical practice for presentations of concussion injuries in EDs.

20.
Health Expect ; 27(3): e14096, 2024 06.
Artículo en Inglés | MEDLINE | ID: mdl-38895996

RESUMEN

INTRODUCTION: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. AIM: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. METHODS: Our analysis included 'Top 10' research priorities produced by UK-based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. RESULTS: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top-level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. CONCLUSION: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. PATIENT OR PUBLIC CONTRIBUTION: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings.


Asunto(s)
Prioridades en Salud , Humanos , Reino Unido , Investigación sobre Servicios de Salud , Toma de Decisiones Conjunta , Investigación
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