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1.
BMC Med Educ ; 24(1): 84, 2024 Jan 23.
Artigo em Inglês | MEDLINE | ID: mdl-38263114

RESUMO

BACKGROUND: Given the complementary roles of health professionals and journalists in communicating health risks to patients and the public, there have been calls for physicians to work with journalists to improve the quality of health information received by the public. Understanding the preferences of medical and journalism students for the way in which health risks are communicated and their understanding of words used to describe risk is an important first step to inform interdisciplinary learning. METHODS: Medical and journalism students (n = 203) completed an online survey where they were given qualitative descriptors of risk such as 'a chance', 'probably' and 'unlikely', and asked to assign a number that represents what the word means to them. Different formats of communicating risk (percentages, natural frequency and visual aids) were provided and students were asked to select and explain their preference. A thematic analysis of reasons was conducted. Numeracy and perceived mathematics ability were measured. RESULTS: Numbers assigned to the descriptor 'A chance' had the highest variability for medical students. Numbers assigned to the descriptor 'Probably' had the highest variability for journalism students. Using visual aids was the most popular format for risk communication for both courses (56% of medical students and 40% of journalism students). Using percentages was twice as popular with journalism students compared to medical students (36% vs. 18%). Perceived mathematics ability was lower in students with a preference for natural frequencies and in journalism students, however performance on an objective numeracy scale was similar for all three formats (percentages, natural frequency and visual aids). Reasons for choosing a preferred format included good communication, eliciting a response, or learning style. CONCLUSIONS: Education on health risk communication for medical and journalism students should emphasize the need for qualitative descriptors of risk to be combined with the best available number. Students are already considering their role as future communicators of health risks and open to tailoring the mode of presentation to their audience. Further research is required on the design and evaluation of interdisciplinary workshops in health risk communication for medical and journalism students to maximise the opportunities for future inter-professional working.


Assuntos
Estudantes de Medicina , Humanos , Comunicação , Escolaridade , Recursos Audiovisuais , Cognição
2.
BMC Prim Care ; 25(1): 22, 2024 01 10.
Artigo em Inglês | MEDLINE | ID: mdl-38200427

RESUMO

BACKGROUND: Analysis of general practice records can address the information gap on the epidemiology of type 2 diabetes (T2DM) in Ireland, informing practice and the development of interventions in primary care. The aim of this study was to identify patients with poor glycaemic control, risk factors for complications and evidence of end organ damage in a large multi-practice study and to profile their characteristics. METHODS: Patients with T2DM were identified using disease coding in Health One practice management software in 41 general practices. Patients' demographics and clinical data were extracted. Rates of poor glycaemic control (glycated haemoglobin > 58 mmol/mol) and albumin creatinine ratio > 3 mg/mmol were calculated. A multilevel logistic regression analysis using both patient and practice variables was conducted. RESULTS: Data was collected from 3188 patients of whom 29% (95% CI 28 to 31%) had poor glycaemic control, which was associated with younger age, higher BMI and higher total cholesterol. Only 42% of patients (n = 1332) had albumin creatinine ratio measured with 42% (95% CI 40 to 45%) of these having values > 3 mg/mmol. Older age groups, men, those with hypertension, eGFR < 60 ml/min/1.73m2 and poor glycaemic control were most associated with higher values of albumin creatinine ratio. CONCLUSIONS: Analysing this large multi-practice dataset gives important information on the prevalence and characteristics of diabetic patients who are most at risk of poor outcomes. It highlights that recording of some data could be improved.


Assuntos
Diabetes Mellitus Tipo 2 , Medicina Geral , Masculino , Humanos , Idoso , Diabetes Mellitus Tipo 2/complicações , Diabetes Mellitus Tipo 2/epidemiologia , Irlanda/epidemiologia , Creatinina , Controle Glicêmico , Estudos Retrospectivos , Proteinúria/epidemiologia , Albuminas
3.
Lancet Reg Health Eur ; 34: 100744, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37927430

RESUMO

Coverage of migrant and refugee data is incomplete and of insufficient quality in European health information systems. This is not because we lack the knowledge or technology. Rather, it is due to various political factors at local, national and European levels, which hinder the implementation of existing knowledge and guidelines. This reflects the low political priority given to the topic, and also complex governance challenges associated with migration and displacement. We review recent evidence, guidelines, and policies to propose four approaches that will advance science, policy, and practice. First, we call for strategies that ensure that data is collected, analyzed and disseminated systematically. Second, we propose methods to safeguard privacy while combining data from multiple sources. Third, we set out how to enable survey methods that take account of the groups' diversity. Fourth, we emphasize the need to engage migrants and refugees in decisions about their own health data. Based on these approaches, we propose a change management approach that narrows the gap between knowledge and action to create healthcare policies and practices that are truly inclusive of migrants and refugees. We thereby offer an agenda that will better serve public health needs, including those of migrants and refugees and advance equity in European health systems. Funding: No specific funding received.

4.
PLoS One ; 18(9): e0291066, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37656722

RESUMO

Information graphics or infographics combine visual representations of information or data with text. They have been used in health research to disseminate research findings, translate knowledge and address challenges in health communication to lay audiences. There is emerging evidence of the design of infographics with the involvement of patients and the public in health research. Approaches to involvement include public and patient involvement, patient engagement and participatory research approaches. To date, there has been no comprehensive review of the literature on the design of infographics with patients and the public in health research. This paper presents a protocol and methodological framework for a scoping review to identify and map the available evidence for the involvement of patients and the public in infographics design in health research. It has been informed by preliminary searches and discussions and will guide the conduct and reporting of this review.


Assuntos
Visualização de Dados , Comunicação em Saúde , Humanos , Pacientes , Conhecimento , Participação do Paciente , Literatura de Revisão como Assunto
5.
BMC Med Educ ; 23(1): 449, 2023 Jun 19.
Artigo em Inglês | MEDLINE | ID: mdl-37337239

RESUMO

BACKGROUND: Challenges in recruiting appropriately trained obstetricians and gynaecologists have been identified across the world. Given well documented staff shortages within obstetrics and gynaecology in Ireland, it is increasingly important to understand the factors which influence medical students to choose or reject a career in the speciality. The aim of this study was to ascertain the perceptions of final year graduate entry medical students of obstetrics and gynaecology, including the factors which may influence a student's decision to pursue in a career in the speciality. METHODS: Paper-based surveys of graduate entry medical students (n = 146) were conducted at the beginning and end of a six week rotation in obstetrics and gynaecology in Ireland. Responses to the surveys pre- and post-rotation were matched and changes in career choices, merits and demerits over time were analysed. All analysis was conducted using SPSS for Windows version 25. RESULTS: The responses of 72 students to both questionnaires could be matched (response rate of 49.3%). No male students expressed an interest in obstetrics, gynaecology or both as a first choice of career in the pre rotation survey. Obstetrics as a first choice of career increased from 6.9% pre rotation to 19.4% post rotation (p = 0.04) and this increase was seen in male and female students. Gynaecology as a first choice increased slightly from 1.4 to 4.2% (p = 0.50) and the dual speciality increased from 6.9 to 13.9% (p = 0.23). Students identified many merits of obstetrics pre-rotation with more than 60% identifying it as exciting, interesting fulfilling and challenging. However, incompatibility with family life was cited as a demerit by 72% of respondents and 68.1% identified fear of litigation as a demerit. Participants were less positive overall about the merits of a career in gynaecology with less than 40% viewing it as exciting, fulfilling, and varied. CONCLUSIONS: While respondents were positive about the merits of a career in obstetrics and gynecology, concerns remain about work-life balance, career opportunities, and the high-risk nature of the specialty. These concerns should be addressed by the profession and policy makers if they wish to attract sufficient numbers to address anticipated need in the coming years. Gender differences in speciality choice were also evident. If males are to be recruited into obstetrics and gynaecology, consideration should be given to the positive impact of internship.


Assuntos
Ginecologia , Obstetrícia , Estudantes de Medicina , Masculino , Feminino , Humanos , Ginecologia/educação , Obstetrícia/educação , Irlanda , Faculdades de Medicina , Escolha da Profissão , Inquéritos e Questionários
6.
Rural Remote Health ; 23(1): 8106, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36802742

RESUMO

BACKGROUND: As prevalence of multimorbidity and polypharmacy rise, healthcare systems must respond to these challenges. Data are needed from general practice on specific metrics of healthcare utilisation. This research aims to establish the rates of attendance to general practice and referral to hospital; and how age, multi-morbidity and polypharmacy affect them. METHODS: This was a retrospective study of general practices in a university-affiliated education and research network, consisting of 72 practices. Records from a random sample of 100 patients aged 50 years and over who attended each participating practice in the previous 2 years were analysed. Through manual record searching, data were collected on patient demographics, number of chronic illnessesand medications, numbers of attendances to the general practitioner (GP), practice nurse, home visits and referrals to a hospital doctor. Attendance and referral rates were expressed per person-years for each demographic variable and the ratio of attendance to referral rate was also calculated. RESULTS: Of the 72 practices invited to participate, 68 (94%) accepted, providing complete data on a total of 6603 patients' records and 89,667 consultations with the GP or practice nurse; 50.1% of patients had been referred to hospital in the previous 2 years. The attendance rate to general practice was 4.94 per person per year and the referral rate to the hospital was 0.6 per person per year, giving a ratio of over eight attendances for every referral. Increasing age, number of chronic illnesses and number of medications were associted with increased attendance rates to the GP and practice nurse and home visits but did not significantly increase the ratio of attendance to referral rate. DISCUSSION: As age, morbidity and number of medications rise, so too do all types of consultations in general practice. However, the rate of referral remains relatively stable. General practice must be supported to provide person-centred care to an ageing population with rising rates of multi-morbidity and polypharmacy.


Assuntos
Medicina Geral , Clínicos Gerais , Humanos , Pessoa de Meia-Idade , Idoso , Multimorbidade , Estudos Retrospectivos , Polimedicação , Encaminhamento e Consulta , Hospitais , Prevalência
7.
PLoS One ; 18(2): e0281749, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36780538

RESUMO

Data literacy has been defined as "the ability to read, work with, analyze and argue with data". The United Nations has highlighted a growing risk of inequality for people excluded from the new world of data by lack of education, language, poverty, and discrimination and has called for the development of data literacy at all levels of society. Responses to data are shaped by personal, social and cultural influences, as well as by trust in the source. The arts can play an important role in regulating our responses to information and increasing accessibility, engagement and sense-making of data. However, to our knowledge, to date, there has been no comprehensive review of publications on the role of the arts in the context of data literacy. This paper presents a protocol and a methodological framework to perform a scoping review to identify and map the available evidence for the role of the arts in enhancing data literacy. The review aims to provide an overview of research over the past twenty years to develop a clearer understanding of (a) which art forms are represented in the literature (b) which population groups and settings are identified (c) and the rationale for using the arts to enhance data literacy.


Assuntos
Idioma , Alfabetização , Humanos , Literatura de Revisão como Assunto
8.
Trop Med Int Health ; 28(2): 90-97, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36576432

RESUMO

Migration is a longstanding, growing global phenomenon. As a social determinant of health, migration can lead to health inequities between people on the move and host populations. Thus, it is imperative that there is a coordinated effort to advance migration- and health-related goals. WHO has a specific remit to support evidence-based decision-making in its Member States. As part of that remit, WHO Europe presents this Framework for Refugee and Migrant Health Research in the WHO European Region. It is designed as a starting point for debating and analysing a broad range of options and approaches to help inform a WHO global research agenda on health and migration. This is important because refugee and migrant health research is a complex interdisciplinary field that is expanding in a fast-changing socio-political environment. The Framework is intended for all stakeholders involved: academic, civil society organisations, refugees, migrants, policy-makers, healthcare providers, educators and funders. It is developed by academics in consultation with these stakeholder groups. It reflects on three specific interrelated dynamics in research practice. These are (i) research prioritisation; (ii) study samples and (iii) research design. The Framework offers recommendations to consider for each one of these. It elucidates the value of involving refugees and migrants in research and research agendas and the need to develop an ecosystem that will support and sustain participatory, interdisciplinary, transdisciplinary and inter-sectoral projects.


Assuntos
Refugiados , Migrantes , Humanos , Ecossistema , Europa (Continente) , Organização Mundial da Saúde
9.
Front Public Health ; 10: 1038409, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36438293

RESUMO

What can we learn from the history of Public and Patient Involvement (PPI) in healthcare and research across global jurisdictions? Depending on region and context, the terminology and heritage of involvement in research vary. In this paper, we draw on global traditions to explore dominant themes and key considerations and critiques pertaining to PPI in order to inform a PPI culture shift in Ireland. We then describe the heritage of PPI in Ireland and present the case for combining methodological imperatives with policy drivers to support and encourage meaningful involvement. Specifically, we propose that PPI can be enriched by the theory and processes of participatory health research (PHR); and that implementation requires concurrent capacity building. We conclude with a call for Irish researchers (authors of this paper included) to consider the conceptual complexities and nuances of a participatory approach to build on the policy imperatives driving PPI and to contribute to the international evidence base and research culture. Specifically, we call for Irish health researchers and funders to consider and reflect on: (1) the rich literature of PHR as a resource for enacting meaningful PPI; (2) the roots and origins of varying participatory health research methods; (3) how community/patient groups can lead health research; and (4) co-learning and partnership synergy to create space for both academic and community expertise; and (5) the importance of using standardized reporting tools.


Assuntos
Participação do Paciente , Políticas , Humanos , Irlanda , Pesquisadores
10.
Int J Equity Health ; 21(1): 35, 2022 03 15.
Artigo em Inglês | MEDLINE | ID: mdl-35292025

RESUMO

BACKGROUND: Social exclusion is a complex concept that is recognised as a key determinant of health. Many measurement tools developed looked at people from single excluded groups in isolation. We know from experience and literature that exclusion is often intersectional and multi-layered. Therefore, the aim of this research was to develop a social exclusion measurement tool for use in healthcare settings with individuals from any excluded group that would include questions to investigate socioeconomic elements and subjective experiences in their lives. METHODS: Inductive and deductive methods were used to develop the tool. Early drafts were tested with experts (both academic and experts by experience) and modified in line with feedback received. The tool was then piloted with people in the community, and this allowed us to assess the internal consistency and validity of the tool. Exploratory factor analysis was carried out as part of this evaluation. RESULTS: The measurement tool was initially evaluated by 17 academic and 'real world' experts. It was then piloted with seven experts by experience, two gatekeepers and two participants who were presumed not to be excluded, resulting in the development of the final tool. This was then tested with 276 participants (127 presumed excluded, 149 presumed not excluded). The socioeconomic characteristics of these participants were documented, and exploratory factor analysis was carried out on data relating to subjective items. A four-factor structure emerged comprising 22 items. Internal consistency of the factors was high, and their ability to discriminate between the two groups was notable. CONCLUSIONS: A tool for measuring the social exclusion of individuals has been developed by engaging with people from a variety of excluded groups. Socioeconomic indicators were combined with subjective items. The input of experts by experience, academics and others was sought to enhance the tool. The tool was applied to two distinct samples, showing obvious differences both in the socioeconomic items, and the items included in the factor analysis. The potential use of this tool could have positive implications for people who are excluded.


Assuntos
Atenção à Saúde , Isolamento Social , Análise Fatorial , Humanos
11.
PLoS One ; 17(2): e0263258, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35113926

RESUMO

BACKGROUND: As prevalence of multimorbidity and polypharmacy rise, health care systems must respond to these challenges. Data is needed from general practice regarding the impact of age, number of chronic illnesses and medications on specific metrics of healthcare utilisation. METHODS: This was a retrospective study of general practices in a university-affiliated education and research network, consisting of 72 practices. Records from a random sample of 100 patients aged 50 years and over who attended each participating practice in the previous two years were analysed. Through manual record searching, data were collected on patient demographics, number of chronic illnesses and medications, numbers of attendances to the general practitioner (GP), practice nurse, home visits and referrals to a hospital doctor. Attendance and referral rates were expressed per person-years for each demographic variable and the ratio of attendance to referral rate was also calculated. RESULTS: Of the 72 practices invited to participate, 68 (94%) accepted, providing complete data on a total of 6603 patients' records and 89,667 consultations with the GP or practice nurse; 50.1% of patients had been referred to hospital in the previous two years. The attendance rate to general practice was 4.94 per person per year and the referral rate to the hospital was 0.6 per person per year, giving a ratio of over eight attendances for every referral. Increasing age, number of chronic illnesses and number of medications were associated with increased attendance rates to the GP and practice nurse and home visits but did not significantly increase the ratio of attendance to referral rate. DISCUSSION: As age, morbidity and number of medications rise, so too do all types of consultations in general practice. However, the rate of referral remains relatively stable. General practice must be supported to provide person centred care to an ageing population with rising rates of multi-morbidity and polypharmacy.


Assuntos
Medicina Geral/organização & administração , Multimorbidade , Polimedicação , Encaminhamento e Consulta/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Doença Crônica , Atenção à Saúde , Medicina de Família e Comunidade , Feminino , Clínicos Gerais , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Atenção Primária à Saúde/organização & administração , Estudos Retrospectivos
12.
BMC Public Health ; 22(1): 166, 2022 01 24.
Artigo em Inglês | MEDLINE | ID: mdl-35073892

RESUMO

BACKGROUND: The relationship between economic conditions and health can depend on both the health outcome measured and the composition of the population. Analysis of outcomes by both ethnicity and country of birth has been recommended. The aim of our study is to explore the impact of recession on self-rated health and depression of migrant fathers in Ireland over time, considering both ethnicity and country of birth. METHODS: Longitudinal data from waves of a population-representative cohort study (Growing up in Ireland, 2008-2013) was used with Wave 1 collected before the recession and Wave 2 collecting information on how the recession affected families. Socio-demographic variables, self-rated health and depression were compared across three groups of fathers classified by self-identified ethnicity and country of birth: White Irish (n = 5628), Other White European (EU-10) (n = 431), and Black African (n = 192) using chi-square tests and logistic regression models. Rates of follow-up were compared across groups at Wave 3. RESULTS: Prior to the recession, the rate of employment was lowest for African fathers (51% vs 81% for EU-10 fathers and 92% for Irish fathers, p < 0.001). At Wave 2, African families were more likely to have experienced a very significant effect of the recession (40.1% compared to 22.4% for families from EU-10 and 21.3% for Irish families, p < 0.001). However, the impact of the recession on depression and self-rated health was only found in Irish fathers. By Wave 3, rates of follow-up were lower for migrant fathers, particularly for EU-10 fathers. CONCLUSIONS: Understanding the relationship between economic conditions and health is complex and may be related to multiple dimensions of socio-economic advantage and disadvantage. African families were already more likely to be disadvantaged prior to the recession and that pattern persisted during the recession. Further research on attrition rates of migrants in population cohort studies is needed and the development of effective strategies for recruitment, follow-up and analysis.


Assuntos
Migrantes , Estudos de Coortes , Recessão Econômica , Pai , Humanos , Irlanda/epidemiologia , Estudos Longitudinais , Masculino
13.
Eur J Public Health ; 32(1): 59-65, 2022 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-34849725

RESUMO

BACKGROUND: Care is regularly provided on an informal basis by family and friends and it is well established that caregivers experience high rates of depression. The majority of research on caregivers tends to focus on older, full-time caregivers, with less attention paid to working caregivers (in paid employment). The aim of this study is to explore the impact of work status on depression in caregivers. METHODS: A sample of individuals from the 2014 European Social Survey dataset, aged 18 and older, who reported being a caregiver, were investigated (n = 11 177). Differences in sociodemographic, mental and physical health and social network variables, between working and non-working caregivers, were investigated. Hierarchical logistic regression models were used to investigate associations between the caregivers' work status and depression. This study was developed in partnership with a panel of caregivers who contributed to the conceptualization and interpretation of the statistical analysis. RESULTS: Findings showed that 51% of caregivers reported being in paid employment. Non-working caregivers were more likely to be female, older, widowed, have lower education levels and provide intensive caring hours. They were also more likely to report depressive symptoms than working caregivers after controlling for sociodemographic, social networks and intensity of caring (adjusted odds ratio = 1.77, 95% confidence interval = 1.54-2.03). The panel considered policies to support continued work important as a means of maintaining positive mental health for caregivers. CONCLUSIONS: Supportive policies, such as flexible working and care leave, are recommended to allow caregivers to continue in paid work and better manage their health, caring and working responsibilities.


Assuntos
Cuidadores , Depressão , Adolescente , Cuidadores/psicologia , Depressão/epidemiologia , Emprego , Feminino , Amigos , Humanos , Masculino , Saúde Mental
14.
BMJ Support Palliat Care ; 12(e1): e94-e102, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-32917655

RESUMO

OBJECTIVE: This study compares the characteristics and place of death of patients with cancer receiving specialist palliative care in acute hospitals with those who do not. METHODS: All patients with incident invasive cancer in Ireland (1994-2016 inclusive), excluding non-melanoma skin cancer, who attended a cancer centre and died in 2016 were identified from cancer registry data. Patients were categorised based on a diagnosis code 'Encounter for palliative care' from linked hospital episode data. Place of death was categorised from death certificate data. Data were analysed using descriptive statistics, χ2 tests and logistic regression. RESULTS: Of n=4103 decedents identified, 62% had a hospital-based palliative care encounter in the year preceding death. Age (p<0.001), marital status (p=0.017), deprivation index (p<0.001) and health board region (p=0.008) were independent predictors of having a palliative care encounter. Place of death differed by palliative care encounter group: 45% of those with an encounter died in hospital versus 50% without an encounter, 33% vs 16% died in a hospice and 18% vs 28% died at home (p<0.001). CONCLUSION: Almost two-thirds of patients with cancer who attended a cancer centre and died in 2016 had a palliative care encounter. They were younger, less likely to be married and more likely to be from deprived areas. Having accounted for sociodemographic factors, there was evidence of regional variation in receiving care. Demographic and clinical factors and the provision of health services in a region need to be considered together when assessing end-of-life care.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias , Assistência Terminal , Humanos , Neoplasias/terapia , Cuidados Paliativos , Estudos Retrospectivos
15.
Eur J Health Law ; : 1-18, 2021 Oct 28.
Artigo em Inglês | MEDLINE | ID: mdl-34715645

RESUMO

Defensive medicine describes behaviours engaged in by physicians, for the purposes of averting the threat of medical negligence litigation and/or complaints. Defensive practice typically encompasses 'assurance' or 'avoidance' behaviours, or 'positive' or 'negative' defensive medicine. Assurance behaviours include, for example, meticulous notetaking and ordering further clinically unnecessary tests, whereas avoidance behaviours encompass actions such as refusing to engage with a patient perceived to be high-risk. Whilst such practices may be understandable, defensive medicine is problematic for a number of reasons: it may result in a lower standard of patient care, where for example, a patient is exposed to unnecessary risk(s); and it can increase healthcare costs, which in turn limits resources. Drawing on the findings of a survey of surgeons in Ireland, this study investigates the existence of defensive practices, and explores the impact of the civil and regulatory responses to patient safety incidents on surgical practice. Given the increasing emphasis on patient safety and cultivating a "no-blame" culture both nationally and internationally, the findings of this research illustrate the tension between the current medico-legal and regulatory environment and medical practice, with implications for quality and safety.

16.
HRB Open Res ; 4: 17, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33842831

RESUMO

Background: This study aims to examine the potential of currently available administrative health and social care data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) evaluate the impact of recent health system reforms and changes to data protection laws. Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability, and mechanisms for data access. Results: Nine datasets with potential for PEoLC research were identified, including death certificate data, hospital episode data, pharmacy claims data,  one national survey, four disease registries (cancer, cystic fibrosis, motor neurone and interstitial lung disease) and a national renal transplant registry.  The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the Eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data use. Conclusions: Ongoing reform initiatives and recent changes to data privacy laws combined with detailed knowledge of the datasets, appropriate permissions, and good study design will facilitate future use of administrative health and social care data for PEoLC research in Ireland.

17.
PLoS One ; 16(5): e0251192, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33979383

RESUMO

CONTEXT: The use of ethnic identifiers in health systems is recommended in several European countries as a means to identify and address heath inequities. There are barriers to implementation that have not been researched. OBJECTIVE: This study examines whether and how ethnicity data can be collected in Irish general practices in a meaningful and acceptable way. METHODS: Qualitative case study data generation was informed by Normalization Process Theory (NPT) constructs about 'sense' making and 'engagement'. It consisted of individual interviews and focus group discussions based on visual participatory techniques. There were 70 informants, including 62 general practitioner (GP) users of diverse ethnic backgrounds recruited through community organisations and eight GPs identified through an inter-agency steering group. Data were analysed according to principles of thematic analysis using NPT. RESULTS: The link between ethnicity and health was often considered relevant because GP users grasped connections with genetic (skin colour, lactose intolerance), geographic (prevalence of disease, early years exposure), behavioural (culture/food) and social determinant (housing) factors. The link was less clear with religion. There was some scepticism and questions about how the collection of data would benefit GP consultations and concerns regarding confidentiality and the actual uses of these data (e.g. risk of discrimination, social control). For GPs, the main theme discussed was relevance: what added value would it bring to their consultations and was it was their role to collect these data? Their biggest concern was about data protection issues in light of the European Union (EU) General Data Protection Regulation (GDPR). The difficulty in explaining a complex concept such as 'ethnicity' in the limited time available in consultations was also worrying. CONCLUSIONS: Implementation of an ethnicity identifier in Irish general practices will require a strong rationale that makes sense to GP users, and specific measures to ensure that its benefits outweigh any potential harm. This is in line with both our participants' views and the EU GDPR.


Assuntos
Coleta de Dados/tendências , Etnicidade/estatística & dados numéricos , Atitude do Pessoal de Saúde/etnologia , Competência Clínica , Coleta de Dados/ética , Coleta de Dados/métodos , Etnicidade/classificação , Medicina de Família e Comunidade/ética , Grupos Focais/métodos , Medicina Geral/ética , Clínicos Gerais/educação , Clínicos Gerais/psicologia , Humanos , Irlanda , Percepção/ética , Pesquisa Qualitativa , Encaminhamento e Consulta
18.
Adv Skin Wound Care ; 34(6): 1-5, 2021 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-33660660

RESUMO

OBJECTIVE: To determine the performance and user experience of a novel ostomy barrier ring over a 4-week period. METHODS: This single-arm investigation conducted across three clinical sites included 25 adult participants with an ileostomy for 3 months or longer. The participants used their standard ostomy pouching appliance along with a novel barrier ring for a period of 4 weeks. Skin condition was assessed using the Ostomy Skin Tool. Change in skin condition over the study period was recorded for each participant. The participants' experience in using the novel barrier ring was measured using a five-point Likert-type scale. RESULTS: Twenty of the 25 participants (80%) completed the trial. Of those participants, the median Ostomy Skin Tool score at both the beginning (range, 0-8) and end was 0 (range, 0-6). In terms of skin condition, 7 participants experienced an improvement in skin condition, 11 experienced no change, and 2 got worse. A median score of 5 out of 5 was recorded for all questions relating to user experience. CONCLUSIONS: Although not statistically significant, there was a clear trend toward improvements in peristomal skin condition using the novel barrier ring, even for participants who were already using a barrier ring. User feedback was positive with respect to comfort, device handling, and the perception of the device's ability to protect the skin. Further, most participants who already used a barrier ring indicated that the novel barrier ring would result in a longer wear time.


Assuntos
Acessibilidade Arquitetônica/normas , Ileostomia/instrumentação , Adulto , Idoso , Acessibilidade Arquitetônica/instrumentação , Acessibilidade Arquitetônica/estatística & dados numéricos , Procedimentos Cirúrgicos do Sistema Digestório/instrumentação , Procedimentos Cirúrgicos do Sistema Digestório/métodos , Feminino , Humanos , Ileostomia/normas , Ileostomia/estatística & dados numéricos , Irlanda , Masculino , Pessoa de Meia-Idade , Higiene da Pele/métodos
19.
Prev Med Rep ; 24: 101641, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34976692

RESUMO

Most adults do not meet physical activity guidelines with negative implications for health. The aim of this study was to profile adults using multiple physical activity behaviours and to investigate associations with chronic conditions, multi-morbidity and healthcare utilisation. The study used data generated from a sample of adults aged 45 years and older (N = 485), recruited to the Move for Life randomised control trial. Participants wore an accelerometer for eight consecutive days. Hierarchical cluster analysis was conducted using the variables: moderate to vigorous intensity physical activity, light intensity physical activity, step count, waking sedentary time, standing time and bed hours. Descriptive statistics were used to investigate associations with self-reported number of chronic illnesses, multi-morbidity and healthcare utilisation. Four distinct physical activity behaviour profiles were identified: inactive-sedentary (n = 50, 10.3%), low activity (n = 295, 60.8%), active (n = 111, 22.9%) and very active (n = 29, 6%). The inactive-sedentary cluster had the highest prevalence of chronic illnesses, in particular, mental illness (p = 0.006) and chronic lung disease (p = 0.032), as well as multi-morbidity, complex multi-morbidity and healthcare utilisation. The prevalence of any practice nurse visit (p = 0.033), outpatient attendances (p = 0.04) and hospital admission (p = 0.034) were higher in less active clusters. The results have provided an insight into how physical activity behaviour is associated with chronic illness and healthcare utilisation. A group within the group has been identified that is more likely to be unwell. Provisions need to be made to reduce barriers for participation in physical activity for adults with complex multi-morbidity and very low physical activity.

20.
Clin Rehabil ; 35(5): 765-774, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33322921

RESUMO

OBJECTIVE: To identify risk factors for falling for people with Multiple Sclerosis. DESIGN: Prospective cohort study. SETTING: Neurology service in a tertiary hospital. SUBJECTS: Participants were 101 people with Multiple Sclerosis and Expanded Disability Status Score of 3-6.5. One participant withdrew after the baseline assessment; data were analysed for 100 participants. INTERVENTIONS: No intervention. MAIN MEASURES: Outcome was rate of falls, and predictors were Timed Up and Go, Symbol Digit Modalities test, demographics and 15 self-report questions about various symptoms including fatigue, concentration, dual tasking, bladder and bowel control. Three-month prospective diaries recorded falls. RESULTS: There were 791 falls reported over the 3-month period from a total of 56 fallers. Falls rate per person-year was 32.08 falls. Following multivariable regression analysis, the model with the greatest levels of clinical utility and discriminative ability (sensitivity 88% and area under the receiving operating curve statistic = 0.72, 95% CI 0.62-0.82), included the variables of history of a fall, not having visual problems, problems with bladder control and a slower speed on the Timed Up and Go. CONCLUSION: This study confirms the high incidence of falls for people with Multiple Sclerosis and provides a risk prediction model including fall history, problems with bladder control, not having visual problems and a slower Timed Up and Go speed that may be used to identify those at greater risk and in need of tailored falls prevention intervention.


Assuntos
Acidentes por Quedas/estatística & dados numéricos , Esclerose Múltipla/complicações , Esclerose Múltipla/fisiopatologia , Acidentes por Quedas/prevenção & controle , Adulto , Idoso , Fadiga/complicações , Feminino , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/psicologia , Testes Neuropsicológicos , Equilíbrio Postural , Estudos Prospectivos , Fatores de Risco
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