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Background: People living in rural and remote communities commonly experience significant health disadvantages. Geographical barriers and reduced specialist and generalist services impact access to care when compared with metropolitan context. Innovative models of care have been developed for people living with chronic diseases in rural areas with the goal of overcoming these inequities. The aim of this paper was to describe the characteristics and outcomes of studies investigating innovative models of care for people living with chronic disease in rural areas of developed countries where a metropolitan comparator was included.Methods: An integrative systematic review was undertaken. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) method was used to understand the empirical and theoretical data on clinical outcomes for people living with chronic disease in rural compared with metropolitan contexts and their models of care in Australia, New Zealand, United States, Canada and the United Kingdom.Results: Literature searching revealed 620 articles published in English between 1st January 2000 and 31st March 2019. One hundred sixty were included in the review including 68 from the United States, 59 from Australia and New Zealand (5), 21 from Canada and 11 from the United Kingdom and Ireland. 53% (84) focused on cardiovascular disease; 27% (43) diabetes mellitus; 8% (12) chronic obstructive pulmonary disease; and 13% (27) chronic kidney disease. Mortality was only reported in 10% (16) of studies and only 18% (29) reported data on Indigenous populations.Conclusions: This integrated review reveals that the published literature on common chronic health issues pertaining to rural and remote populations is largely descriptive. Only a small number of publications focus on mortality and comparative health outcomes from health care models in both urban and non-urban populations. Innovative service models and telehealth are together well represented in the published literature but data on health outcomes is relatively sparse. There is significant scope for further directly comparative studies detailing the effect of service delivery models on the health outcomes of urban and rural populations. We believe that such data would further knowledge in this field and help to break the deadly synergy between increased rurality and poorer outcomes for people with chronic disease. [ABSTRACT FROM AUTHOR]

Background: Despite efforts to improve the accuracy and transparency of the design, conduct, and reporting of randomised controlled trials (RCTs), deficiencies remain. Such deficiencies contribute to significant, avoidable waste of health research investment and impede reproducibility. This study aimed to synthesise and critically analyse changes over time in the conduct and reporting of internationally published evidence on patient and/or population health-oriented RCTs conducted in one country.Methods: This observational study drew on systematic review methods. We searched six databases for published RCTs (database inception to December 2018) where ≥ 80% of participants were recruited in the Republic of Ireland. RCTs of interventions targeted at patients, providers and/or policy makers intended to improve health, healthcare or health research were included. For each study, screening, data extraction and methodological quality appraisal were conducted by one member of the author team.Results: From 17,560 titles and abstracts, 752 unique RCTs were published in 745 papers between 1968 and 2018, with a steady year-on-year increase since 1968. The number of participants was in the range of 2-8628. The majority were parallel design (86%) and classified as treatment evaluation. Of the 418 RCTs published since the introduction of mandatory clinical trial registration by the International Committee of Medical Journal Editors in 2005, 32% (n = 134) provided a trial registration number. This increased to 47% when taking studies published between 2013 and 2018 (n = 232). Since the 1996 publication of the CONSORT statement, 16% of included RCTs made specific reference to a standardised reporting guideline and this increased to 31% for more recent studies published between 2013 and 2018. Overall, 7% (n = 53) of studies referred to a published study protocol, increasing to 20% for studies published between 2013 and 2018.Conclusion: Evidence from this single-country study of RCTs published in the international literature suggests that both the number overall, the number registered and the number referencing reporting guidelines have increased steadily over time. Despite widespread endorsement of reporting standards, reporting of RCTs remains suboptimal in domains such as compliance with the CONSORT statement and prospective trial registration. Researchers, funders and journal editors, nationally and internationally, should continue to focus on improving reporting and examining avoidable waste of health research investment. [ABSTRACT FROM AUTHOR]

Background: Globally the state of palliative care research remains uncertain. Questions remain regarding impact, funding, and research priorities. Building upon previous research, this review examines palliative care research in Ireland and contributes to a wider international debate on the state of palliative care research. Methods: A systematic mapping review was undertaken. Eight bibliographic databases and thesis repositories were searched from May 2012 to April 2017. Palliative care related search terms were combined with "Ireland" or "Irish" to increase search sensitivity. Inclusion criteria were applied by two independent reviewers. Descriptive analysis was completed using IBM SPSS v23. Thematic analysis was undertaken using a data-driven approach to develop new themes. Results: In total, 808 studies were screened and 151 papers from 117 studies were included for review. The top two areas of research focus included: (1) specific groups, services, and settings (n = 70); and (2) identification, communication and education (n = 37). A diverse variety of research methods were used including mixed methods (25%), surveys (22%), interviews (20%), and reviews (17%). One randomised control trial was conducted. The predominance of research papers focused solely on health care professionals (n = 35%), and the community setting was the most frequent location for data collection (41%). The majority of data was collected across the two jurisdictions of the Republic of Ireland (ROI) and Northern Ireland (NI) (37%), and 23% of studies included data outside of Ireland and the UK. The most frequent sources of funding were: consortiums (n = 40); government (n = 24); and philanthropic bodies (n = 20). Forty percent (n = 60) of papers were either unfunded or did not acknowledge a funder. Conclusions: There is a continued increase in palliative care research in Ireland with increased collaborative working nationally and internationally. The quantity and impact of research has increased from the previous review, which can be attributed to significant investment in research funding and collaborative networks. However, research gaps continue to exist including out of hours' care, physical and psychological symptom control, intervention studies, and the patient and family perspective. Areas for attention include the need to ensure knowledge exchange and demonstrate impact of the research on patient and family carer outcomes. [ABSTRACT FROM AUTHOR]

Background: Oral health impacts systemic health, individual well-being, and quality of life. It is important to identify conditions that may exacerbate oral disease to aid public health and policy development and promote targeted patient treatment strategies. Developmental defects can increase an individual's risk of dental caries, hypersensitivity, premature tooth wear, erosion, and poor aesthetics. As part of an ongoing study assessing oral health in adults with cystic fibrosis at Cork University Dental School and Hospital, a systematic review of available literature was conducted to assess the prevalence of enamel defects in people with cystic fibrosis. Aims: To critically evaluate the literature to determine if the prevalence of developmental defects of enamel is higher in people with cystic fibrosis (PwCF). Methods: Data Sources: Three online databases were searched Embase, Scopus, and Web of Science Core Collection. Studies that examined an association between cystic fibrosis and developmental defects of enamel were included in this systematic review. Results: The initial search identified 116 publications from the following databases Embase, Web of Science Core Collection, and Scopus. Eleven studies were included for qualitative analysis. Nine studies concluded that PwCF had a higher prevalence of enamel defects than control people and one study found no difference in cystic fibrosis (CF) status. All studies had a risk of bias that may influence study results and their interpretation. Conclusions: The results of the systematic review show a consistent pattern that PwCF have a higher prevalence of DDE than people without CF. Genetic dysfunction, chronic systemic infections, and long-term antibiotic use are possible aetiological causes. This review highlights the need for future studies to investigate if DDEs are caused by the underlying CFTR mutation or as a consequence of disease manifestations and/or management. [ABSTRACT FROM AUTHOR]

Background: Implementing effective antenatal care models is a key global policy goal. However, the mechanisms of action of these multi-faceted models that would allow widespread implementation are seldom examined and poorly understood. In existing care model analyses there is little distinction between what is done, how it is done, and who does it. A new evidence-informed quality maternal and newborn care (QMNC) framework identifies key characteristics of quality care. This offers the opportunity to identify systematically the characteristics of care delivery that may be generalizable across contexts, thereby enhancing implementation. Our objective was to map the characteristics of antenatal care models tested in Randomised Controlled Trials (RCTs) to a new evidence-based framework for quality maternal and newborn care; thus facilitating the identification of characteristics of effective care.Methods: A systematic review of RCTs of midwifery-led antenatal care models. Mapping and evaluation of these models' characteristics to the QMNC framework using data extraction and scoring forms derived from the five framework components. Paired team members independently extracted data and conducted quality assessment using the QMNC framework and standard RCT criteria.Results: From 13,050 citations initially retrieved we identified 17 RCTs of midwifery-led antenatal care models from Australia (7), the UK (4), China (2), and Sweden, Ireland, Mexico and Canada (1 each). QMNC framework scores ranged from 9 to 25 (possible range 0-32), with most models reporting fewer than half the characteristics associated with quality maternity care. Description of care model characteristics was lacking in many studies, but was better reported for the intervention arms. Organisation of care was the best-described component. Underlying values and philosophy of care were poorly reported.Conclusions: The QMNC framework facilitates assessment of the characteristics of antenatal care models. It is vital to understand all the characteristics of multi-faceted interventions such as care models; not only what is done but why it is done, by whom, and how this differed from the standard care package. By applying the QMNC framework we have established a foundation for future reports of intervention studies so that the characteristics of individual models can be evaluated, and the impact of any differences appraised. [ABSTRACT FROM AUTHOR]

Background: Assisted human reproduction (AHR) treatment is not regulated in Ireland although it has been practiced since 1987. Thus, Ireland is one of the only European countries without any form of AHR specific regulation. This literature review research aimed to provide a comprehensive and comparative overview of AHR regulation and any associated literature to compare Ireland and other developed countries. Methods: Systematic searches were conducted in several databases (Google Scholar, Web of Science, MEDLINE, SCOPUS and official government websites) utilising search strings in relation to AHR legislation for each country under review. A final review of 155 research articles were eligible after screening related to legislation in each country for inclusion. The findings were synthesised and summarised by legislation in each country. Results: Different countries offer different levels of ART and IVF provision and services in terms of the type of services allowed, financial support, age, sex and eligibility of recipients. The UK's oversight legislation combined with the Netherlands financial legislation section provides as being most effective hybrid model of best practice for adoption in Ireland. Conclusions: This research concluded that there is no AHR legislation in any country that can be described as all-encompassing in terms of the services allowed, financial support and age of recipients. It was concluded that significant changes need to be made to the Irish draft legislation which is in limbo with the government for the last 3 years in order to meet Irish patient needs. Plain language summary: Ireland is one of the only European countries without any form of assisted human reproduction specific regulation. This research aimed to review of assisted human reproduction regulations to compare Ireland with other developed countries. There is no assisted reproduction legislation in any country that can be described as perfect. The UK's legislation combined with the Netherlands financial legislation section is concluded as being most effective hybrid model of best practice for adoption in Ireland. It was concluded that significant changes need to be made to the Irish draft legislation which is in limbo with the government for the last 3 years. [ABSTRACT FROM AUTHOR]

Background: A woman and girl centred, rights-based approach to health care is critical to achieving sexual and reproductive health. However, women with female genital mutilation in high-income countries have been found to receive sub-optimal care. This study examined documents guiding clinicians in health and community service settings in English-speaking high-income countries to identify approaches to ensure quality women and girl-centred care for those with or at risk of female genital mutilation. Method: We undertook a scoping review using the integrative model of patient-centredness to identify principles, enablers, and activities to facilitate woman and girl-centred care interactions. We developed an inclusion criterion to identify documents such as guidance statements and tools and technical guidelines, procedural documents and clinical practice guidelines. We searched the databases and websites of health professional associations, ministries of health, hospitals, national, state and local government and non-government organisations working in female genital mutilation in the United Kingdom, Ireland, Canada, The United States, New Zealand, and Australia. The Appraisal of Guidelines for Research and Evaluation tool was used to appraise screened documents. Findings: One-hundred and twenty-four documents were included in this scoping review; 88 were developed in the United Kingdom, 20 in Australia, nine in the United States, three in Canada, two in New Zealand and two in Ireland. The focus of documents from the United Kingdom on multi-professional safeguarding (62), while those retrieved from Australia, Canada, Ireland, New Zealand and the US focused on clinical practice. Twelve percent of the included documents contained references to all principles of patient-centred care, and only one document spoke to all principles, enablers and activities. Conclusion: This study demonstrates the need to improve the female genital mutilation-related guidance provided to professionals to care for and protect women and girls. Professionals need to involve women and girls with or at risk of female genital mutilation in the co-design of guidelines and tools and evaluation of them and the co-production of health care. Plain Language Summary: High-quality health care for women and girls should be provided by health workers who are respectful and caring. Health workers should also work with others as a team and help women and girls make their own decisions about their health care. This approach is called patient-centred care. Female genital mutilation (FGM) is a cultural practice associated with poor health outcomes. Women who have experienced FGM have not always received quality health care. We studied the guidance and tools to help health workers provide care to women and girls with or at risk of FGM. This study aimed to understand how health workers are supported to provide woman and girl-centred health care in these documents. We searched for these documents on the websites of health professional associations, government health departments and organisations working in FGM in the United Kingdom, Ireland, Canada, The United States, New Zealand, and Australia. The documents were analysed using a tool that described all the important areas needed to provide patient-centred health care. Of the 124 documents, we found that only 12% contained information about all aspects of patient-centred care. Only one document had details about all the areas that are part of patient-centred care. This study shows that we need to improve the FGM-related guidance provided to health workers to care for and protect women and girls. There is a need for health workers to involve women and girls with or at risk of FGM in designing guidelines and tools and evaluating them to these documents best fit their needs. [ABSTRACT FROM AUTHOR]

Background/objective: Recessive dystrophic epidermolysis bullosa (RDEB) is a genetic collagen disorder characterized by skin fragility leading to blistering, wounds, and scarring. There are currently no approved curative therapies. The objective of this manuscript is to provide a comprehensive literature review of the disease burden caused by RDEB.Methods: A systematic literature review was conducted in MEDLINE and Embase in accordance with PRISMA guidelines. Observational and interventional studies on the economic, clinical, or humanistic burden of RDEB were included.Results: Sixty-five studies were included in the review. Patients had considerable wound burden, with 60% reporting wounds covering more than 30% of their body. Increases in pain and itch were seen with larger wound size. Chronic wounds were larger and more painful than recurrent wounds. Commonly reported symptoms and complications included lesions and blistering, anemia, nail dystrophy and loss, milia, infections, musculoskeletal contractures, strictures or stenoses, constipation, malnutrition/nutritional problems, pseudosyndactyly, ocular manifestations, and dental caries. Many patients underwent esophageal dilation (29-74%; median dilations, 2-6) and gastrostomy tube placement (8-58%). In the severely affected population, risk of squamous cell carcinoma (SCC) was 76% and mortality from SCC reached 84% by age 40. Patients with RDEB experienced worsened quality of life (QOL), decreased functioning and social activities, and increased pain and itch when compared to other EB subtypes, other skin diseases, and the general population. Families of patients reported experiencing high rates of burden including financial burden (50-54%) and negative impact on private life (79%). Direct medical costs were high, though reported in few studies; annual payer-borne total medical costs in Ireland were $84,534 and annual patient-borne medical costs in Korea were $7392. Estimated annual US costs for wound dressings ranged from $4000 to $245,000. Patients spent considerable time changing dressings: often daily (13-54% of patients) with up to three hours per change (15-40%).Conclusion: Patients with RDEB and their families/caregivers experience significant economic, humanistic, and clinical burden. Further research is needed to better understand the costs of disease, how the burden of disease changes over the patient lifetime and to better characterize QOL impact, and how RDEB compares with other chronic, debilitating disorders. [ABSTRACT FROM AUTHOR]

Background: Alcohol is a leading cause of global suffering. Europe reports the uppermost volume of alcohol consumption in the world, with Ireland and the United Kingdom reporting the highest levels of binge drinking and drunkenness. Levels of consumption are elevated among university students. Thus, this literature review aims to summarise the current research on alcohol consumption among university students in the Republic of Ireland and the United Kingdom.Methods: MEDLINE, CINAHL, EMBASE and PsychInfo were systematically searched for literature from January 2002 until December 2014. Each database was searched using the following search pillars: alcohol, university student, Ireland or the United Kingdom and prevalence studies.Results: Two thousand one hundred twenty eight articles were retrieved from electronic database searching. These were title searched for relevance. 113 full texts were retrieved and assessed for eligibility. Of these, 29 articles were deemed to meet inclusion criteria for the review. Almost two thirds of students reported a hazardous alcohol consumption score on the AUDIT scale. Over 20% reported alcohol problems over their lifetime using CAGE while over 20% exceed sensible limits each week. Noteworthy is the narrowing of the gender gap throughout the past decade.Conclusion: This is the first review to investigate consumption patterns of university students in Ireland and the United Kingdom. A range of sampling strategies and screening tools are employed in alcohol research which preclude comparability. The current review provides an overview of consumption patterns to guide policy development. [ABSTRACT FROM AUTHOR]

Background: Accurate estimates of the burden of diabetes are essential for future planning and evaluation of services. In Ireland, there is no diabetes register and prevalence estimates vary. The aim of this review was to systematically identify and review studies reporting the prevalence of diabetes and complications among adults in Ireland between 1998 and 2015 and to examine trends in prevalence over time.Methods: A systematic literature search was carried out using PubMed and Embase. Diabetes prevalence estimates were pooled by random-effects meta-analysis. Poisson regression was carried out using data from four nationally representative studies to calculate prevalence rates of doctor diagnosed diabetes between 1998 and 2015 and was also used to assess whether the rate of doctor diagnosed diabetes changed over time.Results: Fifteen studies (eight diabetes prevalence and seven complication prevalence) were eligible for inclusion. In adults aged 18 years and over, the national prevalence of doctor diagnosed diabetes significantly increased from 2.2 % in 1998 to 5.2 % in 2015 (p trend ≤ 0.001). The prevalence of diabetes complications ranged widely depending on study population and methodology used (6.5-25.2 % retinopathy; 3.2-32.0 % neuropathy; 2.5-5.2 % nephropathy).Conclusions: Between 1998 and 2015, there was a significant increase in the prevalence of doctor diagnosed diabetes among adults in Ireland. Trends in microvascular and macrovascular complications prevalence could not be examined due to heterogeneity between studies and the limited availability of data. Reliable baseline data are needed to monitor improvements in care over time at a national level. A comprehensive national diabetes register is urgently needed in Ireland. [ABSTRACT FROM AUTHOR]

Background: The prevalence of childhood overweight and obesity in developed countries appears to be levelling off. As trends in childhood obesity prevalence have not been examined over the past decade in the Republic of Ireland, this systematic review aims to compile and synthesise all available information on the prevalence of overweight and obesity in primary school aged children between 2002 and 2012. Methods: Systematic review of published and grey literature containing data on objectively measured height and weight. Inclusion criteria included studies where data was collected between 2002 and 2012 from at least 200 primary school aged children in the Republic of Ireland. Database searching, Google searching, reference searching and contact with obesity experts was undertaken. Overweight, obesity and morbid obesity were defined using standard International Obesity Taskforce definitions. Study quality was assessed. Results: Fourteen studies (16 prevalence estimates) met the inclusion criteria. The combined prevalence of overweight and obesity within the studies ranged from 20-34%. No significant trend in overweight prevalence over time was observed (p=0.6). However, there was evidence of a slight decrease in obesity prevalence over the period (p=0.01), with a similar though non-significant decline in the prevalence of morbid obesity (p=0.2). Conclusion: The findings of this systematic review require cautious interpretation though the prevalence of childhood overweight and obesity in the Republic of Ireland has reached a plateau and may be falling. These findings provide some ground for optimism though the current plateau is at an unacceptably high level. Thus current population based preventive strategies need to be sustained and intensified. [ABSTRACT FROM AUTHOR]