Browsing by Author "Brenna, Elenka"

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    Comparative Survey of People with ME/CFS in Italy, Latvia, and the UK : A Report on Behalf of the Socioeconomics Working Group of the European ME/CFS Research Network (EUROMENE)
    (2021-03-23) Brenna, Elenka; Araja, Diana; Pheby, Derek F.H.; Institute of Microbiology and Virology; Faculty of Pharmacy
    Background and Objectives: A comparative survey of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients was carried out in three countries, with the aim of identifying appropriate policy measures designed to alleviate the burden of disease both on patients and their families, and also on public institutions. The survey addressed demographic features, the economic impact of the disease on household incomes, patterns of medical and social care, specific therapies, social relationships, and the impact of the illness on quality of life. Materials and Methods: Parallel surveys were undertaken in Italy, Latvia, and the UK. There were 88 completed responses from Italy, 75 from Latvia, and 448 from the UK. To facilitate comparisons, 95% confidence intervals were calculated in respect of responses to questions from all three countries. To explore to what extent general practitioners (GPs) manage ME/CFS disease, a separate questionnaire for GPs, with questions about the criteria for granting a diagnosis, laboratory examinations, the involvement of specialists, and methods of treatment, was undertaken in Latvia, and there were 91 completed responses from GPs. Results: The results are presented in respect of sociodemographic information, household income, disease progression and management, perceived effectiveness of treatment, responsibility for medical care, personal care, difficulty explaining the illness, and quality of life. Demographic details were similar in all three countries, and the impact of illness on net household incomes and quality of life. There were significant differences between the three countries in illness progression and management, which may reflect differences in patterns of health care and in societal attitudes. Graded exercise therapy, practiced in the UK, was found to be universally ineffective. Conclusions: There were similarities between respondents in all three countries in terms of demographic features, the impact of the illness on household incomes and on quality of life, and on difficulties experienced by respondents in discussing their illness with doctors, but also differences in patterns of medical care, availability of social care, and societal attitudes to ME/CFS.
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    Comparative Survey of People with ME/CFS in Italy, Latvia, and the UK : A Report on Behalf of the Socioeconomics Working Group of the European ME/CFS Research Network (EUROMENE)
    (MDPI, 2022) Brenna, Elenka; Araja, Diana; Pheby, Derek F. H.; Pheby, Derek F.H.; Friedman, Kenneth J.; Murovska, Modra; Zalewski, Pawel; Institute of Microbiology and Virology; Department of Applied Pharmacy
    Background and Objectives: A comparative survey of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients was carried out in three countries, with the aim of identifying appropriate policy measures designed to alleviate the burden of disease both on patients and their families, and also on public institutions. The survey addressed demographic features, the economic impact of the disease on household incomes, patterns of medical and social care, specific therapies, social relationships, and the impact of the illness on quality of life. Materials and Methods: Parallel surveys were undertaken in Italy, Latvia, and the UK. There were 88 completed responses from Italy, 75 from Latvia, and 448 from the UK. To facilitate comparisons, 95% confidence intervals were calculated in respect of responses to questions from all three countries. To explore to what extent general practitioners (GPs) manage ME/CFS disease, a separate questionnaire for GPs, with questions about the criteria for granting a diagnosis, laboratory examinations, the involvement of specialists, and methods of treatment, was undertaken in Latvia, and there were 91 completed responses from GPs. Results: The results are presented in respect of sociodemographic information, household income, disease progression and management, perceived effectiveness of treatment, responsibility for medical care, personal care, difficulty explaining the illness, and quality of life. Demographic details were similar in all three countries, and the impact of illness on net household incomes and quality of life. There were significant differences between the three countries in illness progression and management, which may reflect differences in patterns of health care and in societal attitudes. Graded exercise therapy, practiced in the UK, was found to be universally ineffective. Conclusions: There were similarities between respondents in all three countries in terms of demographic features, the impact of the illness on household incomes and on quality of life, and on difficulties experienced by respondents in discussing their illness with doctors, but also differences in patterns of medical care, availability of social care, and societal attitudes to ME/CFS
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    The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of Myalgic Encephalomyelitis (ME/CFS): A Report from the European Network on ME/CFS (EUROMENE)
    (2020-04-07) Pheby, Derek F.H.; Araja, Diana; Berkis, Uldis; Brenna, Elenka; Cullinan, John; de Korwin, Jean-Dominique; Gitto, Lara; Hughes, Dyfrig A; Hunter, Rachael M; Trepel, Dominic; Wang-Steverding, Xia
    We have developed a Europe-wide approach to investigating the economic impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), facilitating acquisition of information on the economic burden of ME/CFS, and international comparisons of economic costs between countries. The economic burden of ME/CFS in Europe appears large, with productivity losses most significant, giving scope for substantial savings through effective prevention and treatment. However, economic studies of ME/CFS, including cost-of-illness analyses and economic evaluations of interventions, are problematic due to different, arbitrary case definitions, and unwillingness of doctors to diagnose it. We therefore lack accurate incidence and prevalence data, with no obvious way to estimate costs incurred by undiagnosed patients. Other problems include, as for other conditions, difficulties estimating direct and indirect costs incurred by healthcare systems, patients and families, and heterogeneous healthcare systems and patterns of economic development across countries. We have made recommendations, including use of the Fukuda (CDC-1994) case definition and Canadian Consensus Criteria (CCC), a pan-European common symptom checklist, and implementation of prevalence-based cost-of-illness studies in different countries using an agreed data list. We recommend using purchasing power parities (PPP) to facilitate international comparisons, and EuroQol-5D as a generic measure of health status and multi-attribute utility instrument to inform future economic evaluations in ME/CFS
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    Economic burden of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to patients : comparative study
    (2019) Arāja, Diāna; Brenna, Elenka; Hunter, Rachael M; Pheby, Derek; Berķis, Uldis; Lunga, Asja; Murovska, Modra; Rīga Stradiņš University
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    A Literature Review of GP Knowledge and Understanding of ME/CFS : A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)
    (MDPI, 2022) Pheby, Derek F. H.; Araja, Diana; Berkis, Uldis; Brenna, Elenka; Cullinan, John; de Korwin, Jean-Dominique; Gitto, Lara; Hughes, Dyfrig A; Hunter, Rachael M; Trepel, Dominic; Wang-Steverding, Xia; Pheby, Derek F.H.; Friedman, Kenneth J.; Murovska, Modra; Zalewski, Pawel; Department of Applied Pharmacy; Institute of Microbiology and Virology
    Background and Objectives: The socioeconomic working group of the European myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Research Network (EUROMENE) has con-ducted a review of the literature pertaining to GPs’ knowledge and understanding of ME/CFS; Materials and Methods: A MEDLINE search was carried out. The papers identified were reviewed following the synthesis without meta-analysis (SWiM) methodology, and were classified according to the focus of the enquiry (patients, GPs, database and medical record studies, evaluation of a training programme, and overview papers), and whether they were quantitative or qualitative in nature; Results: Thirty-three papers were identified in the MEDLINE search. The quantitative surveys of GPs demonstrated that a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it. It should be noted, though, that these papers were mostly from the United Kingdom. Patient surveys indicated that a similar proportion of patients was dissatisfied with the primary medical care they had received. These findings were consistent with the findings of the qualitative studies that were examined, and have changed little over several decades; Conclusions: Disbelief and lack of knowledge and understanding of ME/CFS among GPs is widespread, and the resultant diagnostic delays constitute a risk factor for severe and prolonged disease. Failure to diagnose ME/CFS renders problematic attempts to determine its prevalence, and hence its economic impact.
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    A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)
    (2021-01) Pheby, Derek F. H.; Araja, Diana; Berkis, Uldis; Brenna, Elenka; Cullinan, John; de Korwin, Jean-Dominique; Gitto, Lara; Hughes, Dyfrig A.; Hunter, Rachael M.; Trepel, Dominic; Wang-Steverding, Xia; Department of Applied Pharmacy; Institute of Microbiology and Virology
    Background and Objectives: The socioeconomic working group of the European myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Research Network (EUROMENE) has con-ducted a review of the literature pertaining to GPs’ knowledge and understanding of ME/CFS; Materials and Methods: A MEDLINE search was carried out. The papers identified were reviewed following the synthesis without meta-analysis (SWiM) methodology, and were classified according to the focus of the enquiry (patients, GPs, database and medical record studies, evaluation of a training programme, and overview papers), and whether they were quantitative or qualitative in nature; Results: Thirty-three papers were identified in the MEDLINE search. The quantitative surveys of GPs demonstrated that a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it. It should be noted, though, that these papers were mostly from the United Kingdom. Patient surveys indicated that a similar proportion of patients was dissatisfied with the primary medical care they had received. These findings were consistent with the findings of the qualitative studies that were examined, and have changed little over several decades; Conclusions: Disbelief and lack of knowledge and understanding of ME/CFS among GPs is widespread, and the resultant diagnostic delays constitute a risk factor for severe and prolonged disease. Failure to diagnose ME/CFS renders problematic attempts to determine its prevalence, and hence its economic impact.
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    Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe : A Report from the European ME/CFS Research Network (EUROMENE)
    (MDPI, 2022) Cullinan, John; Pheby, Derek F. H.; Arāja, Diāna; Berkis, Uldis; Brenna, Elenka; de Korwin, Jean-Dominique; Gitto, Lara; Hughes, Dyfrig A; Hunter, Rachael M; Trepel, Dominic; Wang-Steverding, Xia; Pheby, Derek F.H.; Friedman, Kenneth J.; Murovska, Modra; Zalewski, Pawel; Department of Applied Pharmacy; Institute of Microbiology and Virology
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    Perceptions of European ME/CFS experts concerning knowledge and understanding of ME/CFS among primary care physicians in Europe : A report from the European ME/CFS research network (EUROMENE)
    (2021-03) Cullinan, John; Pheby, Derek F.H.; Araja, Diana; Berkis, Uldis; Brenna, Elenka; De Korwin, Jean Dominique; Gitto, Lara; Hughes, Dyfrig A.; Hunter, Rachael M.; Trepel, Dominic; Wang-Steverding, Xia; Department of Applied Pharmacy; Institute of Microbiology and Virology
    Background and Objectives: We have conducted a survey of academic and clinical experts who are participants in the European ME/CFS Research Network (EUROMENE) to elicit perceptions of general practitioner (GP) knowledge and understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and suggestions as to how this could be improved. Materials and Methods: A questionnaire was sent to all national representatives and members of the EUROMENE Core Group and Management Committee. Survey responses were collated and then summarized based on the numbers and percentages of respondents selecting each response option, while weighted average responses were calculated for questions with numerical value response options. Free text responses were analysed using thematic analysis. Results: Overall there were 23 responses to the survey from participants across 19 different European countries, with a 95% country-level response rate. Serious concerns were expressed about GPs’ knowledge and understanding of ME/CFS, and, it was felt, about 60% of patients with ME/CFS went undiagnosed as a result. The vast majority of GPs were perceived to lack confidence in either diagnosing or managing the condition. Disbelief, and misleading illness attributions, were perceived to be widespread, and the unavailability of specialist centres to which GPs could refer patients and seek advice and support was frequently commented upon. There was widespread support for more training on ME/CFS at both undergraduate and postgraduate levels. Conclusion: The results of this survey are consistent with the existing scientific literature. ME/CFS experts report that lack of knowledge and understanding of ME/CFS among GPs is a major cause of missed and delayed diagnoses, which renders problematic attempts to determine the incidence and prevalence of the disease, and to measure its economic impact. It also contributes to the burden of disease through mismanagement in its early stages.
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    The Role of Prevention in Reducing the Economic Impact of ME/CFS in Europe : A Report from the Socioeconomics Working Group of the European Network on ME/CFS (EUROMENE)
    (MDPI, 2022) Pheby, Derek F. H.; Araja, Diana; Berkis, Uldis; Brenna, Elenka; Cullinan, John; de Korwin, Jean-Dominique; Gitto, Lara; Hughes, Dyfrig A; Hunter, Rachael M; Trepel, Dominic; Wang-Steverding, Xia; Pheby, Derek F.H.; Friedman, Kenneth J.; Murovska, Modra; Zalewski, Pawel; Department of Applied Pharmacy; Institute of Microbiology and Virology
    This report addresses the extent to which there may be scope for preventive programmes for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and, if so, what economic benefits may accrue from the implementation of such programmes. We consider the economic case for prevention programmes, whether there is scope for preventive programmes for ME/CFS, and what are the health and economic benefits to be derived from the implementation of such programmes. We conclude that there is little scope for primary prevention programmes, given that ME/CFS is attributable to a combination of host and environmental risk factors, with host factors appearing to be most prominent, and that there are few identified modifiable risk factors that could be the focus of such programmes. The exception is in the use of agricultural chemicals, particularly organophosphates, where there is scope for intervention, and where Europe-wide programmes of health education to encourage safe use would be beneficial. There is a need for more research on risk factors for ME/CFS to establish a basis for the development of primary prevention programmes, particularly in respect of occupational risk factors. Secondary prevention offers the greatest scope for intervention, to minimise diagnostic delays associated with prolonged illness, increased severity, and increased costs.
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    The role of prevention in reducing the economic impact of ME/CFS in Europe : A report from the socioeconomics working group of the European network on ME/CFS (EUROMENE)
    (2021-04) Pheby, Derek F.H.; Araja, Diana; Berkis, Uldis; Brenna, Elenka; Cullinan, John; De Korwin, Jean Dominique; Gitto, Lara; Hughes, Dyfrig A.; Hunter, Rachael M.; Trepel, Dominic; Wang-Steverding, Xia; Faculty of Pharmacy; Institute of Microbiology and Virology
    This report addresses the extent to which there may be scope for preventive programmes for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and, if so, what economic benefits may accrue from the implementation of such programmes. We consider the economic case for prevention programmes, whether there is scope for preventive programmes for ME/CFS, and what are the health and economic benefits to be derived from the implementation of such programmes. We conclude that there is little scope for primary prevention programmes, given that ME/CFS is attributable to a combination of host and environmental risk factors, with host factors appearing to be most prominent, and that there are few identified modifiable risk factors that could be the focus of such programmes. The exception is in the use of agricultural chemicals, particularly organophosphates, where there is scope for intervention, and where Europe-wide programmes of health education to encourage safe use would be beneficial. There is a need for more research on risk factors for ME/CFS to establish a basis for the development of primary prevention programmes, particularly in respect of occupational risk factors. Secondary prevention offers the greatest scope for intervention, to minimise diagnostic delays associated with prolonged illness, increased severity, and increased costs.