Ann Jacoby

University of Liverpool, Liverpool, England, United Kingdom

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Publications (144)603.99 Total impact

  • Ann Jacoby, Gus Baker
    Epilepsy & Behavior 09/2014; · 2.06 Impact Factor
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    ABSTRACT: Utility values that can be used in the economic evaluation of treatments for epilepsy can be elicited from the general population and the patient population, but it is unclear how the health state values differ. The aim of this study is to compare the preferences of the general population and a sample of people with epilepsy for health states described by the NEWQOL-6D QALY measure.
    Epilepsy & Behavior 05/2014; 36C:12-17. · 2.06 Impact Factor
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    ABSTRACT: Stigma remains a weight those with epilepsy have to carry and a defining feature of their identity. This article highlights recent studies published in the area of stigma, knowledge, attitudes, and practices regarding epilepsy. First, recent studies addressing the frequency of stigma and factors associated with stigma are discussed. Second, tools developed to ascertain stigma in epilepsy, or knowledge, attitudes, and practices, are examined. Lastly, we discuss interventions recently studied to reduce stigma in epilepsy.
    Current Neurology and Neuroscience Reports 05/2014; 14(5):444. · 3.78 Impact Factor
  • Ann Jacoby
    Seizure 01/2014; · 2.00 Impact Factor
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    ABSTRACT: There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI. Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project. The UK health and social care research community. Stakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review. We identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whether the purpose of PI in health and social care research is to bring about service change or generate new knowledge. There were large differences by group in the percentages endorsing the ethical justification for PI and the argument that PI equalises power imbalances. With regard to practical implementation of PI, research support infrastructures were reported as lacking. Participants reported shortcomings in the uptake and practice of PI. Embedding PI practice and evaluation in research study designs was seen as fundamental to strengthening the evidence base. Our findings highlight the extent to which PI is already embedded in research. However, they also highlight a need for 'best practice' standards to assist research teams to understand, implement and evaluate PI. These findings have been used in developing a Public Involvement Impact Assessment Framework (PiiAF), which offers guidance to researchers and members of the public involved in the PI process.
    BMJ Open 01/2014; 4(1):e004217. · 2.06 Impact Factor
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    ABSTRACT: Previous research identifies loss as a key concept for our understanding of the impact of chronic illness. In this in-depth qualitative study, we explored the utility of the concept of loss and loss replacement as a means of gaining a fuller understanding of the implications of a diagnosis of epilepsy for overall quality of life (QOL). Potential participants were identified from the database of a large UK-based randomized controlled trial of antiepileptic drug treatment for new-onset epilepsy and selected using purposive sampling methods. In-depth interviews were conducted with 67 people; interview material was analyzed thematically. Our findings confirm ‘loss’ as a key concept in understanding epilepsy impact. Participants cited profound physical and social losses, and the links between these and psychological loss were clearly articulated. Informants described two main processes via which the linked losses they experienced occurred: personal withdrawal processes and externally enforced processes. Seizure control was integral to restoring psychological well-being and a sense of normality but was only one of a number of influences moderating the degree of loss experienced following seizure onset. Our work emphasizes that people with epilepsy (PWE) require active support for their continued engagement or reengagement in roles and activities identified as central to their psychological well-being and overall QOL. Achieving this requires a multiagency approach to drive forward key strategies for reduction of the negative impacts of epilepsy and to engender a sense of normality in the context of a condition often experienced as placing the individual outside the socially determined parameters of the ‘normal’.
    Epilepsy & Behavior 01/2014; 33:59–68. · 2.06 Impact Factor
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    ABSTRACT: To explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research.
    BMJ Open 01/2014; 4(6):e004943. · 2.06 Impact Factor
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    ABSTRACT: Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI. The narrative review reported here is part of a larger MRC-funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework. We undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty-four chapters in sixteen textbooks. Three overarching value systems were identified, each containing five value clusters. (i) A system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; accountability/transparency; rights; and ethics (normative values). (ii). A system concerned with the consequences of public involvement in research including value clusters associated with effectiveness; quality/relevance; validity/reliability; representativeness/objectivity/generalizability; and evidence (substantive values). (iii) A system concerned with the conduct of public involvement in including value clusters associated with Partnership/equality; respect/trust; openness and honesty; independence; and clarity (process values). Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values. The findings suggest that research teams should consider and make explicit the values they attach to PI in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of PI for researchers, lay experts and the research.
    Health expectations: an international journal of public participation in health care and health policy 12/2013; · 1.80 Impact Factor
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    ABSTRACT: In this review, we attempt to bring the reader up to date with recent developments in the area of assessment of quality of life (QOL) of patients with epilepsy, in both the research and clinical contexts. We present evidence from recent publications on the major and most commonly used QOL instruments for both adults and children with epilepsy, including both strengths and limitations. We discuss both generic measures and ones that have been developed specifically for use in the epilepsy population. We draw attention to some of the broader issues that render the QOL assessment endeavor a somewhat complex one-in particular, that epilepsy is not a single condition, with a common clinical trajectory; and that QOL measures as currently configured almost universally focus on its negative impacts, largely neglecting the possibility of those affected being able to retain reasonable social adjustment and life satisfaction. Finally, we suggest that further work needs to focus on plugging the current evidence gaps in relation to psychometric and cross-cultural applicability issues; and on the value of QOL instruments in the clinical care setting. We conclude by highlighting a number of issues from the QOL literature that will, in our view, be the focus of increasing research interest in the next few years.
    Expert Review of Neurotherapeutics 11/2013; · 2.96 Impact Factor
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    ABSTRACT: It is believed that a large number of factors influence feelings of stigma, but their relative contribution is not yet entirely clear. Most studies to date were conducted using the Epilepsy Stigma Scale (ESS); only one used a revised version of the ESS (rESS). The following study aims to determine factors contributing to epilepsy stigma in outpatients with chronic epilepsy in Croatia, and to analyze some psychometric properties of the Croatian translation of the rESS. Alongside standard testing for validity of the scale, a simulation model of the original ESS (smESS) was created. This model, which does not include a grading Likert 0-3 scale, was compared with the rESS. In total, 159 out of 298 subjects (53%) reported feeling stigmatised, with 136 (45%) mild to moderately and 23 (8%) highly. Internal consistency of the Croatian translation of the rESS was 0.887. Feelings of stigma were significantly associated with age ≤50 years, younger age of epilepsy onset, more than 50 seizures to date, generalized tonic-clonic seizures, and a shorter seizure-free period. Multiple stepwise regression showed number of seizures to date as a significant variable (Beta=0.246). By adapting data into the smESS significant associations with younger age and age of epilepsy onset were lost. Internal consistency of the smESS was 0.849. The Croatian translation of the rESS has been proved to be a suitable instrument for diagnosing epilepsy stigma. The results of our model point to the possibility that the rESS might be more sensitive than the original ESS.
    Seizure 10/2013; · 2.00 Impact Factor
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    A Jacoby, V M Swallow
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    A Jacoby, V M Swallow
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    V M Swallow, A Jacoby
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    ABSTRACT: The Impact of Epilepsy Scale was designed to assess the perceived impact of epilepsy on a number of different aspects of daily life. Following criticisms of the scale's content and focus, it was revised to incorporate an amended response continuum and additional items. A total of 1534 people with epilepsy completed the revised scale, along with other quality-of-life (QOL) measures, as part of the Standard and New Antiepileptic Drugs (SANAD) trial (Marson et al., 2007a,b) [9,10]. The revised scale had good reliability (internal consistency alpha coefficient of .83) and acceptable validity (concurrent and known-groups). Floor and ceiling effects were negligible. Therefore, the Revised Liverpool Impact of Epilepsy Scale is a reliable and valid instrument for assessing the perceived impact of epilepsy in people with new-onset epilepsy.
    Epilepsy & Behavior 01/2013; · 2.06 Impact Factor
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    ABSTRACT: Epilepsy is a common chronic neurological disease. One of its characteristics is that it can bring severe stigma for patients. At the same time as controlling the epileptic seizures, taking appropriate measures to reduce the stigma of epilepsy is an important aspect of any comprehensive intervention strategy. We examined the views of 106 participants of different target groups, including patients with epilepsy (PWE), their family members, neighbors, teachers, employers, community administrators, doctors and nurses, using one-to-one in-depth interviews and group discussions. The discussions covered the following aspects related to epilepsy: the participants' understanding of epilepsy, the patients' own perception of epilepsy, attitudes of the surrounding people, the social and cultural environment, social support available to them, and government regulations and policies. We found that the stigma of epilepsy is a very negative self-feeling from the patients' perspective. Many complex and diverse factors determine its formation and severity. The stigma of epilepsy, in a particular social and cultural context, can be demonstrated at the internalized, interpersonal and institutional levels. Hence, we suggest that effective measures to alleviate stigma should be based on ways of eliminating factors that cause institutional stigma. Additionally, depending on the specific circumstances of PWE, a personalized approach to eliminate factors that cause internalized and interpersonal stigma needs to be adopted. Only by addressing impacting factors at each of these three levels can the stigma of PWE in China be alleviated or even eliminated.
    Epilepsy & Behavior 10/2012; 25(2):282-8. · 2.06 Impact Factor
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    ABSTRACT: Cost-utility analysis is used to inform the allocation of healthcare resources, using the quality-adjusted life year (QALY) as the outcome measure. We report the development of an epilepsy-specific QALY measure (NEWQOL-6D) derived from the NEWQOL measure of health-related quality of life. Firstly, psychometric and Rasch analyses established the dimension structure of NEWQOL and generated a reduced health state classification system including one item per dimension. Secondly, health states generated by the classification system were valued using Time Trade Off, and the results were modeled to generate a utility score for every health state. A classification system with 6 dimensions (worry about attacks; depression; memory; concentration; stigma; control) was produced, and generalized least squares regression was used to generate utility scores for every health state. This study is the first attempt to derive an epilepsy-specific QALY measure, and the utility values can be used in the economic evaluation of emerging technologies for epilepsy.
    Epilepsy & Behavior 04/2012; 24(1):36-43. · 2.06 Impact Factor
  • N Aydemir, A Jacoby, C Ozkara
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    ABSTRACT: The purpose of this cross-sectional study was to explore the attitudes of individuals with epilepsy (IWE) toward their condition via self-reported changes in the feelings/thoughts about having epilepsy. We aimed to investigate whether individuals with epilepsy perceive a change in their initial attitudes toward the condition over time. Additionally, if a change was perceived, the variables which predict the current thoughts/feelings toward epilepsy were also examined. Seventy adult IWE participated in the study. Of the 70 participants in the study, 25.7% retained their initial feelings/thoughts without any change. Among the IWE who reported no-change, the most common category was "negative from the beginning". On the other hand, 74.3% of the participants reported a change. Of the 74.3% of participants reporting change, the most common direction was from negative to positive" (79.2%) seeming to indicate a positive adjustment over the passage of time. In a logistic regression, only three factors were found to predict positive feelings/thoughts toward epilepsy: a clear understanding of the condition, low levels of depression and current employment status. Finally, there is a discussion of the potential applications of the IWE' self-assessment of their attitudes.
    Seizure 04/2012; 21(5):385-90. · 2.00 Impact Factor
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    ABSTRACT: To understand patients' perspectives on how a diagnosis of a life-limiting illness was first communicated to them. In-depth qualitative interviews with 50 people ranging in age from 30 to 93 years, diagnosed with cancer (31), heart failure (13), stroke (three) or neurological conditions (three) and thought by the responsible health professional to be in the last year of life. Participants from two areas of Northern England were recruited through specialist nurses or hospital consultants and interviewed in their current place of residence. Transcribed data were analysed using Framework. Patients were most likely to recall the pace and clarity with which bad news was conveyed. A direct approach was most common, without much prior warning for the patients. Direct information was usually received well when the patient knew the health professional and when it had been suggested that the patient should be accompanied to the appointment. Some professionals did work to set the scene for the eventual news, with a gradual build-up of information, and narrowing down of options. This approach was perceived as appropriate and sensitive. People with heart failure had engaged in much less discussion about their condition, and most did not recall a specific conversation with their doctor about their prognosis. Bad news is not always broken in a sensitive way, despite considerable efforts to address this issue. Relatively minor changes to practice could improve the patient experience: greater preparation, provision of sufficient time in consultations and cautious disclosure for new patients.
    Supportive and Palliative Care 03/2012; 2(1):24-8.
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    ABSTRACT: to provide insight into pregnant women's experiences of participating in a large multi-centre randomised trial. qualitative semi-structured interviews. six UK maternity units. women recruited to the Magpie Trial. The Magpie Trial was a trial of prophylactic anticonvulsants for women with severe pre-eclampsia. MEASUREMENTS FINDINGS: a number of major but related themes emerged regarding influences on the women's decision-making: unpredictability of pre-eclampsia; quality of information received; role of others in the decision-making process; perceived personal benefit from trial participation; and perception of voluntariness of joining. the data presented give valuable insights into the women's views and experiences of decision-making. Research into many of the other elements of care given during pregnancy and childbirth is still needed, and with this need comes the ethical responsibility of researchers to ensure trials are performed in the most scientifically robust ways, which are also acceptable to women. To examine the experiences of those involved in trial participation and their views about doing so is a crucial way of advancing this. The QUOTE Study increases understanding of the experiences of women participating in a randomised controlled trial. the general implication for practice is that procedures are needed that can improve the design and conduct of randomised trials and therefore ultimately enhance the experience for future women. Recommendations include informed consent should be tailored, recognising individual differences in the desire for information. For instance the time individuals need to make consent decisions varies, as do their desires to consult with family before agreeing.
    Midwifery 09/2011; 28(4):E478-85. · 1.12 Impact Factor
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    ABSTRACT: To identify possible sources of stigma of epilepsy in key informant groups, "mini-ethnographic" studies were conducted in rural and urban locations in China. Data collected from 45 semistructured interviews and 8 focus group discussions (6 persons each) were analyzed to investigate the world experienced by people with epilepsy. Underpinned by a social constructionist approach to data analysis, emerging themes were identified with the use of computer-assisted data analysis (NVivo 8). A hierarchical model was then constructed, to include practical level issues (attitudes toward risk, attitudes toward costs of epilepsy) and cultural level issues (contrast between rurality and tradition and urbanization and modernity in the Chinese context). The analysis enriches current research on factors and sources of stigma of epilepsy and highlights issues for future practice.
    Epilepsy & Behavior 05/2011; 21(3):261-6. · 2.06 Impact Factor

Publication Stats

5k Citations
603.99 Total Impact Points


  • 1991–2014
    • University of Liverpool
      • • Department of Public Health and Policy
      • • Department of Molecular and Clinical Pharmacology
      • • School of Biological Sciences
      Liverpool, England, United Kingdom
  • 2013
    • Klinička bolnica "Sveti Duh"
      • Department of Neurology
      Zagrabia, Grad Zagreb, Croatia
  • 2012
    • Beijing Tiantan Hospital
      Peping, Beijing, China
  • 2011
    • Peking University
      • Institute of Population Research
      Beijing, Beijing Shi, China
    • University of Campinas
      • Faculdade de Ciências Médicas (FCM)
      Campinas, Estado de Sao Paulo, Brazil
  • 2010
    • National Institute for Health and Clinical Excellence
      Londinium, England, United Kingdom
  • 2009
    • Izmir University of Economics
      • Department of Psychology
      İzmir, Izmir, Turkey
    • University of Wisconsin, Madison
      • Department of Neurology
      Madison, MS, United States
  • 2008
    • Queen Elizabeth Hospital Birmingham
      Birmingham, England, United Kingdom
    • The Walton Centre NHS Foundation Trust
      Liverpool, England, United Kingdom
  • 2005–2008
    • The University of Manchester
      • School of Nursing, Midwifery and Social Work
      Manchester, ENG, United Kingdom
    • Bradford Teaching Hospitals NHS Foundation Trust
      Bradford, England, United Kingdom
  • 2007
    • University of Leicester
      • Department of Health Sciences
      Leicester, ENG, United Kingdom
  • 1992–2007
    • Newcastle University
      • • Institute of Health and Society
      • • Centre for Oral Health Research
      Newcastle upon Tyne, ENG, United Kingdom
  • 2002
    • Yale University
      • Department of Psychiatry
      New Haven, CT, United States
  • 2001–2002
    • Northumbria University
      • School of Health, Community and Education Studies
      Newcastle-on-Tyne, England, United Kingdom
    • The Bracton Centre, Oxleas NHS Trust
      Дартфорде, England, United Kingdom
  • 1999
    • University of Newcastle
      • School of Health Sciences
      Newcastle, New South Wales, Australia