Ann Jacoby

University of Liverpool, Liverpool, England, United Kingdom

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Publications (156)703.3 Total impact

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    ABSTRACT: Pharmacogenetic studies have identified the presence of the HLA-A*31:01 allele as a predictor of cutaneous adverse drugs reactions (ADRs) to carbamazepine. This study aimed to ascertain the preferences of patients and clinicians to inform carbamazepine pharmacogenetic testing services. Attributes of importance to people with epilepsy and neurologists were identified through interviews and from published sources. Discrete choice experiments (DCEs) were conducted in 82 people with epilepsy and 83 neurologists. Random-effects logit regression models were used to determine the importance of the attributes and direction of effect. In the patient DCE, all attributes (seizure remission, reduction in seizure frequency, memory problems, skin rash and rare, severe ADRs) were significant. The estimated utility of testing was greater, at 0.52 (95% CI, 0.19 to 1.00) than not testing at 0.33 (95% CI, -0.07 to 0.81). In the physician DCE, cost, inclusion in the British National Formulary, coverage, negative predictive value (NPV), and positive predictive value (PPV) were significant. Marginal rates of substitution indicated that neurologists were willing to pay £5.87 for a 1 percentage point increase in NPV and £3.99 for a 1 percentage point increase in PPV. The inclusion of both patients' and clinicians' perspectives represents an important contribution to the understanding of preferences towards pharmacogenetic testing prior to initiating carbamazepine. Both groups identified different attributes but had generally consistent preferences. Patients' acceptance of a decrease in treatment benefit for a reduced chance of severe ADRs adds support for the implementation of HLA-A*31:01 testing in routine practice. This article is protected by copyright. All rights reserved.
    British Journal of Clinical Pharmacology 07/2015; DOI:10.1111/bcp.12715 · 3.88 Impact Factor
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    ABSTRACT: To compare quality-of-life (QoL) outcomes over 2 years following initiation of treatment with a standard or newer antiepileptic drug (AED) in adults with new-onset epilepsy. To examine the impact of seizure remission and failure of initial treatment on QoL outcomes measured over 2 years. We conducted a pragmatic, randomized, unblinded, multicenter, parallel-group clinical trial (the Standard and New Antiepileptic Drugs [SANAD] trial) comparing clinical and cost effectiveness of initiating treatment with carbamazepine versus lamotrigine, gabapentin, oxcarbazepine and topiramate, and valproate versus lamotrigine and topiramate. QoL data were collected by mail at baseline, 3 months, and at 1 and 2 years using validated measures. These data were analyzed using longitudinal data models. Continuous QoL measures, time to 12-month remission and time to treatment withdrawal were explored using joint models. Baseline questionnaires were returned by 1,575 adults; 1,439 returned the 3-month questionnaire, 1,274 returned the 1-year questionnaire, and 1,121 returned the 2-year questionnaire. There were few statistically significant differences between drugs over 2 years in QoL outcomes. Significant association was identified between QoL scores over the 2-year time frame and the risk of experiencing a 12-month remission or treatment withdrawal over that period. The choice of initial treatment had no significant effect on QoL by 2-year follow-up. However, overall QoL was reduced with continued seizures, adverse events, and failure of the initial treatment. Wiley Periodicals, Inc. © 2015 International League Against Epilepsy.
    Epilepsia 01/2015; 56(3). DOI:10.1111/epi.12913 · 4.57 Impact Factor
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    ABSTRACT: Background To investigate the nature of the research process as a whole, factors that might influence the way in which research is carried out, and how researchers ultimately report their findings.Methods Semi-structured qualitative telephone interviews with authors of trials, identified from two sources: trials published since 2002 included in Cochrane systematic reviews selected for the ORBIT project; and trial reports randomly sampled from 14,758 indexed on PubMed over the 12-month period from August 2007 to July 2008.ResultsA total of 268 trials were identified for inclusion, 183 published since 2002 and included in the Cochrane systematic reviews selected for the ORBIT project and 85 randomly selected published trials indexed on PubMed. The response rate from researchers in the former group was 21% (38/183) and in the latter group was 25% (21/85). Overall, 59 trialists were interviewed from the two different sources. A number of major but related themes emerged regarding the conduct and reporting of trials: establishment of the research question; identification of outcome variables; use of and adherence to the study protocol; conduct of the research; reporting and publishing of findings. Our results reveal that, although a substantial proportion of trialists identify outcome variables based on their clinical experience and knowing experts in the field, there can be insufficient reference to previous research in the planning of a new trial. We have revealed problems with trial recruitment: not reaching the target sample size, over-estimation of recruitment potential and recruiting clinicians not being in equipoise. We found a wide variation in the completeness of protocols, in terms of detailing study rationale, outlining the proposed methods, trial organisation and ethical considerations.Conclusion Our results confirm that the conduct and reporting of some trials can be inadequate. Interviews with researchers identified aspects of clinical research that can be especially challenging: establishing appropriate and relevant outcome variables to measure, use of and adherence to the study protocol, recruiting of study participants and reporting and publishing the study findings. Our trialists considered the prestige and impact factors of academic journals to be the most important criteria for selecting those to which they would submit manuscripts.
    Trials 01/2015; 16(1):16. DOI:10.1186/s13063-014-0536-6 · 1.73 Impact Factor
  • Ann Jacoby · Dee Snape · Steven Lane · Gus A. Baker ·
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    ABSTRACT: Comorbidities are common in epilepsy, and their role in quality of life (QOL) is receiving increasing scrutiny. Considerable attention has been focused on the role of depression, the most common comorbidity, with rather less attention paid to its frequent concomitant, anxiety, and other conditions known to be at increased prevalence among people with epilepsy (PWE) when compared to the general population. In this paper, we report findings from a UK-based survey in which we examined self-reporting of two common comorbidities, anxiety and sleep problems, factors associated with them, and their role in QOL in people with and without epilepsy.
    Epilepsy & Behavior 01/2015; 43. DOI:10.1016/j.yebeh.2014.09.071 · 2.26 Impact Factor
  • Ann Jacoby ·

    Epilepsy & Behavior 01/2015; 44. DOI:10.1016/j.yebeh.2014.12.008 · 2.26 Impact Factor
  • Ann Jacoby · Gus Baker ·

    Epilepsy & Behavior 09/2014; 40. DOI:10.1016/j.yebeh.2014.09.008 · 2.26 Impact Factor
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    ABSTRACT: Objective 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. Background Internationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured. Design Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. Sample Clinical and non-clinical academics, members of the public, research managers, commissioners and funders. Findings This study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards. Conclusions This study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers guidance to researchers and members of the public involved in the PI process.
    BMJ Open 06/2014; 4(6):e004943. DOI:10.1136/bmjopen-2014-004943 · 2.27 Impact Factor
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    ABSTRACT: Aims: 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. Methods: The Time Trade Off preference elicitation technique was used to value eight NEWQOL-6D health states. The general population sample was recruited and interviewed in their homes, and the sample with epilepsy was recruited and interviewed in an epilepsy service in North West England. Descriptive analysis and regression modeling were used to compare health state values across the populations. Results: A sample of 70 people with epilepsy and a sample of 60 members of the general population were included. The populations differed across a range of background characteristics, but there were limited differences between the health state values. Patients provided significantly higher (better) values for the most severe health state described by the NEWQOL-6D (p<0.01) and nonsignificant higher values for states with intermediate severity. The general population health state value was only higher for the best health state described by the NEWQOL-6D. Conclusions: The similarities in the patient and general population values for NEWQOL-6D health states suggest that the use of the general population utility weights for the estimation of QALYs in the economic evaluation of epilepsy interventions is appropriate and largely representative of patient preferences.
    Epilepsy & Behavior 05/2014; 36C:12-17. DOI:10.1016/j.yebeh.2014.04.011 · 2.26 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. DOI:10.1007/s11910-014-0444-x · 3.06 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 04/2014; 33:59–68. DOI:10.1016/j.yebeh.2014.02.015 · 2.26 Impact Factor
  • Ann Jacoby ·

    Seizure 01/2014; 23(5). DOI:10.1016/j.seizure.2014.01.015 · 1.82 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. DOI:10.1136/bmjopen-2013-004217 · 2.27 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; 18(5). DOI:10.1111/hex.12158 · 3.41 Impact Factor
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    Trials 11/2013; 14(Suppl 1):O33. DOI:10.1186/1745-6215-14-S1-O33 · 1.73 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; 13(12). DOI:10.1586/14737175.2013.850032 · 2.78 Impact Factor
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    Value in Health 11/2013; 16(7):A626. DOI:10.1016/j.jval.2013.08.1845 · 3.28 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; 23(2). DOI:10.1016/j.seizure.2013.10.008 · 1.82 Impact Factor
  • D. A. Snape · A. Jacoby · F. Gradinger · A. Gibson · J. Newman · J. Popay ·

    Journal of Epidemiology &amp Community Health 09/2013; 67(Suppl 1):A44-A44. DOI:10.1136/jech-2013-203126.95 · 3.50 Impact Factor
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    V M Swallow · A Jacoby ·

  • Joanne Crossley · Ann Jacoby · Gus A Baker ·
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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; 26(2). DOI:10.1016/j.yebeh.2012.11.046 · 2.26 Impact Factor

Publication Stats

8k Citations
703.30 Total Impact Points


  • 2001-2015
    • University of Liverpool
      • Department of Public Health and Policy
      Liverpool, England, United Kingdom
  • 2009
    • University of Leeds
      Leeds, England, United Kingdom
    • Liverpool Community College
      Liverpool, England, United Kingdom
  • 2007
    • University of Leicester
      • Department of Health Sciences
      Leiscester, England, United Kingdom
  • 2005
    • The University of Manchester
      Manchester, England, United Kingdom
  • 1992-2005
    • Newcastle University
      • Centre for Oral Health Research
      Newcastle upon Tyne, ENG, United Kingdom
  • 1999
    • The Newcastle upon Tyne Hospitals NHS Foundation Trust
      Newcastle-on-Tyne, England, United Kingdom
  • 1994
    • Liverpool Hospital
      Liverpool, New South Wales, Australia