Dee Snape

Epilepsy and social identity: the stigma of a chronic neurological disorder

Epilepsy is the most common serious neurological disorder worldwide, affecting about 50 million people. In most people with epilepsy, the disorder is clinically benign. However, because of the stigma associated with having epilepsy, which is common to many cultures, there can be a negative effect on the social identity of people with the disorder, particularly for those living in resource-poor countries. In this paper, we present general theories of stigma, as well as those specific to chronic illness. We relate these theories to the stigma associated with epilepsy throughout history and across cultures. We review research on the relation between stigma and the overall quality of life of people with epilepsy. Finally, we address reduction of the stigma.

Determinants of Quality of Life in People with Epilepsy

This article reviews evidence of quality of life (QOL) determinants in people affected by epilepsy, including detractors and promoters. Emerging factors of particular significance for QOL are highlighted, including seizure frequency, medication side effects, psychological comorbidity, and stigma and discrimination. This article also examines the role of resilience, interpreted in its widest sense, for promoting good QOL, even in the presence of poorly controlled seizures. The importance of addressing both clinical and wider psychosocial issues is highlighted and some possible directions for future research into QOL in epilepsy are suggested.

Values associated with public involvement in health and social care research: a narrative review

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 development of a QALY measure for epilepsy: NEWQOL-6D

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.

Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study

Objective 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. Design Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project. Setting The UK health and social care research community. Participants 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. Results 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. Conclusions 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.

Multiple impacts of epilepsy and contributing factors: findings from an ethnographic study in Vietnam

We investigated issues related to treatment, impact of epilepsy, attitudes toward epilepsy, and disclosure in Vietnam through in-depth interviews with people with epilepsy (PWE) and their family members. We found that although participants prefer Western to traditional treatment, they experience problems in accessing different kinds of antiepileptic drugs and higher-level treatment facilities and with respect to treatment expenses. The impact of epilepsy can be observed in a wide range of daily living activities which include working, education, marriage, and family formation. Although both families and society at large do not hold negative attitudes toward epilepsy, most PWE reported a sense of burden to others. Both PWE and family members generally prefer disclosing epilepsy rather than concealing it from others. Our findings strongly suggest a need in Vietnam for different types of antiepileptic drugs and epilepsy support information for PWE, family members, and the general public.

What parents of children who have received emergency care think about deferring consent in randomised trials of emergency treatments: postal survey.

Objective To investigate parents’ views about deferred consent to inform management of trial disclosure after a child’s death. Methods A postal questionnaire survey was sent to members of the Meningitis Research Foundation UK charity, whose child had suffered from bacterial meningitis or meningococcal septicaemia within the previous 5 years. Main outcome measures were acceptability of deferred consent; timing of requesting consent; and the management of disclosure of the trial after a child’s death. Results 220 families were sent questionnaires of whom 63 (29%) were bereaved. 68 families responded (31%), of whom 19 (28%) were bereaved. The majority (67%) was willing for their child to be involved in the trial without the trial being explained to them beforehand; 70% wanted to be informed about the trial as soon as their child’s condition had stabilised. In the event of a child’s death before the trial could be discussed the majority of bereaved parents (66% 12/18) anticipated wanting to be told about the trial at some time. This compared with 37% (18/49) of non-bereaved families (p = 0.06). Parents’ free text responses indicated that the word ‘trial’ held strongly negative connotations. A few parents regarded gaps in the evidence base about emergency treatments as indicating staff lacked expertise to care for a critically ill child. Bereaved parents’ free text responses indicated the importance of individualised management of disclosure about a trial following a child’s death. Discussion Deferred consent is acceptable to the majority of respondents. Parents whose children had recovered differed in their views compared to bereaved parents. Most bereaved parents would want to be informed about the trial in the aftermath of a child’s death, although a minority strongly opposed such disclosure. Distinction should be drawn between the views of bereaved and non-bereaved parents when considering the acceptability of different consent processes.

Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study

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.

Self-reported anxiety and sleep problems in people with epilepsy and their association with quality of life

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. Data were obtained via mailed questionnaires, supplemented by an internet survey, from PWE and age- and gender-matched controls. Based on self-reported symptoms, PWE were at higher risk of anxiety and sleep problems. Contributory factors for anxiety included poorer general health, worry about seizures, and self-reported antiepileptic drug (AED) side effects. Good social support emerged as protective for anxiety in PWE. Nighttime sleep problems were very common even in controls but were further elevated in PWE. Antiepileptic drug adverse events emerged as an important contributory factor for sleep problems. Trait anxiety emerged as significant for defining overall QOL, and its importance over state anxiety supports the notion of anxiety in PWE as a primarily premorbid condition. In contrast, sleep quality was not consistently predictive of QOL. Our study has important implications for clinical management, emphasizing the need for a holistic approach to address wider patient-reported problems as well as any epilepsy-specific ones.

Valuations of epilepsy-specific health states: a comparison of patients with epilepsy and the general population

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.