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.

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

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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). CONCLUSION: 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.

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.

The stigma of people with epilepsy is demonstrated at the internalized, interpersonal and institutional levels in a specific sociocultural context: findings from an ethnographic study in rural China.

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.

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.

Epilepsy stigma: what do we know and where next?

Stigma is a major issue for people who develop epilepsy. Reducing stigma is a major focus of activity for the epilepsy patient support groups globally. In this paper, we introduce some key ideas and debates about the nature of and drivers for the stigma of epilepsy, including recent arguments about the need to frame analyses of the nature of epilepsy stigma within sociological debates about conflict and power. We then consider the role of the legislative process for redressing power imbalances that promote or maintain epilepsy stigma; and the value of tailored educational campaigns and programmes directed at stigma reduction. Finally, we consider the nature of 'difference' as experienced by people with epilepsy and how that difference translates into stigma; and provide evidence from a specific targeted intervention to combat epilepsy stigma that its reduction is an achievable goal.

Stigma of people with epilepsy in China: views of health professionals, teachers, employers, and community leaders.

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.

Seizure First Aid Training For people with Epilepsy (SAFE) frequently attending emergency departments and their significant others: results of a UK multi-centre randomised controlled pilot trial.

OBJECTIVE: To determine the feasibility and optimal design of a randomised controlled trial (RCT) of Seizure First Aid Training For Epilepsy (SAFE). DESIGN: Pilot RCT with embedded microcosting. SETTING: Three English hospital emergency departments (EDs). PARTICIPANTS: Patients aged ≥16 with established epilepsy reporting ≥2 ED visits in the prior 12 months and their significant others (SOs). INTERVENTIONS: Patients (and their SOs) were randomly allocated (1:1) to SAFE plus treatment-as-usual (TAU) or TAU alone. SAFE is a 4-hour group course. MAIN OUTCOME MEASURES: Two criteria evaluated a definitive RCT's feasibility: (1) ≥20% of eligible patients needed to be consented into the pilot trial; (2) routine data on use of ED over the 12 months postrandomisation needed securing for ≥75%. Other measures included eligibility, ease of obtaining routine data, availability of self-report ED data and comparability, SAFE's effect and intervention cost. RESULTS: Of ED attendees with a suspected seizure, 424 (10.6%) patients were eligible; 53 (12.5%) patients and 38 SOs consented. Fifty-one patients (and 37 SOs) were randomised. Routine data on ED use at 12 months were secured for 94.1% patients. Self-report ED data were available for 66.7% patients. Patients reported more visits compared with routine data. Most (76.9%) patients randomised to SAFE received it and no related serious adverse events occurred. ED use at 12 months was lower in the SAFE+TAU arm compared with TAU alone, but not significantly (rate ratio=0.62, 95% CI 0.33 to 1.17). A definitive trial would need ~674 patient participants and ~39 recruitment sites. Obtaining routine data was challenging, taking ~8.5 months. CONCLUSIONS: In satisfying only one predetermined 'stop/go' criterion, a definitive RCT is not feasible. The low consent rate in the pilot trial raises concerns about a definitive trial's finding's external validity and means it would be expensive to conduct. Research is required into how to optimise recruitment from the target population. TRIAL REGISTRATION NUMBER: ISRCTN13871327.

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.

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.

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.

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.