Quality of life in epilepsy (QOLIE): Insights about epilepsy and support groups from people with epilepsy (San Francisco Bay Area, USA) (original) (raw)
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Epilepsy & Behavior, 2006
Epilepsy affects a larger number of individuals than previously thought-up to 2% of the population-and its effects reach further. Yet epilepsy, with its associated lingering stigma and fear, has remained in the background in terms of services and research. Traditional quantitative research often falls short when trying to describe the impact of epilepsy on the lives of individuals and their families. In the present study, focus groups were held throughout South Carolina to discuss individuals' experiences with accessing epilepsy-related services and health care, and what life with epilepsy is like. Following qualitative data analysis, findings included two themes. One theme focuses on the ongoing search for services and help. The second theme concerns the experiences of living life with epilepsy. Also highlighted are recommendations for potential improvements in public awareness and professional training, and helpful interventions.
Epilepsy & Behavior, 2009
As children's perceptions of their quality of life are unique, it is essential to elicit their concerns directly rather than from proxy informants. This study therefore aimed to investigate the impact of childhood epilepsy on quality of life directly from the child's perspective. Focus group techniques and qualitative analysis were utilized. Twenty-two children between 7 years 4 months and 12 years 6 months of age (11 females, 11 males) were stratified by age (7-8, 9-10, 11-12 years) into five focus groups. Data were transcribed and analyzed using grounded theory techniques to generate themes and categories. Themes were presented using the children's language. Two major themes were identified, ''things to do with growing up" and ''things to do with epilepsy," with five and four subthemes, respectively. No significant age-related differences were found. A conceptual model illustrates these findings, and comparisons are made to previous research with adolescents using similar methodology.
Pakistan Journal of Health Sciences
The present study assessed the role psychosocial (social support, resilience and psychological distress) and clinical determinants (duration of disease and number of seizures per month) in predicting quality of life in epileptic patients. Past research findings have established the role of social support and resilience in impacting psychological distress in quality of life in epileptic patients. Objectives: To evaluate the psychosocial and clinical determinants of quality of life in epileptic patients and to contribute to the gap in the literature. Methods: A quantitative research design was used for the study in which out of 230 progressive patients, 200 were recruited for the study out of which 117 suffered from generalized and 73 suffered from focal epilepsy. In terms of gender differentiation, 110 were male and 90 were females. Kessler Psychological Distress Scale, Brief Resilience Scale and Social Provisions Scale were used. Clinical determinants were assessed through measuring...
Quality of Life of People with Epilepsy: A European Study
Epilepsia, 1997
To study the impact of epilepsy and its treatment on people with epilepsy in Europe. We therefore aimed to collect data from as many countries as possible. Methods: Clinical and demographic details and information. about psychosocial functioning was collected using selfcompleted questionnaires mailed to members of epilepsy support groups. Results: Quality of life data was collected from >5,000 patients living in 15 countries in Europe. Over a third of all respondents had frequent seizures, and a fifth believed that their seizures were not well enough controlled by antiepileptic medication. Reported levels of side effects from medication were high. A significant number of respondents reported changing their medication because of side effects or poor control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. Half of all respondents felt stigmatised by their epilepsy. There were significant differences by seizure type and frequency in the way respondents scored on measures of the perceived impact of their condition, the stigma associated with it and their health status as measured by a generic scale, the SF36. Conclusions: This study confirms the findings of previous smaller-scale studies that reducing side effects and achieving better control of seizures are key to improving the quality of life of people with epilepsy, as is reducing the stigma and handicap associated with it. Key Words: Epilepsy-Quality of life-European-Psychosocial-Adverse drug effects. Epilepsy, like many other chronic conditions, is characterized by uncertainty. Its severity and prognosis are variable, and seizures, its outward manifestation, are unpredictable. Some chronic conditions are also stigmatizing; and epilepsy, for reasons rooted deep in its history, is a stigmatizing condition par excellence. Because of its clinical uncertainty and its social meaning, the impact of epilepsy on a person's quality of life (QOL) can be significant. Earlier studies have highlighted several areas of particular concern to people with epilepsy (14). People with epilepsy are prone to have poorer self-esteem and higher levels of anxiety and depression than people with epilepsy (5,6). They are more likely to be under-or unemployed (7-lo), and lower rates of marriage and greater social isolation have been reported in adults with epilepsy as compared with others (1,5,11,12). Some, though not all, people with epilepsy feel stigmatized by their condition (13,14). Epidemiological studies have shown that seizures in 7040% of people who develop epilepsy will be well controlled by antiepileptic drug (AED) treatment (15), and there is evidence that epilepsy does not profoundly
Quality of life in newly-debuted epilepsy. An empirical study
Acta Neurol Scand, 2009
Objectives-This study aimed to illuminate adult's experienced quality of life in newly-debuted epilepsy and to test the American instrument Quality of Life Index (QLI) for the first time on an epilepsy population. A second aim was to find appropriate questions to measure patient perceptions in epilepsy. Material and methods-All persons 18-65 fulfilling criteria (n=41) and diagnosed during a 15-month period at 2 Swedish hospitals, answered questionnaires (n = 37/41) on quality of life and perceptions of epilepsy. Results-Patients experienced the highest quality in the "Family" domain and the lowest in the "Psychological/ spiritual". Significant correlations were found between quality of life and experienced change of life situation, own perceptions of epilepsy, seizure frequency after diagnosis, gender and side effects from antiepileptic drugs. The QLI was well applicable on people with epilepsy. Conclusions-Data indicates that debut of epilepsy has an evident impact on quality of life and a more extensive study is required.
QUALITY OF LIFE OF ADULTS WITH EPILEPSY: A DESCRIPTIVE ANALYSIS (Atena Editora)
QUALITY OF LIFE OF ADULTS WITH EPILEPSY: A DESCRIPTIVE ANALYSIS (Atena Editora), 2024
INTRODUCTION: Epilepsy is the most prevalent chronic neurological disease in the world. Treatment is initially pharmacological through anti-epileptic drugs, which include anticonvulsants. The disease negatively impacts quality of life (QoL), and there are standardized scales to measure QoL in Epilepsy, such as QOLIE-31. However, the concept of quality of life is broad and it is necessary to objectively assess which areas of well-being are most impacted by the disease. OBJECTIVES: to describe the quality of life of patients with epilepsy under clinical treatment. METHOD: descriptive study, carried out through review of medical records and application of the internationally validated QOLIE-31 questionnaire. It took place from June 2021 to June 2022 in patients over 18 years of age diagnosed with epilepsy. RESULTS: Seventeen patients participated in the study, 10 men (58.8%) and 7 women, of different ages (the youngest in the 18-29 age group, and the oldest over 70 years old). The responses to the questionnaire were interpreted using the QOLIE-31 formula, which transformed the subjective responses into scores from 0 (worst QLV) to 100 (best possible QLV), divided into 7 parameters - sociability, calmness during seizures, energy, general quality of life, cognitive function, emotional well-being and adaptation to medication. Each parameter evaluated in the questionnaire had its mean, standard deviation, minimum, maximum and median calculated. DISCUSSION: the means of the 7 QOLIE-31 scores demonstrate that the factor with the worst influence on the quality of life of patients with epilepsy is the lack of calmness in having seizures - which is the result of social stigma, insecurity about getting hurt and constant fear of having seizures. The best factor evaluated was the general quality of life, which covered responses that did not depend exclusively on epilepsy. Thus, it can be seen that despite the disease, the patient can present well-being in other areas of life. The other areas evaluated obtained intermediate scores, with averages ranging from 59.5 to 65.4 out of 100 possible points. CONCLUSION: the lack of tranquility in having seizures is the worst factor in the QoL of the patient with epilepsy. The care team must address this fear during consultations, in order to train the patient on how to act in the event of a seizure and thus reduce the negative impact of seizures on their QoL.
Quality of life and the self-perception impact of epilepsy in three different epilepsy types
Journal of Epilepsy and Clinical Neurophysiology, 2007
Purpose: This study aimed to evaluate the quality of life (QOL) and verify the domains of greater impact in patients with focal and generalized epilepsies. Methods: The sample, composed by 57 subjects from Hospital São Paulo da Universidade Federal de São Paulo, was divided into 3 groups, temporal lobe epilepsies (TLE), extra-temporal epilepsies (Extra-TLE) and idiopathic generalized epilepsy (IGE). They answered a preliminary self-reported questionnaire to identify the perception of the most impaired aspects in their lives. The QOL was evaluated through the validated Brazilian version of the Quality of Life Epilepsy Inventory 31 (QOLIE-31). The correlation of the QOLIE-31 domains with epilepsy duration and seizure frequency was defined by dispersion graphics and also Pearson's and Spearman's correlation. Results: The most frequently identified impact of epilepsy was related to interpersonal, familial and social relationships mentioned by 13 (22.81%) patients. The seizure frequency per patient in Extra-TLE group was significantly greater (p = 0.007) than in the other groups. The Cognition Functioning scores were lower for the Extra-TLE group (38.4) when compared with TLE (52.6) and IGE (62.6) (p = 0.01). The correlation between epilepsy duration and QOLIE-31 domains did not demonstrate statistical significance; however, seizure frequency was correlated with Seizures Worry (p = 0.0463, α = 0.05) and Medication Effects (p = 0.0476, α = 0.05) domains. Conclusions: 1) Interpersonal, familial, and social relationships were the dimension which most impacted daily life; 2) Cognition domain in Extra-TLE group showed the worst scores; 3) QOL scores were similar in the three groups for the majority of the QOLIE-31 domains; 4) The seizure frequency in the Extra-TLE group was significantly greater; 5) Seizure frequency was associated with worse QOLIE-31 scores in the domains Seizure Worry and Medication Effects.
Social Functioning, Psychological Functioning, and Quality of Life in Epilepsy
Epilepsia, 2002
Purpose: Part of our research intended to explain "Quality of Life" (QoL) differences between people with epilepsy. To this end, a series of already existing generic and disease-specific health status measures were used. In this study, they were considered as determinants of people's QoL, whereas QoL itself was conceived as a general "value judgment" about one's life.
Is it worth it, or possible, to measure what matters to patients with epilepsy and their caregivers?
Epilepsy & behavior : E&B, 2017
The objective of this study was to collect perspectives, ideas, and values of people affected by epilepsy and their carer to include them in new research in this area. This is a semiquantitative study analyzing needs, emotions, and medical issues emerging from focus groups with patients and carers divided in three severity levels of disease. The participants were 25 patients and 36 carers attending outpatients' service of tertiary epilepsy center in Umbria, Italy. Assistance was the need expressed by more than 40% of the participants followed by experience-sharing, knowledge, control, clarity, and security. The only significant effect in logistic regression analysis after adjusting for severity was the patients' expressed need for "experience-sharing" more than their carers (OR 7.29, 95%CI: 1.76-30.18). Hope was the emotion expressed by more than 50% of the participants, followed by anger, fear, and resignation. After adjusting for severity, carers were more likely...