The subjective handicap of epilepsy A new approach to measuring treatment outcome (original) (raw)
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Assessment of Quality of Life in People with Epilepsy: Some Practical Implications
Epilepsia, 2001
Growing recognition of the need to assess the impact of epilepsy on psychosocial functioning has led to a number of initiatives to quantify quality of life (QOL) in patients with this condition. To understand the impact of epilepsy and its treatment, physical, social, neuropsychological, and psychological functioning aspects must be considered. It also is apparent from previous research work that measures of QOL should be comprehensive enough to address the question under consideration, but also simple and as brief as possible. A number of QOL measures for assessing the impact of epilepsy and its treatment exist, such as the Washington Psychosocial Seizure Inventory, the Social Effects Scale, the Epilepsy Surgery Inventory, the Quality of Life in Epilepsy (QOLIE) questionnaire, and the Liverpool QOL Battery. These measures have in most cases been shown to be reliable, valid, and sensitive to change, although at the current stage of development, some are better validated than others. It is generally agreed that the best approach is to use a standard generic instrument with diseasespecific additions. Selection of a measure already in existence is recommended, as the process of producing a new measure is costly in terms of both resources and time. Some consideration also needs to be given to factors such as the process of administration (e.g., self-completion or administration at interview) or the timing of data collection. Then questions such as the cross-cultural applicability of QOL measures and the real relevance of the changes remain to be answered. It is hoped that, over the next few years, significant progress will be made in addressing these issues.
Measuring the impact of epilepsy: the development of a novel scale
Epilepsy Research, 1993
The impact of a chronic illness is experienced not only through its physical symptoms, but also as a result of its effect on psychosocial functioning. In the case of an illness such as epiiepsy, where the physical manifestations are transient, the psychosocial consequences may, with time, come to be of greater concern. We have been involved in developing a quality of life model for epilepsy. As part of the refinement of the initial model, we have devised a novel scale to measure the impact of the condition on a number of different aspects of daily life. The scale was administered to 75 patients attending an epilepsy out-patient clinic. Initial analysis of its psychometric properties is encouraging, although the inclusion of an item relating to employment reduced the scale's reliability. As a result, the wording of the existing item has been amended and an additional item has been incorporated. We hope the scale will be useful in investigations of treatment for epilepsy and of its psychosocial aspects.
Epilepsy & Behavior, 2013
Patient-reported outcome measures (PROMs) are increasingly used in epilepsy. Epilepsy-specific instruments enable clinicians to gain insight into patients' health-related quality of life (HRQoL) but do not allow comparison between conditions and do not reflect subjective well-being (SWB). Using the World Health Organization Quality-of-Life Questionnaire-Brief (WHOQOL-Bref), a short generic PROM, we compared the HRQoL in a cohort of men with epilepsy (MWE) recruited from the epilepsy clinic and via the website of a large UK epilepsy charity, with seven other groups with chronic diseases. Multiple linear regression showed that mood was the most important independent predictor of the WHOQOL-Bref score. The sample, however, rated their global quality of life as highly as the UK control group, and 38% reported life 'very' or 'extremely' meaningful, and 4% enjoyed life 'very much' or 'extremely'. Because of its structure, the WHOQOL-Bref gives clinicians an indication not only of HRQoL but also of SWB, a broader construct. Our study suggests that the narrow focus of epilepsy-specific HRQoL questionnaires may give only a partial picture of a patient's quality of life. In addition, by concentrating on the negative aspects of life with epilepsy, these instruments may distract both the patient and the clinician from what is good about life, denying the patient the benefits of 'positive psychology' and the clinician the opportunity to build the patient's resilience.
Assessing the psychosocial consequences of epilepsy: a community-based study
The British journal of general practice : the journal of the Royal College of General Practitioners, 1999
Few studies have measured, using validated scales, the psychosocial handicap of epilepsy in a general practice setting. To assess the prevalence of psychosocial problems associated with epilepsy. A survey was undertaken of 309 subjects, with one or more non-febrile epileptic seizures, drawn from two general practices in the United Kingdom (UK). The outcome measures were the Subjective Handicap of Epilepsy Scale (SHE), the SF-36, and the Hospital Anxiety and Depression scale (HAD). One-third of persons with active epilepsy were significantly handicapped by their condition. The severity of subjective handicap was related to seizure frequency and to the duration of remission of seizures. Between one-third and one-half of subjects scored as 'cases' on the HAD scale and on the mental health subscale of the SF-36. Only one-third of the psychiatric morbidity revealed by the questionnaires had been recognized by the general practitioner (GP). Scores on the SF-36 indicated that peopl...
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 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.
The initial development of a health-related quality of life model as an outcome measure in epilepsy
Epilepsy Research, 1993
Patients with refractory epilepsy, despite no fixed physical deficit, are often socialiy and psychologically handicapped. Currently available outcome measures for epilepsy do not adequately address these manifestations or their influence on well-being and quality of life. A patient-bard health-relate quality of life (HRQL) model for epilepsy including physical, social and psychological domains was constructed. It contains previousiy validated measures of anxiety, depression, happiness, overall mood, self-esteem, mastery, social satisfaction and general health and a specifically designed seizure severity scale with patient-and carer-based components. The psychometric properties of this model were evaluated in the context of the trial of a potential new antiepileptic drug. All the scales, except the Social Problems Questionnaire, have acceptable internal consistency (a 0.69-0.85) in this patient population. Construct validity is indicated by the ability of the scales to differentiate between groups of patients predicted to have different levels of psychosocial function. Treatment effects were detected by the patient (P= 0.017) and carers (P= 0.035) subscales of the seizure severity scale, the happiness (P= 0.003) and the mastery (P= 0.003) scales. Despite obvious deficiencies preliminary analyses are encouraging. This model provides a framework for investigating the complex interaction between the physical, social and psychological manifestations of epilepsy. The model has potential as an outcome measure for use in longitudinal studies and as a measure of disability for use in cross-sectional studies designed to compare quality of life in different populations of people with epilepsy.
The Personal Impact of Epilepsy Scale (PIES)
Epilepsy & behavior : E&B, 2015
The impact of epilepsy is manifest by effects related to seizures and side effects of therapy and comorbidities such as depression. This report describes the development of a brief patient-reported outcome (PRO) instrument, the Personal Impact of Epilepsy Scale (PIES), to measure the influence of epilepsy overall and in each of these domains. Instrument development followed standard procedures and an FDA Guidance. People with epilepsy were surveyed with open-ended questions to derive major themes of their concerns, resulting in 4 key areas: seizures, side effects, comorbidities, and overall quality of life (QOL). A preliminary set of 152 questions was based on these themes and completed by 50 patients, age 42.7 (range: 21-71) years, concurrent with comparator instruments, including the NH Seizure Severity Scale (NHSSS), the Liverpool Adverse Events Profile (LAEP), the Quality of Life in Epilepsy (QOLIE-31) scale, the Beck Depression Inventory, and the Epilepsy Foundation Depression:...