Indian Write- Ups
| Paediatrics |
| Caring for the Quality-of-Life in Epilepsy Patients Dr. Vinit Suri, Sr. Consultant Neurologist, Dept. of Neurology, Indraprastha Apollo Hospitals, New Delhi. |
Childhood epilepsy is among the most common neurological conditions in the developing years. Population-based studies report prevalence rates of 3.6 to 4.2 per 1,000 for children in developed countries and it is believed to be approximately double these rates in developing countries. While many people manage to achieve good control of their seizures, yet each year, about 40% of epilepsy patients live with persistent seizures and are left to cope with the consequences of both the seizures and the therapy.
Unfortunately, despite the well-accepted fact that these children are at a high risk for poor psychosocial outcomes, even without experiencing co-morbidities, very little attention is paid by the practicing physician on the impact of epilepsy on various aspects of the child’s life, e.g. school career, family holidays and personal relationships. Therefore, the goal of management of children with epilepsy should be to enable the child and the family not only to lead a life as free as possible from the medical complications of epilepsy but also care for the psychosocial impact of the disease.1 The Psychological Component Epileptic seizures at times, characterized by sudden loss of consciousness, bodily distortion, injuries, unusual and often frightening psychological experiences as well as urinary and bowel incontinence, are bound to deeply impact not only on the victim but also on the onlookers, fostering a vicious cycle of fear, social stigma, finger pointing, specially in those who are less informed about the condition. In addition, because of its unpredictability, the threat of seizure recurrence hangs like the proverbial Sword of Damocles over the patient and his family. The goal of management of children with epilepsy should be to enable the child and the family not only to lead a life as free as possible from the medical complications of epilepsy but also care for the psychosocial impact of the disease. Subjects experience significant adverse effects of therapy, particularly cognitive effects. In addition, fear, limitations on lifestyle and stigma are among the worst parts of having epilepsy. Epilepsy per se has a considerable negative impact on the quality-of-life and in order to optimize the outcome by developing more appropriate interventions, there is a need to measure health-related quality-of-life. Psychosocial problems may result directly from the epilepsy or its treatment or indirectly from the consequences of living with a seizure disorder. Quality-of-Life in Epilepsy Many factors influence the quality-of-life (QoL) of people with epilepsy. These include:
Clearly, epilepsy per se has a considerable negative impact on the QoL and in order to optimize outcomes by developing more appropriate interventions, there is a need to measure health-related quality-of-life (HRQL). Measuring HRQL in Childhood Epilepsy A number of epilepsy-specific HRQL scales for children have been developed with the aim to include and measure accurately the impact and burden of epilepsy. Their target populations, details of the origin of the items, and psychometric properties vary significantly. Their strengths and weaknesses will be identified more clearly through their continued use in the clinical setting and in research studies. Only a few studies to date have utilized these or generic HRQL measures to assess the HRQL of specific population with epilepsy. Future research needs to develop theory-driven models of HRQL and identify measurable factors that have important correlations with outcomes.1 There are 2 popular, but distinct, approaches to the measurement of HRQL. One approach involves the application of ‘generic’ HRQL tools, that provide a broad measure of HRQL irrespective of the underling disorder. Both the Child Health Questionnaire (CHQ) and the ‘PedsQL’ are gaining recognition as child focused, broad-based health profiles. A potential limitation of these tools is that theoretically they might lack the sensitivity to detect subtle aspects of specific-conditions or disorders in a way that provides meaningful information to patients and professionals, although the empirical evidence in this regard is contradictory. 'Disease or condition-specific' HRQL instruments are created to assess characteristics of a particular condition. As such, they are generally seen to be more relevant and sensitive to the nuances of the disorder. On the other hand, they provide data that address a narrower range of issues than generic instruments, and it is usually difficult or impossible to relate data from one disease-specific measure to another. Clinicians need to familiarize themselves with outcome measures to be able to evaluate them, and use them routinely in their day-to-day practice. What can be done? Of prime importance while caring for the epileptic patient is a sympathetic approach with an intention to provide relief from not only seizures but also to other equally debilitating associated conditions. The doctor needs to provide proper counseling and education regarding all facets of management. Typically, initial patient and family education is not provided until many years after diagnosis. By then, psychosocial problems may have already developed. Ideally, education should be provided at the time of diagnosis and as patients encounter new problems or enter new life stages. In addition, the general public also needs to be sensitized to their problems to allow for better acceptability in the community. Conclusion Despite the fact that many famous and successful people throughout history have had epilepsy, misunderstanding and prejudice about this common neurological disorder remains prevalent. Children who suffer from childhood seizure disorders, especially epilepsy, have various potential psychiatric issues and concerns that the treating physician and psychiatric consultant should consider. These children are at increased risk of adjustment reactions, anxiety and mood disorder, ADHD, learning difficulties, and familial and social stress. Successful medical management can relieve the burden of patients and their families, and this can in turn influence how they cope with medical treatment. It is critical that healthcare professionals recognize the spectrum of issues facing the patients with epilepsy and are familiar with the available resources. References
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