Abstract
Epilepsy is an unpredictable, often chronic and debilitating disorder. It affects more than 50 million individuals and their families worldwide at some point of lives, thus constituting a major, universal, public health issue. 10-20% of patients with epileptic seizures also suffer from psychogenic non epileptic seizures. Quality of life has been repeatedly found to be significantly affected both in patients with epileptic and psychogenic non-epileptic seizures. Yet, there is no consensus in the literature about the determinants of patient quality of life. In Greece, this data is even sparser and transcultural studies are lacking. Additionally, contrary to other chronic medical and neurologic disorders, the disease burden and quality of life of their caregivers has not been adequately studied, particularly in the adult population.In this thesis, we attempt to fill in this research gap by examining the following four points:•The determinants that affect patient quality of life and caregi ...
Epilepsy is an unpredictable, often chronic and debilitating disorder. It affects more than 50 million individuals and their families worldwide at some point of lives, thus constituting a major, universal, public health issue. 10-20% of patients with epileptic seizures also suffer from psychogenic non epileptic seizures. Quality of life has been repeatedly found to be significantly affected both in patients with epileptic and psychogenic non-epileptic seizures. Yet, there is no consensus in the literature about the determinants of patient quality of life. In Greece, this data is even sparser and transcultural studies are lacking. Additionally, contrary to other chronic medical and neurologic disorders, the disease burden and quality of life of their caregivers has not been adequately studied, particularly in the adult population.In this thesis, we attempt to fill in this research gap by examining the following four points:•The determinants that affect patient quality of life and caregiver burden in epilepsy internationally•The determinants that affect patient quality of life and caregiver burden in epilepsy nationally, as well as cross-cultural differences in these domains between Greece and the U.S.A.•Differences in patient and caregiver quality of life in epileptic seizures compared to psychogenic non epileptic seizures•The effect of epilepsy surgery on patient and caregiver burden and quality of life.The study is a cross-sectional study conducted between September 2009 and June 2011 at Democritus University of Thrace (DUT), Massachusetts General Hospital (MGH) and Boston University Medical Center (BUMC). At DUT, PWE with their accompanying caregivers were recruited at the outpatient epilepsy clinic, while at MGH and BUMC, recruitment for both patients and caregivers took place in the Epilepsy Monitoring Unit (EMU). Recruitment of patients with psychogenic non-epileptic seizures along with their caregivers was performed only at MGH and BUMC, while recruitment of PWE who underwent epilepsy surgery along with their caregivers was performed only at MGH, given the lack of an EMU or an organized epilepsy surgery program at DUT. That recruitment process yielded a total of 208 patients and 97 caregivers in all sites. In all locations, patients completed questionnaires providing demographic (age, gender, race, religion, employment, education, living situation and marital status) and epilepsy related (age of epilepsy onset, epilepsy duration in years, average number of seizures per month in the past year, number of antiepileptic drugs, self-reported compliance) information. Their cognitive and psychiatric status was evaluated by administering the MoCa and the Beck’s Depression and Anxiety inventories respectively. Sleep was assessed by applying with Epworth Sleepiness Scale. Patient quality of life was evaluated by completing the QOLIE-31 instrument. The information collected was cross-validated with medical records review. Additionally, various paraclinical (e.g. laboratory, electroencephalographic and radiological) data were collected as part of standard of care. Caregivers accompanying the patients also completed questionnaires providing demographic information (age, gender, race, religion, employment, education, marital status, cohabitation and time spent for patient care in hours per week). Given the lack of a disease specific questionnaire to assess their burden, the Zarit caregiver burden inventory was used. Caregiver health-related quality of life was assessed by administering the second version of the SF-36 generic questionnaire (SF36v2) (Ware and Gandek 1998), available only for US caregivers. The study was approved by the institutional review boards. Analysis was performed predominantly in SAS 9,3 (North Carolina). Summary scores were created for all the aforementioned variables and descriptive statistics were used. Comparisons were performed using t-test or their non parametric equivalent for continuous variables and Chi-square for categorical variables. Associations were examined initially using univariate regression analysis methods to ascertain important variables to incorporate into subsequent multivariate regression analysis models for each outcome of interest. This study yields the following findings: •Regardless of nationality, depression is the strongest determinant of patient quality of life in epilepsy. Caregiver demographic factors do not appear to determine patient quality of life.•Regardless of nationality, there is modest burden to caregivers in epilepsy.•This burden is comparable to other, less prevalent, chronic neurological conditions, although it has been under investigated.•Regardless of nationality, time allocated to patient care sustains as an important burden predictor across different cultures. •The observed heterogeneity of additional determinants of patient quality of life and caregiver burden may be related to transcultural differences.•The toll to the stakeholders of epilepsy care is significant both for their physical and even more for their psychological well-being. •Caregiver quality of life in psychogenic non epileptic seizures is comparable to that in epileptic seizures. •Caregiver burden emerges as a consistent determinant of caregiver quality of life both in epileptic seizures and psychogenic non epileptic seizures.•Epilepsy surgery, when successful, can improve not only patient but also caregiver quality of life, particularly in the emotional realm. The main advantage of this thesis is the detailed study of a host of potential determinants of patient quality of life and caregiver burden, and the focus on the caregiver in epilepsy from multiple angles. On the other hand, we should acknowledge the cross-sectional nature of the study, the possibility of recall and selection biases, the lack of control groups for the majority of the aims, the heterogeneity of our sample, and, perhaps, the limited generalizability of our findings to the community.Despite the limitations, taken together these results indicate that caring both for epileptic and psychogenic non epileptic seizure patients is burdensome across countries, and impacts both caregiver and patient quality of life. Future research should aim to confirm or refute these preliminary findings, at a larger scale and across more countries and settings, including ideally also other family members beyond the primary caregiver as well as control groups from other chronic medical conditions, using validated and disease specific caregiver-focused questionnaires and applying a longitudinal design that extends into interventional studies for the family. Future clinical trials of treatments in epilepsy should consider incorporating the well-being of the whole family as a surrogate endpoint. Advocacy groups should promote caregiver awareness and funding agencies should incorporate caregiver research into their agenda. In the interim, health care professionals are encouraged to adopt a family-centered approach to buffer against the burden in all stakeholders of epilepsy and improve their commonly impoverished quality of life. The findings presented herewith reinforce the significance of acknowledging the caregiver as a key player and at times, an invisible patient in epilepsy, and provide a common framework for clinical practice, research and social policy.
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