Social Functioning, Psychological Functioning, and Quality of Life in Epilepsy

Abstract

Summary: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.Methods: From the records of four outpatient clinics, 210 persons with epilepsy were randomly selected. During their visit to the outpatient clinic, they completed a questionnaire assessing, among other things, health perceptions and social and psychological functioning. Additional information about their medical and psychosocial status was gathered from the patient files. Data were analysed by using a hierarchical regression analysis.Results: In decreasing order of importance, "psychological distress," "loneliness," "adjustment and coping," and "stigma perception" appeared to contribute most significantly to the outcome QoL as judged by the patients themselves, regardless of their physical status. In the final model, none of the clinical variables (onset, seizure frequency, side effects of antiepileptic drugs) contributed significantly anymore to the patients' "quality-of-life judgement." Apparently the effect of other variables such as seizure frequency and health perceptions, medication and side effects, life fulfilment, self-esteem, and mastery is mediated by these variables.Conclusions: Because all of the variance in QoL of the patients was explained by the psychosocial variables included in this study, health professionals should be aware of the significance of the psychosocial functioning of the patients and the role it plays in the achievement of a good QoL. Both informal and professional support may be an adjunct to conventional treatment. In future research, this issue should be given high priority.

A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]

“…Many young people with epilepsy report feeling isolated from peers [6,14] and this can have an important developmental cost during adolescence -a period where young people typically engage as a group in behaviors associated with a level of risk as they navigate the increased levels of autonomy and independence available to them. The importance of participation in 'normal' group learning experiences and activities during adolescence offers key opportunities for personal growth, and social exclusion may be linked to later negative outcomes such as poorer quality of life (QoL) [36]. Another significant finding from the trial was that participants became self-guided learners and 'discoverers' about their own condition after the intervention was completed, as they continued to evidence increased knowledge about epilepsy at 3 and 6-month follow-up.…”

The Relative Contribution of Domains of Quality of Life to Overall Quality of Life for Different Chronic Diseases

“…The World Health Organization Quality of Life assessment (WHOQOL) group has defined QoL as 'Individuals' perception of their position in life in the context of the culture and the value system in which they live and in relation to their goals, expectations, standards and concerns' [2]. The WHOQOL definition of QoL focuses attention on the patient's perspective on QoL and assumes an evaluation of several life domains by the patient [3,4]. This definition of QoL has influenced the definitions used in many other studies [1,[4][5][6].…”

“…The WHOQOL definition of QoL focuses attention on the patient's perspective on QoL and assumes an evaluation of several life domains by the patient [3,4]. This definition of QoL has influenced the definitions used in many other studies [1,[4][5][6]. For example, Gill et al [6] refer to QoL as a 'uniquely personal perception, denoting the way that individual patients feel about their health status and/ or non-medical aspects of their lives'.…”

“…Different conceptualisations of QoL have been used, ranging from the general to the more specific [4]. General definitions refer to QoL as the perception of life in general and are conceptually different from health-related QoL, which represents health-related problems in several life domains.…”

“…Second, domains of QoL probably do not fully cover the QoL of patients. An overall judgement of QoL, on the other hand, requires patients to evaluate several life domains and to combine the weightings of these domains into a 'generic value judgement' of life in general [4]. Therefore, such an overall judgement may better reflect patients' QoL.…”