The impact of social support on health related quality of life in persons with epilepsy

Abstract

Previous studies have found that psychosocial factors have the greatest impact on health-related quality of life (HRQOL). Social support can buffer the negative impact of stressful events and chronic health conditions. To date, no population studies have examined the association between social support and epilepsy. In the 2003 California Health Interview Survey (CHIS), four questions were used to assess social support. A set of survey weight-adjusted logistic regression analyses were conducted with self-rated health status as the outcome. In those regression models, we examined the effect of epilepsy status, social support, and their interactions, after controlling for demographics. Analyses examining the interaction between epilepsy and social support showed a significant interaction between epilepsy and “availability of someone to love you and make you feel wanted.” Once demographics were controlled for, persons without epilepsy and poor affectionate support reported fair/poor self-rated health status (odds ratio = 1.7). Persons with epilepsy and good affectionate support also reported fair/poor self-rated health status (odds ratio = 3.3). Persons with epilepsy and poor affectionate support were the most likely to report fair/poor self-rated health status (odds ratio = 9.1). Persons with epilepsy need encouragement to actively seek and sustain supportive personal relationships that may help improve their quality of life.

Introduction

Epilepsy is one of the most common neurological problems, affecting between 1% and 2% of the population. Although seizure freedom is the ultimate treatment goal, factors other than disease severity may have a significant influence on quality of life. Previous studies have found that psychosocial factors have the greatest impact on health-related quality of life (HRQOL), whereas clinical variables (age at onset, seizure frequency and side effects of antiepileptic drugs) did not significantly impact patients’ self ratings of HRQOL [1]. Although epilepsy severity is an important predictor of quality of life, some persons with epilepsy (PWE) are able to proceed with life relatively unencumbered despite uncontrolled seizures. It has been suggested previously that the persons most debilitated by epilepsy are not those with the highest seizure rates, but rather those who lack social support [2]. Higher education and occupational attainment are thought to modify the quality-of-life trajectory in epilepsy [3]. However, population studies from the United States show that persons with a history of epilepsy report lower educational attainment, lower household income, and poorer health status compared with those without epilepsy [4], [5].

Social support has been defined as “the commitment, caring advice and aid provided in personal relationships” [6]. Social support, especially physical and emotional comfort given by an intimate partner or from family and close friends, is thought to buffer the negative impact of stressful events, ongoing life strains, and chronic health conditions [7]. Social support serves several major functions: emotional support (expression of positive affect, empathetic understanding, and encouragement of expressions of feelings), informational support (advice and guidance with problem solving), instrumental support (providing tangible resources or financial support and practical help with activities of daily living), appraisal (comparing oneself with others), social companionship (spending of time with others in leisure or recreational activities), and affectionate support (expressions of love and affection) [8], [9].

Chronic illness requires daily readjustments that repeatedly interfere with day-to-day life and role-related activities (work, school, etc.). The positive effects of support or negative effects of a lack of support may also directly influence health [10]. Persons with low social support are more likely to suffer from various psychological and physical aliments [11]. Previous epidemiological studies have suggested that poor social support is a major risk factor for morbidity and mortality, with statistical effect sizes comparable to those of established risk factors such as cigarette smoking, hypertension, high cholesterol, obesity, and physical activity [12].

One epilepsy study found that 90% of the variance for self-rated HRQOL was explained by a combination of disease severity, epilepsy self-efficacy, social support, and locus of control [13]. Most importantly, social support was a mediator between disease severity and mastery, defined as patients’ general belief that they can control the course of life despite their epilepsy [13]. The more severe people perceive their disease to be, the less social support they will report receiving. The authors concluded that as social support decreases, HRQOL decreases. However, as social support increases, the sense of mastery increases, and hence, the person’s ability to cope with the limitations of their disease improves.

Previous studies of social support in PWE found that social support networks were restricted to family, neighbors, and health care providers [11]. In a recent prospective study, social support was a significant predictor of depressive symptoms at baseline, 3 months, and 6 months [14]. A small study comparing coping strategies in persons with drug-resistant epilepsy with seizure-free persons found no difference in the employment of social support strategies between the two groups [15]. A recent general population study examined the effects of social and emotional support on HRQOL [16]. However, no previous population studies have analyzed the association between social support and epilepsy. The goal of this study was to examine the effects of social support on HRQOL in persons with a history of epilepsy. Based on previous research, we hypothesized that PWE would be more likely to rate their levels of social support as poor. We hypothesized that this would result in poor HRQOL ratings compared with those for persons without epilepsy.