ABSTRACT
The formal assessment of quality of life in epilepsy has a short history, through it has long been a concern to clinicians in everyday clinical routine. However, the measurement of quality of life has only recently been considered fruitful and feasible. According to Hermann (1995), the assessment of health-related quality of life in epilepsy has evolved through three phases. The first phase emphasised measuring clinical features of epilepsy in terms of cognitive function and intelligence (e.g., Fetterman and Barnes, 1932; Matthews and Klove, 1967; Dikmen et al., 1975; Dikmen and Matthews, 1977; Seidenberg et al., 1981). Behavioural and emotional correlates of epilepsy were also investigated (Guerrant et al., 1962; Hermann and Whitman, 1984; Whitman and Hermann, 1986). In this phase, researchers were concerned with the phenomenology of this chronic neurological condition rather than with patients' ability to adjust to the disease. In the second phase, the need to develop epilepsy-related psychological instruments became apparent. Two different approaches can be distinguished (Hermann, 1995). One approach was to design self-report inventories for patients to assess the psychosocial consequences thought to be particularly associated with epilepsy, as in the ‘Washington Psychosocial Seizure Inventory’ (WPSI; Dodrill et al., 1980) and the ‘Social Effects Scale’ (Chaplin et al., 1990). The other approach involved developing scales referring to more specific problems or concerns in epilepsy, like fear of seizures (Mittan and Locke, 1982; Mittan, 1986; Goldstein et al., 1990) or perceived stigma (Ryan et al., 1980). The third phase is characterised by an increased focus on developing disease-specific instruments and on applying concepts from health-care research. This has led to a new generation of instruments focusing on wider quality of life (QoL) issues.
