Abstracts

Rationale: Satisfaction with epilepsy care is related to more than simply the delivery of management and services. It is related to expectations, attitudes, disease course, and many other factors. Our aim was to describe the current literature surrounding the measurement of patient satisfaction with epilepsy care. Methods: Medline, PsychINFO, CINAHL, Cochrane Central Register of Controlled Trials, and Embase were searched using sub-headings and keywords related to patient satisfaction, client/consumer satisfaction, and treatment outcomes. Two independent reviewers screened abstracts and full-text and abstracted data from eligible studies. Included studies measured satisfaction with epilepsy care, were original research, and described how satisfaction was assessed. Analyses were carried out to 1) assess the purpose and sample characteristics, 2) summarize satisfaction scale development and content, and 3) assess reported outcomes. Results: Of 6368 abstracts identified by the search, 125 were reviewed in full-text with 28 studies meeting all eligibility criteria. The median number of patients included in the studies was 143 (range: 18-1275). Assessments were primarily completed in adult patients and satisfaction in children was measured using parental responses. All studies used some form of parent, patient or physician self-report. Eight studies used a previously published scale to measure satisfaction, with two being specific to epilepsy. Satisfaction domains can be broadly categorized into disease course, communication/information, access to care, and physician competence. Studies conflicted in whether patients were more satisfied with specialist or general practitioner (GP) care. Four reported patients preferring GP care, while 10 studies reported preference with specialist care. Most (9/13) studies addressing information provision reported high levels of patient satisfaction, except for information related to medication side effects. However, one study found that 90% of respondents wanted more information about epilepsy, and only 20% felt they were given enough information on medication side-effects. Twelve studies assessed patient physician communication and most people were satisfied with the level of communication. In one study, 78.2% felt that epilepsy was explained adequately and adequate information was provided. However, in one study 48% of patients describing their care as excellent or good believed that they did not receive enough information from their specialist, though 81% felt that their doctor knew enough about epilepsy. Conclusions: Though measures of satisfaction with epilepsy-care exist they have not been extensively validated nor do they contain many of the important domains identified by this review. It is also unclear whether epilepsy-specific scales are superior to generic satisfaction scales in persons with epilepsy. Satisfaction is a patient-centered concept, and it is important to ensure this perspective is maintained in any scale employed in epilepsy research.