Abstracts

Rationale: Effective management of epilepsy requires partnership between the patient and professionals who support their management efforts. This study involved health care providers with and without experience living with epilepsy and elicited their perspectives regarding challenges facing patients with the condition. Methods: 101 clinical, academic, and human services thought leaders providing care to people with epilepsy were interviewed by telephone. Interviews comprised twenty questions regarding significant challenges people with epilepsy face in managing their condition. Interviews were audio recorded, transcribed, and coded into thematic groups using an iterative process within NVivo 8. Prevalent themes were examined using a chi-squared test of homogeneity to compare proportions of respondents by profession type and personal experience with epilepsy. Results: Respondents were clinicians (41%), social service providers (41%), researchers (16%), other (3%). One-third of respondents (n=34) have epilepsy themselves or have a close family member with the condition. Researchers (88%) and social service professionals (56%) saw access to and quality of clinical care as the most daunting factor facing epilepsy patients. Clinicians reported less often that this was the greatest management challenge (22%, p<0.0001) and clinicians most often cited psychological effects associated with the condition (32%) as the most important problem. Affording medicines was not seen as a great challenge by most clinicians or researchers, but was by a quarter of social service professionals (27%, p<0.018). Virtually no person with personal experience with epilepsy (3%) saw stigma and lack of public understanding as a great challenge to people with the condition although over a quarter (27%) of the respondents without personal experience said this was a great challenge (p<0.0057). Respondents with personal experience with epilepsy were much more likely to report that affording medicines was a challenge (27%, p<0.0625), and for them, cognitive difficulties were considered a challenge (17%). When asked about the most important thing a person with epilepsy needs to be able to do to manage the disorder, responses differed by profession type for only one response: medication compliance. Medication compliance was the most frequently mentioned response from clinicians, compared to other professionals (p<0.05). Researchers and social service providers most frequently cited the need to understand their own condition as the most important. Responses did not vary significantly by whether the respondent had personal experience with epilepsy. Conclusions: Professionals need to recognize that their perspectives may be influenced by their disciplinary orientation and personal experience. Services and programs that accommodate different perspectives and are based on a broader picture of epilepsy control may provide more assistance for people trying to manage the condition.