Abstracts

Rationale: Epilepsy management issues for patients include poor knowledge about the disorder, treatment, and consequences; seizure frequency and medical adherence; and psychosocial aspects (anxiety, depression, social stigma, cognition, and family adjustment). Issues are often reported separately in studies by either health care professionals or patients, but rarely by both sources at the same time, using a similar metric. Methodological challenges in epilepsy self-management trials are apparent: lack of power estimates; recruitment issues; high dropout; and questions of engagement in online programs where attendance behavior is difficult to monitor. The challenge of participant engagement in research trials is salient. To clarify the relevance of patient-centered planning in epilepsy self-management programs, epilepsy patients and clinicians were surveyed regarding self-management problem areas and program design preferences (leadership, session format, session approach/content). Methods: Respondents came from two populations: patients and providers. The patient sample was adults age 18 and older with chronic epilepsy (n=165). The provider sample was medical and allied health workers who treat people with epilepsy in specialty epilepsy centers (n = 20). Both groups completed a mail survey that was similar, but not identical. The patients rated their life problems related to work; independent living; socializing; epilepsy; emotions; cognition; health and well-being; and medical care, and rank ordered or otherwise selected preferences for a self-management program (format, content, leadership, duration). The providers rated the same life problem areas based on their typical patients over the past 6 months. For the program items, they responded based on their average patient. Results: Results indicated two patient subgroups: one with "epilepsy-only" and one with "epilepsy-plus" marked by probable depression and/or cognitive problems. The subgroups differed in responses to problem areas. Their responses were examined separately against provider responses. Providers rated patient problems more severe in all domains: Work, Independent Living, Socializing, Life with Epilepsy, Mood, Cognition, General Health and Well-Being, and Medical Care (all p < 0.001). Pairwise analyses indicated providers rated all of the eight domains higher (worse) than the "epilepsy-only" subgroup (all p < 0.001). Providers rated four of eight domains higher (worse) than the more impaired "epilepsy-plus" subgroup: Work (p = 0.035), Independent Living (p = 0.005), Life with Epilepsy (p = 0.029), and Medical Care (p = 0.027). With the Bonferroni correction, only the Independent Living comparison was significant. Although differences were seen between groups regarding program preferences, these were largely not significant after correcting for multiple comparisons. Conclusions: Findings demonstrate dissonance between patient and clinician perceptions of self-management problem areas. This has implications for engaging patients in self-management programs. Efforts to address problems patients endorse, in a context they prefer, should be made.