This study used data from electronic medical records to assess the extent to which patients with epilepsy receive processes of epilepsy care identified as QI's designed for use in primary and general neurology care. We were able to reliably assess the extent to which recommended care was documented in patient records. However findings for several indicators where fewer than 5% of the sample received recommended aspects of care suggest additional evaluation of those indicators or data sources is needed.
Consistent with studies examining QI concordant care in other chronic diseases, less than half of all possible care processes were completed [
21]. There was wide variation in the extent to which all recommended processes of care were provided, with Aspects of Care Unique to Women having the lowest rates of concordance.
Our data provide limited support for our hypothesis that individuals receiving shared care have better quality of care than individuals receiving only primary care or only neurology subspecialty care. The only QI's for which there were significant differences between patients receiving neurology care and those shared care was QI20 which suggests that persons with epilepsy should receive an annual depression assessment. Our data do not indicate who conducted the depression assessment. It is possible that the neurologist was more likely to attend to these items immediately for a patient that would be seen only once for referral, than the more complex patients with competing demands who were seen continuously in neurology settings [
22]. The more complex patients who were seen exclusively in neurology settings likely had acute issues associated with their seizures that required immediate attention, leaving little or no time at the end of an office visit to address chronic disease management issues. Alternatively, these chronic disease management issues may have also been addressed by the neurologist but not documented due to the intensive documentation required to address more acute seizure care.
Further examination of the aggregate measures where there is more power to detect differences between individuals receiving shared vs. primary or neurology care only, our analysis revealed that there was a significant difference between shared care and neurology only care only for chronic disease management.
Shared care has been examined in a variety of contexts with mixed results. A number of studies have found no difference in quality for patients in shared care compared to those in specialty care exclusively [
23,
24]. Rosendal and colleagues found that individuals with hip fracture and receiving shared care had more home care after discharge, and lower scores on the short version of the Sickness Impact Profile indicating improved recovery [
25]. Pugh and colleagues found that patients with diabetes were more likely to receive guideline concordant diabetes medications if they received care from both primary and specialty care compared to primary care or specialty care exclusively [
26].
Our analysis suggests that, for epilepsy, QI's associated with types of care that are more technical in nature (e.g., QI 2, 7, 15, 18) tended to have higher rates of concordance, while those associated with discussion, patient education, and chronic disease management (e.g., QI 5, 8, 16) tended to have lower rates of concordance. It is possible that these aspects of patient care that are more interpersonally oriented were actually performed, but not documented. However, documentation of these aspects of care is in and of itself an indicator of quality. Because several of these interpersonally oriented items are ones included in the UK's Quality and Outcomes framework, there is broad international consensus that they are critical components of the quality of epilepsy care (e.g., particularly documenting seizure frequency and reviewing medication management). Accordingly the QUIET indicators could be used to develop electronic templates for use in documenting care for patients with epilepsy in organizations with electronic medical records (or a paper template for settings with paper records). Such a template would facilitate documentation of these important processes of care when they occur, and guide providers who do not commonly provide care for patients with epilepsy.
Beyond our hypothesis, we found that chronic disease management issues specific to women tended to have lower rates of concordance than other aspects of care. Again, it is possible that women were taking over-the-counter medications or vitamins with the recommended dose of folate and did not need a prescription. However, the drug-drug interaction between lamotrigine and oral contraceptives was not addressed in four of five eligible patients. Because the numbers of women meeting criteria was low for QI 24 women's issues should be highlighted as a concern not only for clinicians to address, but also as a concern requiring additional quality assessment.
Finally, our findings suggest that issues recently highlighted in the literature-bone health and mood disorders [
27,
28] -are being addressed for many patients with epilepsy. Approximately 62% of individuals on AEDs for two or more years received testing for Vitamin D or a DXA scan. With regard to mood disorders, 46% received recommended screening. Of those with evidence of anxiety or depression, 71% received treatment with medications or a referral to a mental health practitioner.
These findings must be interpreted in light of several limitations. First, this study was in a single medical center in which study participants appeared to have higher rates of uncontrolled seizures than estimates from the literature [
29]. The complexity of these patients may be such that competing demands for physician time make addressing less acute issues more difficult, so these findings may not reflect the quality of care provided for less complicated patients. Attempts to adjust these results for disease severity, however, did not change results since there were no significant differences in QI concordant care for those with and without continued seizures. This limited sample, from a single geographic location provides a point of reference for future studies from other geographic regions and multi-site studies with power to detect geographic variations in care that may exist.
Related to this single-site study is the fact that the total number of patients (N = 311) was relatively small, particularly after stratifying patients into groups of neurology care, shared care and primary care. The primary care group was particularly small for all groups except chronic epilepsy care. Thus, findings for the primary care group must be interpreted with caution.
Next, quality of care was assessed primarily using the electronic medical record. As described above, it is possible that interpersonal aspects of care were addressed but not documented. A number of aspects of care that are more interpersonal in nature may be better assessed using patient reported survey measures. Future studies examining the quality of epilepsy care using a broad measure such as the QUIET indicators may benefit from an approach that utilizes not only medical chart abstraction, but a targeted survey that provides a second assessment of patient reported receipt of care which allows one to triangulate data to assess the care received by patients. Moreover, such a survey would benefit by adding quality of life measures, and other potential outcomes that may be linked to higher quality care such as employment, relationship status, and education.
We further found that scoring compound QI's (e.g., 1, 8 and 16) in an all or nothing fashion may lead to loss of useful information. Adaptation and/or disaggregation of specific aspects of these QI's may be needed in future research on the quality of epilepsy care. However, our assessment of broad areas of epilepsy care (Table ) examined the proportion of possible care processes that were completed. Even in this analysis where credit was given for completing even one aspect of care for complex QI's, fewer than half of all possible processes of care were completed, suggesting room for improvement in all aspects of epilepsy care.
Finally, because these QI's were designed for use in primary or general neurology care settings, it is possible that some very important aspects of care may not be as clearly articulated. For instance we indicated numerous points where referral to a higher level of specialty care is recommended. Due to the structure of care in the US, we did not specifically identify a point in time where a patient should be referred to a tertiary epilepsy center for comprehensive evaluation. This limitation should be addressed by future versions of this measure.
1,2 Dan R Berlowitz,3,4 Jaya K Rao,5 Gabriel Shapiro,4,6 Ruzan Avetisyan,4 Amresh Hanchate,7 Kelli Jarrett,4 Jeffrey Tabares,1 and Lewis E Kazis3,8
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