Creation and implementation of an electronic health record note for quality improvement in pediatric epilepsy: Practical considerations and lessons learned.

OBJECTIVE: To describe the development of the Pediatric Epilepsy Outcome-Informatics Project (PEOIP) at Alberta Children's Hospital (ACH), which was created to provide standardized, point-of-care data entry; near-time data analysis; and availability of outcome dashboards as a baseline on which to pursue quality improvement. METHODS: Stakeholders involved in the PEOIP met weekly to determine the most important outcomes for patients diagnosed with epilepsy, create a standardized electronic note with defined fields (patient demographics, seizure and syndrome type and frequency and specific outcomes- seizure type and frequency, adverse effects, emergency department visits, hospitalization, and care pathways for clinical decision support. These were embedded in the electronic health record from which the fields were extracted into a data display platform that provided patient- and population-level dashboards updated every 36 hours. Provider satisfaction and family experience surveys were performed to assess the impact of the standardized electronic note. RESULTS: In the last 5 years, 3,245 unique patients involving 13, 831 encounters had prospective, longitudinal, standardized epilepsy data accrued via point-of-care data entry into an electronic note as part of routine clinical care. A provider satisfaction survey of the small number of users involved indicated that the vast majority believed that the note makes documentation more efficient. A family experience survey indicated that being provided with the note was considered "valuable" or "really valuable" by 86% of respondents and facilitated communication with family members, school, and advocacy organizations. SIGNIFICANCE: The PEOIP serves as a proof of principle that information obtained as part of routine clinical care can be collected in a prospective, standardized, efficient manner and be used to construct filterable process/outcome dashboards, updated in near time (36 hours). This information will provide the necessary baseline data on which multiple of QI projects to improve meaningful outcomes for children with epilepsy will be based.

Most Children With Epilepsy Experience Postictal Phenomena, Often Preventing a Return to Normal Activities of Childhood.

BACKGROUND: After a seizure, individuals with epilepsy have reported diverse symptoms in the postictal period, especially motor and cognitive dysfunction. However, these phenomena have not been well characterized in children, and their impact on patient well-being is not understood. We hypothesized that in a subset of epilepsy patients, postictal symptoms would affect their ability to return to normal childhood activities. METHODS: To test our hypothesis, a survey-based approach was used to characterize the type, frequency, and duration, as well as the impact of these symptoms on the ability of these children to return to their normal activities. RESULTS: In this prospective study, data were analyzed from 208 patients seen in the pediatric neurology outpatient clinic at the Alberta Children's Hospital. We found that 86% (179 out of 208) of respondents reported postictal symptoms, with the most common symptom category being fatigue, sleepiness, and/or tiredness (90%; 161 of 179). The greatest impact resulted from weakness or being unable to move normally, which prevented 78% of those affected (71 of 91) from returning to normal activities after a seizure. Children who had focal seizures were more likely to experience postictal fatigue, sleepiness, or tiredness (P = 0.01; Bonferroni corrected), but no other postictal symptoms were significantly associated with a specific seizure type or epilepsy syndrome. CONCLUSIONS: The results of this study further our understanding of the frequency, type, and duration of symptoms experienced in the postictal period and how these symptoms impact children with epilepsy. It is clear that postictal phenomena often occur after epileptic seizures and have a significant impact on the lives of children with epilepsy.

Life disruption, life continuation: contrasting themes in the lives of African-American elders with advanced heart failure.

This study addresses the need for more information about how urban African-American elders experience advanced heart failure. Participants included 35 African Americans aged 60 and over with advanced heart failure, identified through records from a community hospital in Detroit, Michigan. Four focus groups (n = 13) and 22 individual interviews were conducted. We used thematic analysis to examine qualitative focus groups and interviews. Themes identified included life disruption, which encompassed the sub-themes of living scared, making sense of heart failure, and limiting activities. Resuming life was a contrasting theme involving culturally relevant coping strategies, and included the sub-themes of resiliency, spirituality, and self-care that helped patients regain and maintain a sense of self amid serious illness. Participants faced numerous challenges and invoked a variety of strategies to cope with their illness, and their stories of struggles, hardship, and resilience can serve as a model for others struggling with advanced illness.

The lived experience of heart failure at the end of life: a systematic literature review.

The growing number of older adults with heart failure (HF) suggests the need for more information about how people with this condition experience their illness and strategies for coping with this condition. To address this need, the authors conducted a systematic review of the literature and an in-depth, thematic analysis of qualitative first-person accounts on the lived experience of HF. Results suggest that people with HF face many challenges, including those associated with the formal health care system, life disruption, social isolation, symptoms, and uncertainty about prognosis and symptoms. Coping strategies include HF management, dealing with the dying process, and social support. Social workers, who encounter people with HF in a variety of practice settings, can play a key role by focusing on the needs of people with HF, addressing and strengthening their ability to manage their condition, facilitating social support, and helping them to cope with the dying process. Greater attention to these issues in the social work literature is needed, with a particular focus on the role of racial and ethnic diversity as they pertain to people with HF facing end-of-life issues.

Family function in cognitively normal children with epilepsy: impact on competence and problem behaviors.

A cross-sectional cohort of 82 cognitively normal children with epilepsy attending the pediatric neurology clinic, who were aged 6-17 years and who had a similarly aged sibling without seizures or cognitive delay, were identified. The parent was asked to complete the Family Assessment Measure III (FAM-III) as well as the Child Behavior Checklist (CBCL) for both the child with epilepsy and his or her sibling. The Overall Rating Score on FAM-III did not differ significantly from the normative mean, although families scored significantly better on the Involvement subscale and significantly worse on the Role Performance subscale. Moderate correlations were found between competence and behavior problems and family function in both children with epilepsy and their siblings. In families functioning at the highest level, both cohorts did well. In those at the lowest level, approximately half of the children in either cohort had problems. For average functioning families, behavior and competence issues were more frequent in children with epilepsy than their siblings.

Epilepsy: an overview.

According to Epilepsy Canada (2001), one to two per cent of Canadians have epilepsy and 75 to 80 per cent of these people develop it before the age of 18. Despite the fact that many famous and successful people throughout history have had epilepsy, misunderstanding and prejudice about this common neurological disorder remain prevalent. In our experience, some people diagnosed with epilepsy do not tell others about their medical condition because of their fear of being stigmatized and shunned.

Effect of DNA Scaffolding on Intramolecular Electron Transfer Quenching of a Photoexcited Ruthenium(II) Polypyridine Naphthalene Diimide.

Intramolecular emission quenching of a photoexcited ruthenium(II) polypyridine by a covalently linked naphthalene diimide (NDI) has been measured in aqueous buffer both without and with calf thymus DNA. The complex consists of a Ru(2,2'-bipyridine)(2)(2,2'-bipyridine-5-carboxamide)(2+) electron donor covalently attached by way of a -CH(2)CH(2)CH(2)- linker to a 1,4,5,8-naphthalene diimide acceptor (Ru-NDI, 1). The NDI portion of the complex intercalates in calf thymus DNA, as indicated by the hypochromism of its optical absorbance bands and observation of an induced circular dichroism spectrum in the same region. Emission quenching in Ru-NDI has been measured relative to a Ru tris-bpy model lacking the NDI moiety by both lifetime and emission quantum yield techniques. Using lifetime averages, the relative emission quenching is, respectively, 99.1% and 97.9% in aqueous buffer solutions without and with DNA. The emission quenching is ascribed to intramolecular electron transfer within the Ru-NDI complex with an estimated driving force (-DeltaG degrees ) of 0.33 eV. In buffer, the emission decays of Ru-NDI alone are fit well with a triexponential model with lifetimes of 0.34 (0.88), 1.99 (0.11), and 12.6 (0.008) ns (relative amplitude). The emission decays of the DNA-intercalated Ru-NDI complex are also fit well with a triexponential model with lifetimes of 0.31 (0.79), 2.00 (0.13), and 11.8 (0.08) ns. Thus, the fractional amplitudes of the lifetimes change upon DNA intercalation of the complex, while the lifetimes themselves remain essentially the same. The average rates of electron transfer in aqueous buffer without and with DNA are, respectively, 1.6 x 10(9) and 6.8 x 10(8) s(-)(1). The striking result of this study is that the overall character of electron transfer quenching in Ru-NDI is very similar whether or not it is bound to DNA. Intercalation of the NDI in DNA apparently has negligible consequences for electron transfer, implying either that the activation energy and electronic coupling in Ru-NDI are largely unaffected by this, at first glance, seemingly significant environmental change or that changes in these parameters on DNA binding cancel fortuitously.