LoVE in a time of CoVID: Clinician and patient experience using telemedicine for chronic epilepsy management.

As part of our ongoing interest in patient- and family-centered care in epilepsy, we began, before the onset of the CoVID-19 pandemic, to evaluate the concerns and preferences of those delivering and receiving care via telemedicine. CoVID-19 arrived and acted as an unexpected experiment in nature, catalyzing telemedicine's widespread implementation across many disciplines of medicine. The arrival of CoVID-19 in Ireland gave us the opportunity to record these perceptions pre- and post-CoVID. Data were extracted from the National Epilepsy Electronic Patient Record (EEPR). Power BI Analytics collated data from two epilepsy centers in Dublin. Analysis of data on reasons for using the telephone support line was conducted. A subset of patients and clinicians who attended virtual encounters over both periods were asked for their perception of telemedicine care through a mixed methods survey. Between 23rd December 2019 and 23rd March 2020 (pre-CoVID era), a total of 1180 patients were seen in 1653 clinical encounters. As part of a telemedicine pilot study, 50 of these encounters were scheduled virtual telephone appointments. Twenty eight surveys were completed by clinicians and 18 by patients during that period. From 24th March 2020 to 24th June 2020, 1164 patients were seen in 1693 encounters of which 729 (63%) patients were seen in 748 scheduled virtual encounters. 118 clinician impressions were captured through an online survey and 75 patients or carers completed a telephone survey during the post-CoVID era. There was no backlog of appointments or loss of care continuity forced by the pandemic. Clinicians expressed strong levels of satisfaction, but some doubted the suitability of new patients to the service or candidates for surgery receiving care via telemedicine. Patients reported positive experiences surrounding telephone appointments comparing them favorably to face-to-face encounters. The availability of a shared EEPR demonstrated no loss of care contact for patients with epilepsy. The survey showed that telemedicine is seen as an effective and satisfactory method of delivering chronic outpatient care.

Self-reported antiepilepsy medication adherence and its connection to perception of medication error.

Although 70% of people with epilepsy (PWE) achieve seizure freedom following an appropriate antiepileptic drug (AED) regime, evidence suggests that adherence to AEDs by PWE is suboptimal. Nonadherence to AEDs is associated with increased morbidity, mortality, emergency department visits, and hospitalizations, with reduced adherence also correlating to a lower quality of life, decreased productivity, and loss of employment. Furthermore, research indicates that medication errors which are widespread in chronic disease are less well studied in epilepsy but are likely also to contribute to avoidable disease morbidity and mortality. The goals of this project were to determine rates of medication adherence by self-reported questionnaire and its links to perceived medication error in a cohort of PWE attending a general epilepsy outpatient clinic. Following a plan-do-study-act cycle, it was found that the most appropriate methodology for conducting was in the form of a bespoke 9-item self-administered questionnaire. One hundred eighty-six PWE completed a nine-question questionnaire asking patients about their own medication adherence habits and their perception that they were previously exposed to medication error. This study found that 41% of respondents reported suboptimal adherence to AED therapy, while 28.5% of respondents self-reported that they unintentionally do not take their AED medication on an occasional, regular, or frequent basis. A 5.9% of respondents self-reported that they intentionally do not take their medication as prescribed. A 6% of respondents self-reported that they are both unintentionally and intentionally nonadherent to their AED therapy. No significant associations were demonstrated between age, sex, perceived effectiveness of medication, feelings of stigma/embarrassment, adverse effects or additional neurological comorbidities, and unintentional or intentional nonadherence. A 28.5% of respondents to the questionnaire reported that they perceived themselves to have been subjected to medication error. Prescribing errors were the most common form of perceived medication error, followed by dispensing errors, then administration errors. Significant associations were found between ineffective medication and feelings of stigma or embarrassment about epilepsy with perceived prescribing errors. Intentional nonadherence to medication was significantly associated with perceived dispensing errors.

An innovative approach to aligning healthcare with what matters most to patients: A hybrid type 1 trial protocol of patient priorities care for older adults with multiple chronic conditions.

BACKGROUND: Providing healthcare for older adults with multiple chronic conditions (MCC) is challenging. Polypharmacy and complex treatment plans can lead to high treatment burden and risk for adverse events. For clinicians, managing the complexities of patients with MCC leaves little room to identify what matters and align care options with patients' health priorities. New care approaches are needed to navigate these challenges. In this clinical trial, we evaluate implementation and effectiveness outcomes of an innovative, structured, patient-centered care approach (Patient Priorities Care; PPC) for reducing treatment burden and aligning health care decisions with the health priorities of older adults with MCC. METHODS: This is a multisite, assessor-blind, two-arm, parallel hybrid type 1 randomized controlled trial. We are enrolling 396 older (65+) Veterans with MCC who receive primary care at the Veterans Affairs Medical Center. Veterans are randomly assigned to either PPC or usual care. In the PPC arm, Veterans have a brief telephone call with a study facilitator to identify their personal health priorities. Then, primary care providers use this information to align healthcare with Veteran priorities during their established clinic appointments. Data are collected at baseline and 4-month follow up to assess for changes in treatment burden and use of home and community services. Formative and summative evaluations are also collected to assess for implementation outcomes according to Proctor's implementation framework. CONCLUSIONS: This work has the potential to significantly improve the standard of care by personalizing healthcare and helping patients achieve what is most important to them.

Ascertainment of Minimal Clinically Important Differences in the Diabetes Distress Scale-17: A Secondary Analysis of a Randomized Clinical Trial.

Importance: The Diabetes Distress Scale-17 (DDS-17) is a common measure of diabetes distress. Despite its popularity, there are no agreed-on minimal clinically important difference (MCID) values for the DDS-17. Objective: To establish a distribution-based metric for MCID in the DDS-17 and its 4 subscale scores (interpersonal distress, physician distress, regimen distress, and emotional distress). Design, Setting, and Participants: This secondary analysis of a randomized clinical trial used baseline and postintervention data from a hybrid (implementation-effectiveness) trial evaluating Empowering Patients in Chronic Care (EPICC) vs an enhanced form of usual care (EUC). Participants included adults with uncontrolled type 2 diabetes (glycated hemoglobin A1c [HbA1c] level >8.0%) who received primary care during the prior year in participating Department of Veterans Affairs clinics across Illinois, Indiana, and Texas. Data collection was completed in November 2018, and data analysis was completed in June 2023. Interventions: Participants in EPICC attended 6 group sessions led by health care professionals based on collaborative goal-setting theory. EUC included diabetes education. Main Outcomes and Measures: The main outcome was distribution-based MCID values for the total DDS-17 and 4 DDS-17 subscales, calculated using the standard error of measurement. Baseline to postintervention changes in DDS-17 and its 4 subscale scores were grouped into 3 categories: improved, no change, and worsened. Multilevel logistic and linear regression models examined associations between treatment group and MCID change categories and whether improvement in HbA1c varied in association with MCID category. Results: A total of 248 individuals with complete DDS-17 data were included (mean [SD] age, 67.4 [8.3] years; 235 [94.76%] men), with 123 participants in the EPICC group and 125 participants in the EUC group. The MCID value for DDS-17 was 0.25 and MCID values for the 4 distress subscales were 0.38 for emotional and interpersonal distress and 0.39 for physician and regimen distress. Compared with EUC, more EPICC participants were in the MCID improvement category on DDS-17 (63 participants [51.22%] vs 40 participants [32.00%]; P = .003) and fewer EPICC participants were in the worsened category (20 participants [16.26%] vs 39 participants [31.20%]; P = .008). There was no direct association of DDS-17 MCID improvement (ß = -0.25; 95% CI, -0.59 to 0.10; P = .17) or worsening (ß = 0.18; 95% CI, -0.22 to 0.59; P = .38) with HbA1c levels among all participants. Conclusions and Relevance: In this secondary analysis of data from a randomized clinical trial, an MCID improvement or worsening of more than 0.25 on the DDS-17 was quantitatively significant and patients in the EPICC group were more likely to experience improvement than those in the EUC group. Trial Registration: ClinicalTrials.gov Identifier: NCT01876485.