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Better evidence for earlier assessment and surgical intervention for refractory epilepsy (The BEST study): a mixed methods study protocol.

ABSTRACT: INTRODUCTION:One-third of patients with refractory epilepsy may be candidates for resective surgery, which can lead to positive clinical outcomes if efficiently managed. In Australia, there is currently between a 6-month and 2-year delay for patients who are candidates for respective epilepsy surgery from the point of referral for surgical assessment to the eventual surgical intervention. This is a major challenge for implementation of effective treatment for individuals who could potentially benefit from surgery. This study examines implications of delays following the point of eligibility for surgery, in the assessment and treatment of patients, and the factors causing treatment delays. METHODS AND ANALYSIS:Mixed methods design: Observations of qualitative consultations, patient and healthcare professional interviews, and health-related quality of life assessments for a group of 10 patients and six healthcare professionals (group 1); quantitative retrospective medical records' reviews examining longitudinal outcomes for 50 patients assessed for, or undergoing, resective surgery between 2014 and 2016 (group 2); retrospective epidemiological study of all individuals hospitalised with a diagnosis of epilepsy in New South Wales (NSW) in the last 5?years (2012-2016; approximately 11?000 hospitalisations per year, total 55 000), examining health services' use and treatment for individuals with epilepsy, including refractory surgery outcomes (group 3). ETHICS AND DISSEMINATION:Ethical approval has been granted by the North Sydney Local Health District Human Research Ethics Committee (HREC/17/HAWKE/22) and the NSW Population & Health Services Research Ethics Committee (HREC/16/CIPHS/1). Results will be disseminated through publications, reports and conference presentations to patients and families, health professionals and researchers.

SUBMITTER: Rapport F

PROVIDER: S-EPMC5724135 | biostudies-literature | 2017 Aug

REPOSITORIES: biostudies-literature

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Better evidence for earlier assessment and surgical intervention for refractory epilepsy (The BEST study): a mixed methods study protocol.

Rapport Frances F Shih Patti P Mitchell Rebecca R Nikpour Armin A Bleasel Andrew A Herkes Geoffrey G Vagholkar Sanjyot S Mumford Virginia V

BMJ open 20170821 8

<h4>Introduction</h4>One-third of patients with refractory epilepsy may be candidates for resective surgery, which can lead to positive clinical outcomes if efficiently managed. In Australia, there is currently between a 6-month and 2-year delay for patients who are candidates for respective epilepsy surgery from the point of referral for surgical assessment to the eventual surgical intervention. This is a major challenge for implementation of effective treatment for individuals who could potent ...[more]

PMID: 28827267

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Project description:BackgroundPeripheral perfusion index (PPI) is an indicator reflecting perfusion. Patients undergoing long time surgeries are more prone to hypoperfusion and increased lactate. Few studies focusing on investigating the association between PPI and surgical patients' prognoses. We performed this study to find it out.MethodsFrom January 2019 to September 2019, we retrospected all surgical patients who were transferred to ICU, Xinyang Central hospital, Henan province, China. Inclusive criteria: age???18?years old; surgical length???120?min. Exclusive criteria: died in ICU; discharging against medical advice; existing diseases affecting blood flow of upper limbs, for example, vascular thrombus in arms; severe liver dysfunction. We defined "prolonged ICU stay" as patients with their length of ICU stay longer than 48?h. According to the definition, patients were divided into two groups: "prolonged group" (PG) and "non-prolong group" (nPG). Baseline characteristics, surgical and therapeutic information, ICU LOS, SOFA and APACHE II were collected. Besides we gathered data of following parameters at 3 time points (T0: ICU admission; T1: 6?h after admission; T2: 12?h after admission): mean artery pressure (MAP), lactate, heart rate (HR), PPI and body temperature. Data were compared between the 2 groups. Multivariable binary logistic regression and ROC (receiver operating characteristic) curves were performed to find the association between perfusion indictors and ICU LOS.ResultsEventually, 168 patients were included, 65 in PG and 103 in nPG. Compared to nPG, patients in PG had higher blood lactate and lower PPI. PPI showed significant difference between two groups earlier than lactate (T0 vs T1). The value of PPI at two time points was lower in PG than nPG(T0: 1.09?±?0.33 vs 1.41?±?0.45, p?= 0.001; T1: 1.08?±?0.37 vs 1.49?±?0.41, p?< 0.001). Increased lactateT1(OR 3.216; 95% CI 1.253-8.254, P?= 0.015) and decreased PPIT1 (OR 0.070; 95% CI 0.016-0.307, P <?0.001) were independently associated with prolonged ICU stay. The area under ROC of the PPIT1 for predicting ICU stay>?48?h was 0.772, and the cutoff value for PPIT1 was 1.35, with 83.3% sensitivity and 73.8% specificity.ConclusionsPPI and blood lactate at T1(6 h after ICU admission) are associated with ICU LOS in surgical patient. Compared to lactate, PPI indicates hypoperfusion earlier and more accurate in predicting prolonged ICU stay.

Project description:Managed cancer networks are widely promoted in national cancer control programs as an organizational form that enables integrated care as well as enhanced patient outcomes. While national programs are set by policy-makers, the detailed implementation of networks is delegated at the service delivery and institutional levels. It is likely that the capacity to ensure more integrated cancer services requires multi-level governance processes responsive to the strengths and limitations of the contexts and capable of supporting network-based working. Based on an empirical case, this study aims to analyze the implementation of a mandated cancer network, focusing on governance and health services integration as core concepts in the study.This nested multi-case study uses mixed methods to explore the implementation of a mandated cancer network in Quebec, a province of Canada. The case is the National Cancer Network (NCN) subdivided into three micro-cases, each defined by the geographic territory of a health and social services region. For each region, two local health services centers (LHSCs) are selected based on their differences with respect to determining characteristics. Qualitative data will be collected from various sources using three strategies: review of documents, focus groups, and semi-directed interviews with stakeholders. The qualitative data will be supplemented with a survey that will measure the degree of integration as a proxy for implementation of the NCN. A score will be constructed, and then triangulated with the qualitative data, which will have been subjected to content analysis. Qualitative, quantitative, and mixed methods data will be interpreted within and across cases in order to identify governance patterns similarities and differences and degree of integration in contexts.This study is designed to inform decision-making to develop more effective network implementation strategies by thoroughly describing multi-level governance processes of a sample of settings that provide cancer services. Although the study focuses on the implementation of a cancer network in Quebec, the rich descriptions of multiple nested cases will generate data with a degree of generalizability for health-care systems in developed countries.

Project description:BackgroundSafe, high-quality surgical care in many African countries is a critical need. Challenges include availability of surgical providers, improving quality of care, and building workforce capacity. Despite growing evidence that mentoring is effective in African healthcare settings, less is known about its role in surgery. We examined a multimodal approach to mentorship as part of a safe surgery intervention (Safe Surgery 2020) to improve surgical quality. Our goal was to distill lessons for policy makers, intervention designers, and practitioners on key elements of a successful surgical mentorship program.MethodsWe used a convergent, mixed-methods design to examine the experiences of mentees, mentors, and facility leaders with mentorship at 10 health facilities in Tanzania's Lake Zone. A multidisciplinary team of mentors worked with surgical providers over 17 months using in-person mentorship, telementoring, and WhatsApp. We conducted surveys, in-depth interviews, and focus groups to capture data in four categories: (1) satisfaction with mentorship; (2) perceived impact; (3) elements of a successful mentoring program; and (4) challenges to implementing mentorship. We analyzed quantitative data using frequency analysis and qualitative data using the constant comparison method. Recurrent and unifying concepts were identified through merging the qualitative and quantitative data.ResultsOverall, 96% of mentees experienced the intervention as positive, 88% were satisfied, and 100% supported continuing the intervention in the future. Mentees, mentors, and facility leaders perceived improvements in surgical practice, the surgical ecosystem, and in reducing postsurgical infections. Several themes related to the intervention's success emerged: (1) the intervention's design, including its multimodality, side-by-side mentorship, and standardization of practices; (2) the mentee-mentor relationship, including a friendly, safe, non-hierarchical, team relationship, as well as mentors' understanding of the local context; and (3) mentorship characteristics, including non-judgmental feedback, experience, and accessibility. Challenges included resistance to change, shortage of providers, mentorship dose, and logistics.ConclusionsOur study suggests a multimodal mentorship approach is promising in building the capacity of surgical providers. By distilling the experiences of the mentees, mentors, and facility leaders, our lessons provide a foundation for future efforts to establish effective surgical mentorship programs that build provider capacity and ultimately improve surgical quality.

Project description:BackgroundRelapsed and refractory multiple myeloma (RRMM) is a bone marrow cancer that requires systemic treatment, which often results in severe symptom burden. Recent studies have found that electronic patient-reported outcome (ePRO) interventions implemented in the clinic setting have had positive outcomes for other oncology populations. Evidence of the efficacy of a similar approach is lacking for patients with RRMM.ObjectiveRecent recommendations for digital health interventions call for the publication of descriptions of iterative development processes in order to improve reproducibility and comparability. This study is an implementation pilot aiming to evaluate the acceptability and appropriateness of an ePRO intervention for patients with RRMM and to explore its impact on clinic workflow.MethodsA total of 11 patients with RRMM were recruited from the John Theurer Cancer Center in Hackensack, New Jersey. Patients used a mobile app to report on 17 symptoms at 4 sessions, each a week apart. Patients could also report symptoms ad hoc. When reports met predefined thresholds, the clinic was alerted and patients received automated guidance. Study end points were assessed using qualitative and quantitative methods.ResultsA total of 9 patients (mean age 69.7 years) completed the study. Overall, 83% (30/36) of weekly sessions were completed. Patients found the frequency and time required to complete reporting acceptable. All patients agreed that the app was easy to use and understand. Providers felt the alerts they received required refinement. Patients and providers agreed it would be beneficial for patients to report for longer than 4 weeks. Patients felt that the training they received was adequate but contained too much information for a single session. All patients found the symptoms tracked to be appropriate; providers suggested shortening the list. All patients understood how to use the app for weekly reporting but had confusion about using it ad hoc. Providers felt the ad hoc feature could be removed. Neither patients nor providers viewed the in-app data reports but agreed on their potential value. Patients reported benefitting from symptom reporting through increased awareness of their symptoms. Clinic staff reported that app alerts were too numerous and redundant. They had difficulty responding to alerts within their existing workflow, partially because the data were not integrated into the electronic medical record system.ConclusionsOverall, the intervention was found to be acceptable and appropriate for patients with RRMM. Points of friction integrating the intervention into the clinic workflow were identified. Clinic staff provided recommendations for addressing these issues. Once such modifications are implemented, ePRO data from patients with RRMM could be used to inform and improve clinical research and care. This study underlines the importance of an iterative approach to implementation that includes all stakeholders in order to ensure successful adoption.

Project description:BackgroundWomen-held documents are a basic component of continuity of maternity care. The use and completion of women-held documents following discharge could improve treatment and care for postnatal women. Using a mixed-methods study design, we aimed to assess the number, type, quality and completeness of women-held discharge documents, identify factors contributing to document completeness and facilitators or barriers for effective use of the documents.MethodsDocuments given to women at discharge from three hospitals in the Greater Banjul Area, The Gambia, were reviewed for content and quality. All women completed a questionnaire on the use of the documents. Poisson regression was used to estimate factors predicting document completion. Semi-structured interviews (n = 21) and focus groups (n = 2) were carried out with healthcare professionals (HCPs).ResultsNearly all (n = 211/212; 99%) women were given a document to take home. The most complete document (maternal record) had on average 17/26 (65%) items completed and 10% of women held an illegible document. None of the women's sociodemographic or clinical characteristics predicted document completeness. The following facilitators for effective use of documents were identified from the women's responses to the questionnaire and interviews with HCPs: 94% of women thought written information is important, 99% plan to have postnatal check-ups and 67% plan to use their documents, HCPs understand the importance of the documents and were familiar with the document's use and content. The following barriers for effective use of documents were identified: HCPs had too many women-held documents to complete at discharge, there is no national protocol and HCPs think women do not understand the documents due to a lack of education and that women often lose or forget their documents.ConclusionsWomen-held documents are well established in The Gambia; though quality and completeness needs improving. Future research should determine the impact of using only one document at discharge, protocols and training on completeness, among other outcomes, and on ways to ensure all women are using the documents for their postnatal care.

Project description:BackgroundResearch and cancer care are closely intertwined; however, it is not clear whether physicians and nurses believe that clinical trials offer the best treatment for patients and, if so, whether this belief is justified. The aim of this study was therefore: (i) to explore how physicians and nurses perceive the benefits of clinical trial participation compared with standard care and (ii) whether it is justified to claim that clinical trial participation improves outcomes for cancer patients.MethodsA mixed methods approach was used employing semi-structured interviews with 57 physicians and nurses in oncology and haematology and a literature review of the evidence for trial superiority, i.e. the idea that receiving treatment in a clinical trial leads to a better outcome compared with standard care. Inductive thematic analysis was used to examine the interview data. A literature review comprising nine articles was conducted according to a conceptual framework developed by Peppercorn et al. and evaluated recent evidence on trial superiority.ResultsOur findings show that many physicians and nurses make claims supporting trial superiority, however very little evidence is available in the literature comparing outcomes for trial participants and non-participants that supports their assertions.ConclusionsDespite the recent rapid development and use of targeted therapy and immunotherapy, we find no support for trial participation to provide better outcomes for cancer patients than standard care. Hence, our present results are in line with previous results from Peppercorn et al. A weaker version of the superiority claim is that even if a trial does not bring about a direct positive effect, it brings about indirect positive effects. However, as the value of such indirect effects is dependent on the individual's specific circumstances and preferences, their existence cannot establish the general claim that treatment in trials is superior. Belief in trial superiority is therefore unfounded. Hence, if such beliefs are communicated to patients in a trial recruitment context, it would provide misleading information. Instead emphasis should be on patients volunteering to give an altruistic contribution to the furthering of knowledge and to the potential benefit of future patients.

Project description:IntroductionOpioids prescribed after surgery accounted for 5% of the 191 million opioid prescriptions filled in 2017. Approximately 80% of the opioid pills prescribed by surgical care providers remain unused, leaving a substantial number of opioids available for non-medical use. We developed a multi-component intervention to address surgical providers' role in the overprescribing of opioids. Our study will determine effective strategies for reducing post-surgical prescribing while ensuring adequate post-surgery patient-reported pain-related outcomes, and will assess implementation of the strategies.Methods and analysisThe Minimising Opioid Prescribing in Surgery study will implement a multi-component intervention, in an Illinois network of six hospitals (one academical, two large community and three small community hospitals), to decrease opioid analgesics prescribed after surgery. The multi-component intervention involves four domains: (1) patient expectation setting, (2) baseline assessment of opioid use, (3) perioperative pain control optimisation and (4) post-surgical opioid minimisation. Four surgical specialities (general, orthopaedics, urology and gynaecology) at the six hospitals will implement the intervention. A mixed-methods approach will be used to assess the implementation and effectiveness of the intervention. Data from the network's enterprise data warehouse will be used to evaluate the intervention's effect on post-surgical prescriptions and a survey will collect pain-related patient-reported outcomes. Intervention effectiveness will be determined using a triangulation design, mixed-methods approach with staggered speciality-specific implementation for contemporaneous control of opioid prescribing changes over time. The Consolidated Framework for Implementation Research will be used to evaluate the site-specific contextual factors and adaptations to achieve implementation at each site.Ethics and disseminationThe study aims to identify the most effective hospital-type and speciality-specific intervention bundles for rapid dissemination into our 56-hospital learning collaborative and in hospitals throughout the USA. All study activities have been approved by the Northwestern University Institutional Review Board (ID STU00205053).

Project description:ObjectiveBy studying the surgical outcome of deep brain stimulation (DBS) of different target nuclei for patients with refractory epilepsy, we aimed to explore a clinically feasible target nucleus selection strategy.MethodsWe selected patients with refractory epilepsy who were not eligible for resective surgery. For each patient, we performed DBS on a thalamic nucleus [anterior nucleus of the thalamus (ANT), subthalamic nucleus (STN), centromedian nucleus (CMN), or pulvinar nucleus (PN)] selected based on the location of the patient's epileptogenic zone (EZ) and the possible epileptic network involved. We monitored the clinical outcomes for at least 12 months and analyzed the clinical characteristics and seizure frequency changes to assess the postoperative efficacy of DBS on the different target nuclei.ResultsOut of the 65 included patients, 46 (70.8%) responded to DBS. Among the 65 patients, 45 underwent ANT-DBS, 29 (64.4%) responded to the treatment, and four (8.9%) of them reported being seizure-free for at least 1 year. Among the patients with temporal lobe epilepsy (TLE, n = 36) and extratemporal lobe epilepsy (ETLE, n = 9), 22 (61.1%) and 7 (77.8%) responded to the treatment, respectively. Among the 45 patients who underwent ANT-DBS, 28 (62%) had focal to bilateral tonic-clonic seizures (FBTCS). Of these 28 patients, 18 (64%) responded to the treatment. Out of the 65 included patients, 16 had EZ related to the sensorimotor cortex and underwent STN-DBS. Among them, 13 (81.3%) responded to the treatment, and two (12.5%) were seizure-free for at least 6 months. Three patients had Lennox-Gastaut syndrome (LGS)-like epilepsy and underwent CMN-DBS; all of them responded to the treatment (seizure frequency reductions: 51.6%, 79.6%, and 79.5%). Finally, one patient with bilateral occipital lobe epilepsy underwent PN-DBS, reducing the seizure frequency by 69.7%.SignificanceANT-DBS is effective for patients with TLE or ETLE. In addition, ANT-DBS is effective for patients with FBTCS. STN-DBS might be an optimal treatment for patients with motor seizures, especially when the EZ overlaps the sensorimotor cortex. CMN and PN may be considered modulating targets for patients with LGS-like epilepsy or occipital lobe epilepsy, respectively.

Dataset Information

Better evidence for earlier assessment and surgical intervention for refractory epilepsy (The BEST study): a mixed methods study protocol.

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Better evidence for earlier assessment and surgical intervention for refractory epilepsy (The BEST study): a mixed methods study protocol.

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