Unmet needs of people with epilepsy: A qualitative study exploring their journey from presentation to long-term management across five European countries.

Introduction: Epilepsy is a neurological disease that can negatively impact a person's physical, psychological, social, and emotional well-being. The aim of this study was to provide insights into the experiences of people with epilepsy on polytherapy (i.e., people on a combination of two or more anti-seizure medications [ASMs]), with an emphasis on their emotional journey. Methods: Market research was conducted with 40 people with epilepsy from France, Germany, Italy, Spain, and the United Kingdom. Semi-structured interviews were analyzed using both a content and framework analysis approach. A content analysis of participants' expressed emotions was used to illustrate the changes of emotions experienced by people with epilepsy from presentation through to monitoring and follow-up stages. Results: In each stage of the journey, themes and subthemes were identified under the overarching headings: Stage 1: Presentation - Life is turned upside down; Stage 2: Diagnosis - Period of learning; Stage 3: Treatment - Aspirations and experimentation; and Stage 4: Monitoring and follow-up - Feeling "out on a limb". The research identified key unmet needs and opportunities for people with epilepsy to improve their subjective experiences at different stages of their disease journey, namely: (1) establish and promote support networks from presentation through to monitoring and follow-up stages; (2) accelerate pathway to diagnosis; (3) provide opportunities to discuss the diagnosis with patients; (4) clarify treatment-change guidelines for patients; and (5) develop a shared treatment decision-making/empowerment tool. Discussion: The research findings and recommendations have the potential to drive change at an individual level, as well as at a healthcare level.

What Works in Violence Prevention Among Young People?: A Systematic Review of Reviews.

Violence prevention programs aim to raise awareness, change attitudes, normative beliefs, motivation, and behavioral responses. Many programs have been developed and evaluated, and optimistic claims about effectiveness made. Yet comprehensive guidance on program design, implementation, and evaluation is limited. The aim of this study was to provide an up-to-date review of evidence on what works for whom. A systematic search of PsycINFO, MEDLINE, ERIC, and Sociology Collection ProQuest identified 40 reviews and meta-analyses reporting on the effectiveness of violence prevention programs among young people (age 15-30) in educational institutions, published before October 2018. These included reviews of programs designed to reduce (i) bullying, (ii) dating and relationship violence, (iii) sexual assault, and (iv) antisocial behavior. Only evaluations that reported on behavioral outcomes such as perpetration, victimization, and bystander behavior were included. The reviewed evaluations reported on programs that were mainly implemented in high-income countries in Europe and North America. The majority found small effects on violence reduction and victimization and increases in self-reported bystander behavior. Our findings expose critical gaps in evaluation research in this area and provide recommendations on how to optimize the effectiveness of future programs.

What works to increase attendance for diabetic retinopathy screening? An evidence synthesis and economic analysis.

BACKGROUND: Diabetic retinopathy screening (DRS) is effective but uptake is suboptimal. OBJECTIVES: To determine the effectiveness of quality improvement (QI) interventions for DRS attendance; describe the interventions in terms of QI components and behaviour change techniques (BCTs); identify theoretical determinants of attendance; investigate coherence between BCTs identified in interventions and determinants of attendance; and determine the cost-effectiveness of QI components and BCTs for improving DRS. DATA SOURCES AND REVIEW METHODS: Phase 1 - systematic review of randomised controlled trials (RCTs) evaluating interventions to increase DRS attendance (The Cochrane Library, MEDLINE, EMBASE and trials registers to February 2017) and coding intervention content to classify QI components and BCTs. Phase 2 - review of studies reporting factors influencing attendance, coded to theoretical domains (MEDLINE, EMBASE, PsycINFO and sources of grey literature to March 2016). Phase 3 - mapping BCTs (phase 1) to theoretical domains (phase 2) and an economic evaluation to determine the cost-effectiveness of BCTs or QI components. RESULTS: Phase 1 - 7277 studies were screened, of which 66 RCTs were included in the review. Interventions were multifaceted and targeted patients, health-care professionals (HCPs) or health-care systems. Overall, interventions increased DRS attendance by 12% [risk difference (RD) 0.12, 95% confidence interval (CI) 0.10 to 0.14] compared with usual care, with substantial heterogeneity in effect size. Both DRS-targeted and general QI interventions were effective, particularly when baseline attendance levels were low. All commonly used QI components and BCTs were associated with significant improvements, particularly in those with poor attendance. Higher effect estimates were observed in subgroup analyses for the BCTs of 'goal setting (outcome, i.e. consequences)' (RD 0.26, 95% CI 0.16 to 0.36) and 'feedback on outcomes (consequences) of behaviour' (RD 0.22, 95% CI 0.15 to 0.29) in interventions targeting patients and of 'restructuring the social environment' (RD 0.19, 95% CI 0.12 to 0.26) and 'credible source' (RD 0.16, 95% CI 0.08 to 0.24) in interventions targeting HCPs. Phase 2 - 3457 studies were screened, of which 65 non-randomised studies were included in the review. The following theoretical domains were likely to influence attendance: 'environmental context and resources', 'social influences', 'knowledge', 'memory, attention and decision processes', 'beliefs about consequences' and 'emotions'. Phase 3 - mapping identified that interventions included BCTs targeting important barriers to/enablers of DRS attendance. However, BCTs targeting emotional factors around DRS were under-represented. QI components were unlikely to be cost-effective whereas BCTs with a high probability (≥ 0.975) of being cost-effective at a societal willingness-to-pay threshold of £20,000 per QALY included 'goal-setting (outcome)', 'feedback on outcomes of behaviour', 'social support' and 'information about health consequences'. Cost-effectiveness increased when DRS attendance was lower and with longer screening intervals. LIMITATIONS: Quality improvement/BCT coding was dependent on descriptions of intervention content in primary sources; methods for the identification of coherence of BCTs require improvement. CONCLUSIONS: Randomised controlled trial evidence indicates that QI interventions incorporating specific BCT components are associated with meaningful improvements in DRS attendance compared with usual care. Interventions generally used appropriate BCTs that target important barriers to screening attendance, with a high probability of being cost-effective. Research is needed to optimise BCTs or BCT combinations that seek to improve DRS attendance at an acceptable cost. BCTs targeting emotional factors represent a missed opportunity to improve attendance and should be tested in future studies. STUDY REGISTRATION: This study is registered as PROSPERO CRD42016044157 and PROSPERO CRD42016032990. FUNDING: The National Institute for Health Research Health Technology Assessment programme.

Interventions to increase attendance for diabetic retinopathy screening.

BACKGROUND: Despite evidence supporting the effectiveness of diabetic retinopathy screening (DRS) in reducing the risk of sight loss, attendance for screening is consistently below recommended levels. OBJECTIVES: The primary objective of the review was to assess the effectiveness of quality improvement (QI) interventions that seek to increase attendance for DRS in people with type 1 and type 2 diabetes.Secondary objectives were:To use validated taxonomies of QI intervention strategies and behaviour change techniques (BCTs) to code the description of interventions in the included studies and determine whether interventions that include particular QI strategies or component BCTs are more effective in increasing screening attendance;To explore heterogeneity in effect size within and between studies to identify potential explanatory factors for variability in effect size;To explore differential effects in subgroups to provide information on how equity of screening attendance could be improved;To critically appraise and summarise current evidence on the resource use, costs and cost effectiveness. SEARCH METHODS: We searched the Cochrane Library, MEDLINE, Embase, PsycINFO, Web of Science, ProQuest Family Health, OpenGrey, the ISRCTN, ClinicalTrials.gov, and the WHO ICTRP to identify randomised controlled trials (RCTs) that were designed to improve attendance for DRS or were evaluating general quality improvement (QI) strategies for diabetes care and reported the effect of the intervention on DRS attendance. We searched the resources on 13 February 2017. We did not use any date or language restrictions in the searches. SELECTION CRITERIA: We included RCTs that compared any QI intervention to usual care or a more intensive (stepped) intervention versus a less intensive intervention. DATA COLLECTION AND ANALYSIS: We coded the QI strategy using a modification of the taxonomy developed by Cochrane Effective Practice and Organisation of Care (EPOC) and BCTs using the BCT Taxonomy version 1 (BCTTv1). We used Place of residence, Race/ethnicity/culture/language, Occupation, Gender/sex, Religion, Education, Socioeconomic status, and Social capital (PROGRESS) elements to describe the characteristics of participants in the included studies that could have an impact on equity of access to health services.Two review authors independently extracted data. One review author entered the data into Review Manager 5 and a second review author checked them. Two review authors independently assessed risks of bias in the included studies and extracted data. We rated certainty of evidence using GRADE. MAIN RESULTS: We included 66 RCTs conducted predominantly (62%) in the USA. Overall we judged the trials to be at low or unclear risk of bias. QI strategies were multifaceted and targeted patients, healthcare professionals or healthcare systems. Fifty-six studies (329,164 participants) compared intervention versus usual care (median duration of follow-up 12 months). Overall, DRS attendance increased by 12% (risk difference (RD) 0.12, 95% confidence interval (CI) 0.10 to 0.14; low-certainty evidence) compared with usual care, with substantial heterogeneity in effect size. Both DRS-targeted (RD 0.17, 95% CI 0.11 to 0.22) and general QI interventions (RD 0.12, 95% CI 0.09 to 0.15) were effective, particularly where baseline DRS attendance was low. All BCT combinations were associated with significant improvements, particularly in those with poor attendance. We found higher effect estimates in subgroup analyses for the BCTs 'goal setting (outcome)' (RD 0.26, 95% CI 0.16 to 0.36) and 'feedback on outcomes of behaviour' (RD 0.22, 95% CI 0.15 to 0.29) in interventions targeting patients, and 'restructuring the social environment' (RD 0.19, 95% CI 0.12 to 0.26) and 'credible source' (RD 0.16, 95% CI 0.08 to 0.24) in interventions targeting healthcare professionals.Ten studies (23,715 participants) compared a more intensive (stepped) intervention versus a less intensive intervention. In these studies DRS attendance increased by 5% (RD 0.05, 95% CI 0.02 to 0.09; moderate-certainty evidence).Fourteen studies reporting any QI intervention compared to usual care included economic outcomes. However, only five of these were full economic evaluations. Overall, we found that there is insufficient evidence to draw robust conclusions about the relative cost effectiveness of the interventions compared to each other or against usual care.With the exception of gender and ethnicity, the characteristics of participants were poorly described in terms of PROGRESS elements. Seventeen studies (25.8%) were conducted in disadvantaged populations. No studies were carried out in low- or middle-income countries. AUTHORS' CONCLUSIONS: The results of this review provide evidence that QI interventions targeting patients, healthcare professionals or the healthcare system are associated with meaningful improvements in DRS attendance compared to usual care. There was no statistically significant difference between interventions specifically aimed at DRS and those which were part of a general QI strategy for improving diabetes care. This is a significant finding, due to the additional benefits of general QI interventions in terms of improving glycaemic control, vascular risk management and screening for other microvascular complications. It is likely that further (but smaller) improvements in DRS attendance can also be achieved by increasing the intensity of a particular QI component or adding further components.

Barriers and enablers to diabetic retinopathy screening attendance: Protocol for a systematic review.

BACKGROUND: Diabetic retinopathy is a serious complication of diabetes which, if left untreated, can result in blindness. Population screening among people with diabetes has been shown to be clinically effective; however, suboptimal attendance with wide demographic disparities has been reported. To develop quality improvement interventions to maximise attendance, it is important to understand the theoretical determinants (i.e. barriers and enablers) of screening behaviour. The aim of this systematic review is to identify and synthesise the modifiable barriers and enablers associated with diabetic retinopathy screening attendance. METHODS/DESIGN: Primary and secondary studies will be included if they report perceived barriers/enablers of diabetic retinopathy screening attendance, from the perspectives of people with diabetes and healthcare providers. There will be no restrictions on study design. Studies will be identified from published and grey literature through multiple sources. Bibliographic databases will be searched using synonyms in four search domains: diabetic retinopathy; screening; barriers/enablers; and theoretical constructs relating to behaviour. Search engines and established databases of grey literature will be searched to identify additional relevant studies. Extracted data will include: participant quotations from qualitative studies, statistical analyses from questionnaire and survey studies, and interpretive descriptions and summaries of results from reports. All extracted data will be coded into domains from the Theoretical Domains Framework (TDF) and (for organisational level data) the Consolidated Framework of Implementation Research (CFIR); with domains representing theoretical barriers/enablers proposed to mediate behaviour change. The potential role of each domain in influencing retinopathy screening attendance will be investigated through thematic analysis of the TDF/ CFIR coding. Domain importance will be identified using pre-specified criteria: "frequency" and "expressed importance". Variations in perceived barriers and enablers between demographic groups (e.g., socio-economic, ethnic) will be explored. DISCUSSION: This review will identify important barriers and enablers likely to influence attendance for diabetic retinopathy screening. The results will be used to assess the extent to which existing interventions targeting attendance address the theoretical determinants of attendance behaviour. Findings will inform recommendations for future intervention design. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42016032990.