RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases

From 7th European Conference on Rare Diseases and Orphan Products (ECRD 2014).Rare diseases; clinical practice guidelines; recommendations. RARE-Bestpractices (http://www.rarebestpractices.eu) is a 4-year project (2013-2016) funded by the EC FP7. The project aims at improving clinical management of patients with rare diseases (RD) and at narrowing the existing gap in quality of healthcare among countries. Methods: RARE-Bestpractices (http://www.rarebestpractices.eu) involves 9 EU countries, including 15 partners from academic institutions, governmental bodies, patient organizations and networks, which will exploit the added value of integrating different contributions and viewpoints. The platform is developed involving both experts in RD research as well as experts in clinical practice guidelines (CPG) and systematic reviews. Results: Project expected outputs include: 1) identification of challenges to be considered in deriving high quality standards for CPG on RD; 2) transparent procedures and criteria for the evaluation of CPG and their collection in a publicly searchable database; 3) identification of notation criteria to improve user understandability and implementation of CPG; 4) production of mechanisms to assess RD clinical research needs; 5) development of training activities targeted to key stakeholders to disseminate process and tools for developing and evaluating CPG; 6) the publication of a new scientific journal (http://rarejournal.org). Discussion: RARE-Bestpractices addresses the demands from both patients and health care providers for updated and high quality CPG on RD. The project will meet the requirements laid down by to the Directive 2011/24/EU, which endorses EU MS to develop European Reference Networks (ERNs) for RD; in fact, one main criterion for ERNs should be the competence to produce CPG and actively disseminate them among Centers of Expertise.N

Sociodemographic and clinical predictors of compliance with antidepressants for depressive disorders: systematic review of observational studies

Amado Rivero-Santana,1 Lilisbeth Perestelo-Perez,2,3 Jeanette Pérez-Ramos,1 Pedro Serrano-Aguilar,2,3 Carlos De las Cuevas2,4 1Canary Islands Foundation of Health and Research, 2Red de Investigacion en Servicios de Salud en Enfermedades Cronicas (REDISSEC), Santa Cruz de Tenerife, 3Evaluation Unit, Canary Islands Health Service, Santa Cruz de Tenerife, 4Department of Psychiatry, University of La Laguna, Canary Islands, Spain Background: The literature shows that compliance with antidepressant treatment is unsatisfactory. Several personal and disease-related variables have been shown to be related to compliance behavior. The objective of this study was to review the literature about sociodemographic and clinical predictors of compliance in patients with depressive disorders. Methods: The Medline, Embase, Cochrane Central, PsycInfo, and Cinahl databases were searched until May 2012. Studies that analyzed sociodemographic and clinical predictors or correlates of compliance in patients with depressive disorder were included. A quantitative synthesis was not performed because of the heterogeneity and availability of the data reported. For similar reasons, the results were not classified according to the different phases of treatment. The search was limited to studies published in English and Spanish. Results: Thirty-two studies fulfilled the inclusion criteria. The most consistent associations with compliance were found for age (older patients showed more compliance) and race (white patients were more likely to adhere to treatment than minority ethnic groups). Few studies assessed clinical factors, and the most plausible predictors of compliance were certain comorbidities and substance abuse. Severity of depression did not play an important role in predicting compliance. Conclusion: The impact of the variables studied on compliance behavior appeared to be inconsistent. Identifying potential predictors of compliance with antidepressant treatment is important, both for the routine practice of the mental health professional and for refining interventions to enhance adherence and target them to specific populations at risk of noncompliance. Keywords: adherence, antidepressants, compliance, depression, predictor

European experience with shared decision making

Background: Shared decision making (SDM) is frequently advocated but not yet widely implemented in European countries. Experience suggests that various incentives must be in alignment to encourage wider uptake. Objectives: To assess readiness for mainstream implementation of SDM in five European countries. Methods: Qualitative assessment of clinical policies and the availability of various SDM support services in Germany, France, Spain, the Netherlands and the UK. Results: All five countries have research groups working on SDM, patient groups calling for its wider use, and ethical and professional standards indicating its desirability, but apart from a small number of demonstration projects, there is no evidence of a systematic approach to implementation in any of the countries as yet. Conclusions: Greater attention will need to be given to the provision of effective leadership, training and practical support if SDM is to become a regular feature of clinical practice in these countries

Are We Improving? Update and Critical Appraisal of the Reporting of Decision Process and Quality Measures in Trials Evaluating Patient Decision Aids

BACKGROUND: In 2014, a systematic review found large gaps in the quality of reporting of measures used in 86 published trials evaluating the effectiveness of patient decision aids (PtDAs). The purpose of this study was to update that review. METHODS: We examined measures of decision making used in 49 randomized controlled trials included in the 2014 and 2017 Cochrane Collaboration systematic review of PtDAs. Data on development of the measures, reliability, validity, responsiveness, precision, interpretability, feasibility, and acceptability were independently abstracted by 2 paired reviewers. RESULTS: Information from 273 measures was abstracted, and 109 of these covered the core domains of decision processes (n = 55) and decision quality including informed choice/knowledge (n = 48) and values-choice concordance (n = 12). Very few studies reported data on the performance and clinical sensibility of measures, with reliability (23%) and validity (6%) being the most common. Studies using new measures were less likely to include information about their psychometric performance compared with previously published measures. LIMITATIONS: The review was limited to reporting of measures in studies included in the Cochrane review and did not consult prior publications. CONCLUSION: There continues to be very little reported about the development or performance of measures used to evaluate the effectiveness of PtDAs in published trials. Minimum reporting standards have been published, and efforts to require investigators to use them are needed