Readability of patient information and consent documents in rheumatological studies

BACKGROUND: Before participation in medical research an informed consent must be obtained. This study investigates whether the readability of patient information and consent documents (PICDs) corresponds to the average educational level of participants in rheumatological studies in the Netherlands, Denmark, and Norway. METHODS: 24 PICDs from studies were collected and readability was assessed independently using the Gunning’s Fog Index (FOG) and Simple Measure of Gobbledygook (SMOG) grading. RESULTS: The mean score for the FOG and SMOG grades were 14.2 (9.0–19.0) and 14.2 (12–17) respectively. The mean FOG and SMOG grades were 12.7 and 13.3 in the Dutch studies, 15.0 and 14.9 in the Danish studies, and 14.6 and 14.3 in the Norwegian studies, respectively. Out of the 2865 participants, more than 57 % had a lower educational level than the highest readability score calculated in the individual study. CONCLUSIONS: As the readability level of the PICDs did not match the participants’ educational level, consent may not have been valid, as the participants may have had a limited understanding of what they agreed to participate in. There should be more focus on the readability of PICDs. National guidelines for how to write clear and unambiguous PICDs in simple and easily understandable language could increase the focus on the readability of PICD. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12910-016-0126-0) contains supplementary material, which is available to authorized users

Development of the role and scope of an academic mentorship network for health professionals working with people with rheumatological and musculoskeletal conditions across Europe

The workshop provided an open forum to debate and discuss the aspirations for a mentorship scheme within eular hps, and the possible scope and remit. Some practical examples on how this could be realized were presented and offer routes to the next stages of developing a eular hp mentorship network. What is evident is that expectations of academic mentorship relating to time, scope and support available need to be defined clearly at the outset. Potential mentees need to drive the mentorship relationship, with the responsibility for active learning remaining with the mentee. However, for any mentorship programme to work and have the input of mentors, clear definitions about what mentors can provide must also be clearly articulated and agreed, to ensure that expectations are realistic and sustainable. Conclusion academic mentorship for eular hps working in rmd settings has been identified as an area for development across europe. Sharing and supporting academic expertise and good practice between professions and between countries has been agreed as a positive step to helping support the academic development of all hp groups across europe who are working with people with rmd conditions. Acknowledgements the authors would like to thank fiona cramp, university of west england, for contributing material and professor tony redmond and dr yeliz prior for group facilitation during the eular 2015 mentorship workshop. References cho, cs, ramanan, ra, feldman, md ( 2011). Defining the ideal qualities of mentorship: a qualitative analysis of the characteristics of outstanding mentors. American journal of medicine 124: 453– 8. Crossref pubmed web of science®google scholarmaastricht university find full text connor, mp, pokora, jb ( 2007). Coaching and mentoring at work: developing effective practice. Maidenhead: open university press (mcgraw hill education). Google scholarmaastricht university find full text detsky, as, baerlocher, mo, detsky, md ( 2007). Academic mentoring – how to give it and how to get it. Jama 297: 2134– 6. Crossref cas pubmed web of science®google scholarmaastricht university find full text frank-bertoncelj, m, hatemi, g, ospelt, c, ramiro, s, machado, p, mandl, p, gossec, l, buch, mh ( 2014). Mentoring of young professionals in the field of rheumatology in europe: results from an emerging eular network (emeunet) survey. Clinical and experimental rheumatology 32: 935– 41. Pubmed web of science®google scholarmaastricht university find full text garvey, r, stokes, p, megginson, d ( 2009). Coaching and mentoring: theory and practice. London: sage. Google scholarmaastricht university find full text megginson, d, clutterbuck, d ( 1995). Mentoring in action. London: kogan page. Google scholarmaastricht university find full text parsloe, e ( 1992). Coaching, mentoring and assessing – a practical guide to developing competence. London: kogan page. Google scholarmaastricht university find full text parsloe, e, leedham, m ( 2009). Coaching and mentoring: practical conversations to improve learning. London: kogan page. Google scholarmaastricht university find full text straus, se, graham, id, taylor, m, lockyer, j ( 2008). Development of a mentorship strategy: a knowledge translation case study. Journal of continuing education in the health professions 28: 117– 22. Wiley online library pubmed web of science®google scholarmaastricht university find full text

Dissemination and evaluation of the European League Against Rheumatism recommendations for the role of the nurse in the management of chronic inflammatory arthritis: Results of a multinational survey among nurses rheumatologists and patients

Objectives. The aims of this study were to disseminate, assess agreement with, assess the application of and identify potential barriers for implementation of the European League Against Rheumatism (EULAR) recommendations for the role of nurses in the management of chronic inflammatory arthritis (CIA) using a survey of nurses, rheumatologists and patients. Methods. A Web-based survey was distributed across Europe and the USA using snowball sampling. Levels of agreement and application were assessed using a 0-10 rating scale (0 = none, 10 = full agreement/application). Reasons for disagreement and potential barriers to application of each recommendation were sought. Regional differences with respect to agreement and application were explored. Results. In total, 967 nurses, 548 rheumatologists and 2034 patients from 23 countries participated in the survey. Median level of agreement was high in all three groups, ranging from 8 to 10 per recommendation. Median level of application was substantially lower, ranging from 0 to 8 per recommendation. Agreement and application were lowest in Eastern and Central Europe. The most commonly reported reasons for incomplete agreement were too many other responsibilities (nurses), doubts about knowledge of the nurse (rheumatologists) and fear of losing contact with the rheumatologist (patients). The most commonly reported barriers to the application were time constraints and unavailability of service. Rheumatologists responses suggested that nurses had insufficient knowledge to provide the recommended care. Conclusion. The EULAR recommendations for the role of nurses in the management of CIA have been disseminated among nurses, rheumatologists and patients across Europe and the USA. Agreement with these recommendations is high, but application is lower and differed across regions. © The Author 2014. Published by Oxford University Press. All rights reserved