Anne C. Rahn

Risk knowledge in relapsing multiple sclerosis (RIKNO 1.0) - Development of an outcome instrument for educational interventions

Background Adequate risk knowledge of patients is a prerequisite for shared decision making but few attempts have been made to develop assessment tools. Multiple Sclerosis (MS) is a chronic inflammatory disease of young adults with an increasing number of partially effective immunotherapies and therefore a paradigmatic disease to study patient involvement. Objective/methods Based on an item bank of MS risk knowledge items and patient feedback including perceived relevance we developed a risk knowledge questionnaire for relapsing remitting (RR) MS (RIKNO 1.0) which was a primary outcome measure in a patient education trial (192 early RRMS patients). Results Fourteen of the RIKNO 1.0 multiple-choice items were selected based on patient perceived relevance and item difficulty indices, and five on expert opinion. Mean item difficulty was 0.58, ranging from 0.14 to 0.79. Mean RIKNO 1.0 score increased after the educational intervention from 10.6 to 12.4 (p = 0.0003). Selected items were particularly difficult (e.g. those on absolute risk reductions of having a second relapse) and were answered correctly in only 30% of the patients, even after the intervention. Conclusion Despite its high difficulty, RIKNO 1.0 is a responsive instrument to assess risk knowledge in RRMS patients participating in educational interventions.

A new graphical format to communicate treatment effects to patients—A web‐based randomized controlled trial

Patients making treatment decisions require understandable evidence‐based information. However, evidence on graphical presentation of benefits and side‐effects of medical treatments is not conclusive. The study evaluated a new space‐saving format, CLARIFIG (clarifying risk figures), aiming to facilitate accuracy of comprehension.

Patient education programme on immunotherapy in multiple sclerosis (PEPIMS): a controlled rater-blinded study:

Objective: To investigate the effectiveness of a multi-component evidence-based education programme on disease modifying therapies in multiple sclerosis. Design: Controlled trial with two consecutive patient cohorts and a gap of two months between cohorts. Setting: Three neurological rehabilitation centres. Subjects: Patients with multiple sclerosis within rehabilitation. Interventions: Control group (CG) participants were recruited and received standard information. Two months later, intervention group (IG) participants were recruited and received a six-hour nurse-led interactive group education programme consisting of two parts and a comprehensive information brochure. Main measures: Primary endpoint was “informed choice”, comprising of adequate risk knowledge in combination with congruency between attitude towards immunotherapy and actual immunotherapy uptake. Further outcomes comprised risk knowledge, decision autonomy, anxiety and depression, self-efficacy, and fatigue. Results: A total of 156 patients were included (IG=75, CG=81). The intervention led to significantly more participants with informed choice (IG: 47% vs. CG: 23%, P=0.004). The rate of persons with adequate risk knowledge was significantly higher in the IG two weeks after the intervention (IG: 54% vs. CG: 31%, P=0.007), but not after six months (IG: 48% vs. CG: 31%, P=0.058). No significant differences were shown for positive attitude towards disease modifying therapy (IG: 62% vs. CG: 71%,P=0.29) and for disease modifying therapy status after six months (IG: 61.5% vs CG: 68.6%, P=0.39). Also no differences were found for autonomy preferences and decisional conflict after six months. Conclusion: Delivering evidence-based information on multiple sclerosis disease modifying therapies within a rehabilitation setting led to a marked increase of informed choices.

Causal interpretation of correlational studies - Analysis of medical news on the website of the official journal for German physicians

Background Media frequently draws inappropriate causal statements from observational studies. We analyzed the reporting of study results in the Medical News section of the German medical journal Deutsches Ärzteblatt (DÄ). Methods Study design: Retrospective quantitative content analysis of randomly selected news reports and related original journal articles and press releases. A medical news report was selected if headlines comprised at least two linked variables. Two raters independently categorized the headline and text of each news report, conclusions of the abstract and full text of the related journal article, and the press release. The assessment instrument comprised five categories from ‘neutral’ to ‘unconditionally causal’. Outcome measures: degree of matching between 1) news headlines and conclusions of the journal article, 2) headlines and text of news reports, 3) text and conclusions, and 4) headlines and press releases. We analyzed whether news headlines rated as unconditionally causal based on randomized controlled trials (RCTs). Results One-thousand eighty-seven medical news reports were published between April 2015 and May 2016. The final random sample comprised 176 news reports and 100 related press releases. Degree of matching: 1) 45% (79/176) for news headlines and journal article conclusions, 2) 55% (97/176) for headlines and text, 3) 53% (93/176) for text and conclusions, and 4) 41% (41/100) for headlines and press releases. Exaggerations were found in 45% (80/176) of the headlines compared to the conclusions of the related journal article. Sixty-five of 137 unconditionally causal statements of the news headlines were phrased more weakly in the subsequent news text body. Only 52 of 137 headlines (38%) categorized as unconditionally causal reported RCTs. Conclusion Reporting of medical news in the DÄ medical journal is misleading. Most headlines that imply causal associations were not based on RCTs. Medical journalists should follow standards of reporting scientific study results.

Magnetic resonance imaging as a prognostic disability marker in clinically isolated syndrome: A systematic review

Magnetic resonance imaging (MRI) is the key prognostic tool in people with a clinically isolated syndrome (CIS). There is increasing interest in treating people following a CIS in the hope that conversion to multiple sclerosis (MS) will be prevented and future disability reduced. So far, the prognostic value of MRI for disability following a CIS has not been evaluated systematically. We systematically searched MEDLINE and EMBASE. Cohort studies were selected if they reported associations of MRI and disability following a CIS, included at least 50 people with a CIS at baseline, had at least 5 years of follow‐up and obtained at least one structural MRI measurement (T1 lesions, T2 lesions, T1 contrast‐enhancing lesions or brain atrophy). We assessed the studies for quality and rated the completeness of MRI reporting. In total, 13 studies were identified reporting on the following: T2 lesion number and volume, T2 infratentorial lesion number and volume, T1 contrast‐enhancing lesions and grey matter fraction. T2 brain lesion number determined soon after the occurrence of a CIS was associated with disability progression after 5‐7 years, with an increased risk when 10 or more lesions were present. Infratentorial lesions were also associated with a higher risk of subsequent disability. The number and distribution of MRI‐visible lesions soon after a CIS are associated with disability later on, and may offer additional useful information when making treatment decisions in people with early MS. Further work is required to determine whether other measures have a higher predictive potential.

European Academy of Nursing Science and the Swedish Society of Nursing Summer Conference 2017: The Future Direction of European Nursing and Nursing Research

Osteoporosis is highly prevalent worldwide and is associated with increased risk of low trauma fracture (LTF) [1], increased morbidity and mortality [2]. Major advances in diagnosis, management and BMC Nursing 2017, 16(Suppl 1):32 Page 3 of 11 prevention of secondary fractures have occurred [3] but implications for acute nursing care are less well documented. This project investigated practitioners’ experiences of caring for people with osteoporosis, knowledge of the disease, explored implications for moving and handling, reported patients’ care experiences, and developed education for frontline staff.We welcome all high quality abstracts related to the following three conference themes: Methodological innovations moving beyond the established; Researching nursing interventions moving beyond the “uniqueness” of nursing; Humanitus – returning to the essential principles of clinical nursing care. Online submission opens 16th of August, 2016 on www.swenurse.se Submission deadline is 18th of November, 2016 Call for Abstracts – The 2017 European Conference in Nursing and Nursing Research Fo to : W er n er N ys tr an d

European Academy of Nursing Science and the Swedish Society of Nursing Summer Conference 2017: The Future Direction of European Nursing and Nursing Research: Malmö, Sweden. 04-05 July 2017

Osteoporosis is highly prevalent worldwide and is associated with increased risk of low trauma fracture (LTF) [1], increased morbidity and mortality [2]. Major advances in diagnosis, management and BMC Nursing 2017, 16(Suppl 1):32 Page 3 of 11 prevention of secondary fractures have occurred [3] but implications for acute nursing care are less well documented. This project investigated practitioners’ experiences of caring for people with osteoporosis, knowledge of the disease, explored implications for moving and handling, reported patients’ care experiences, and developed education for frontline staff.We welcome all high quality abstracts related to the following three conference themes: Methodological innovations moving beyond the established; Researching nursing interventions moving beyond the “uniqueness” of nursing; Humanitus – returning to the essential principles of clinical nursing care. Online submission opens 16th of August, 2016 on www.swenurse.se Submission deadline is 18th of November, 2016 Call for Abstracts – The 2017 European Conference in Nursing and Nursing Research Fo to : W er n er N ys tr an d

European Academy of Nursing Science 2016 Summer Conference

Background Nurses have a twofold role in healthcare. On one hand, they provide care to patients who are not able to take care of themselves. On the other hand nurses play a vital role as guardians of patient safety. It is mainly on the second role of nurses that the EU funded RN4CAST project is focusing. Materials and methods Data from more than 33,000 nurses and 11,000 patients in 500 hospitals from 12 European countries were collected from 2009 until 2011. It is one of the largest databases in the world on nurses staffing and its impact on patient safety. Results One of the main results [1] is that an increase in a nurses’ workload by one patient increases the likelihood of an inpatient dying within 30 days of admission by 7%. And every 10% increase in bachelor’s degree nurses is associated with a decrease in this likelihood by 7%. Relating this finding to the human error theory of James Reason, there seem to be a knowledge problem in early detecting of risks and adverse events. Secondly there are some slips and lapses in execution because of a too high workload. As an example, one out of four nurses say that they didn’t have the time to perform proper patient surveillance [2]. Again, this is explained by nurse staffing, education, working environment and non-nursing tasks to be performed. Discussion and conclusions In the follow-up of the report of the Institute of Medicine on “to err is human” [3], the crucial role of nurses in patient safety is highly underestimated [4]. This is mainly because the evidence is recent and mainly based on observational data. But the evidence is growing and consistent and strong evaluated against the Bradford-Hill criteria of causation (1965), showing that mechanisms are well understood, can be replicated across populations and settings and are time and dose-response related. Based on the available evidence, we see that some countries are adapting already their legislation to provide safe nurse staffing ratios to create a safe environment for their patients.

European Academy of Nursing Science 2016 Summer Conference: Halle, Germany. 13-14 July 2016

Background Nurses have a twofold role in healthcare. On one hand, they provide care to patients who are not able to take care of themselves. On the other hand nurses play a vital role as guardians of patient safety. It is mainly on the second role of nurses that the EU funded RN4CAST project is focusing. Materials and methods Data from more than 33,000 nurses and 11,000 patients in 500 hospitals from 12 European countries were collected from 2009 until 2011. It is one of the largest databases in the world on nurses staffing and its impact on patient safety. Results One of the main results [1] is that an increase in a nurses’ workload by one patient increases the likelihood of an inpatient dying within 30 days of admission by 7%. And every 10% increase in bachelor’s degree nurses is associated with a decrease in this likelihood by 7%. Relating this finding to the human error theory of James Reason, there seem to be a knowledge problem in early detecting of risks and adverse events. Secondly there are some slips and lapses in execution because of a too high workload. As an example, one out of four nurses say that they didn’t have the time to perform proper patient surveillance [2]. Again, this is explained by nurse staffing, education, working environment and non-nursing tasks to be performed. Discussion and conclusions In the follow-up of the report of the Institute of Medicine on “to err is human” [3], the crucial role of nurses in patient safety is highly underestimated [4]. This is mainly because the evidence is recent and mainly based on observational data. But the evidence is growing and consistent and strong evaluated against the Bradford-Hill criteria of causation (1965), showing that mechanisms are well understood, can be replicated across populations and settings and are time and dose-response related. Based on the available evidence, we see that some countries are adapting already their legislation to provide safe nurse staffing ratios to create a safe environment for their patients.