People with multiple sclerosis (MS) are confronted with many uncertainties in all phases of the disease. For example, the significance of a diagnosis for the future disease course remains unclear as up to one third of people will experience a benign disease course with little or even no disability progression. Uncertainty is also present for the effects and adverse effects of pharmacological and non-pharmacological therapies. People with MS want to receive accurate, recent and relevant information in order to make informed choices on all relevant disease-related decisions and also on personal life planning decisions. For this, balanced information is a prerequisite. It has been shown that disease knowledge is poor in people with MS. Therefore, people with MS should receive interventions that provide information on all aspects relevant for them.
We reviewed whether interventions aimed at providing information for people with MS increase knowledge and improve decision making and quality of life in people with MS. We looked for relevant studies in the medical literature in June 2013 and identified 10 studies that involved a total of 1314 participants. The studies evaluated a variety of approaches including the provision of written information or decision aids, educational programmes and personal information. The methodological quality of the studies varied. Topics included disease-modifying therapy, relapse management, self-care strategies, fatigue management, family planning and general health promotion. The four studies assessing the level of knowledge showed that information may successfully increase patients’ knowledge (moderate quality evidence). There were mixed results from four studies reporting on the effects on decision making (low quality evidence) and from five studies assessing quality of life (low quality evidence). As the studies and the interventions used differed markedly, and the quality of the evidence for our outcomes was not high, the results do not allow for a clear conclusion about the effectiveness of information provision interventions for people with MS.

Information provision for people with multiple sclerosis

Background 
Adequate disease and treatment-related risk knowledge of people with Multiple Sclerosis (pwMS) is a prerequisite for informed choices in medical encounters. Previous work showed that MS risk knowledge is low among pwMS and role preferences are different in Italy and Germany.


Objective 
We investigated the level of risk knowledge and role preferences in 8 countries and assessed putative variables associated with risk knowledge.


Methods 
An online-survey was performed based on the Risk knowledge questionnaire for people with relapsing-remitting MS (RIKNO 2.0), the electronic Control Preference Scale (eCPS), and other patient questionnaires. Inclusion criteria of participants were: (1) age ≥18 years, (2) a diagnosis of relapsing-remitting MS (RRMS), (3) being in a decision making process for a disease modifying drug.


Results 
Of 1939 participants from Germany, Italy, the Netherlands, Serbia, Spain and Turkey, 986 (51%) (mean age 38.6 years [range 18–67], 77% women, 7.8 years of disease duration) completed the RIKNO 2.0, with a mean of 41% correct answers. There were less than 50 participants in the UK and Estonia and data were not analysed. Risk knowledge differed across countries (p < 0.001). Variables significantly associated with higher risk knowledge were higher education (p < 0.001), previous experience with disease modifying drugs (p = 0.001), correct answer to a medical data interpretation question (p < 0.001), while higher fear for wheelchair dependency was negatively associated to risk knowledge (p = 0.001).


Conclusion 
MS risk knowledge was overall low and differed across participating countries. These data indicate that information is an unmet need of most pwMS.

/pdf/risk-knowledge-of-people-with-relapsing-remitting-multiple-221fzgnkpg.pdf

Risk knowledge of people with relapsing-remitting multiple sclerosis - Results of an international survey.

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 inclu...

http://journals.sagepub.com/doi/pdf/10.1177/0269215516639734

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

OBJECTIVES People with multiple sclerosis (pwMS) often have magnetic resonance imaging (MRI) examinations. While MRI can help guide MS management, it may be a source of anxiety for pwMS. We aimed to develop and validate a questionnaire on the "EMotions and Attitudes towards MRI" (MRI-EMA). MATERIAL AND METHODS The questionnaire was developed, tested in two samples of pwMS and validated in a sample of n = 457 pwMS using exploratory (EFA) and confirmatory factor analysis (CFA). RESULTS EFA revealed four factors underlying the questionnaire: fear of MRI scan, fear of MRI results, feeling of control over the disease and feeling of competence in the patient-physician encounter. CFA confirmed the model fit. Receiving the MRI results, but not undergoing the procedure was associated with anxiety. Seeing MRI results gave participants a feeling of control over the disease. Only 50% felt competent to discuss MRI findings with their physician. Fear of MRI results was especially high and feeling of competence low in participants with a short disease duration and little MRI experience. CONCLUSION PwMS do not feel competent when discussing the role, MRI plays in their care. Receiving MRI results caused anxiety and provides some pwMS with a-perhaps false-feeling of control over the disease. The MRI-EMA constitutes a new tool for the assessments of pwMS' feelings towards MRI, that can be applied in future research and clinical settings.

/pdf/emotions-towards-magnetic-resonance-imaging-in-people-with-15d1un94wd.pdf

Emotions towards magnetic resonance imaging in people with multiple sclerosis

Background:Multiple sclerosis (MS)-related knowledge is an important evaluation metric for health education interventions However, few MS knowledge assessment tools are currently available for use

Development and psychometric properties of the Multiple Sclerosis Knowledge Assessment Scale: Rasch analysis of a novel tool for evaluating MS knowledge:

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.

Risk Knowledge in Relapsing Multiple Sclerosis (RIKNO 1.0) - Development of an Outcome Instrument for Educational Interventions

Background Risk knowledge is relevant to make informed decisions in multiple sclerosis (MS). The risk knowledge questionnaire for relapsing-remitting MS (RIKNO 1.0) was developed and piloted in Germany. Objective To produce a revised RIKNO 2.0 questionnaire using mixed methodology in a European setting. Methods The questionnaire was translated in seven languages. MS patient and health professional (HP) expert feedback was obtained from Germany, Italy, Estonia, Serbia, and the UK. A German web-based survey of RIKNO 2.0 compared the tool with the MS Knowledge Questionnaire (MSKQ), each one used with two versions (with/without a “don’t know” DN option). Results While RIKNO 2.0 was considered difficult, it was rated as highly educational. One item was reframed, and two new items were added. The web-based German survey (n = 708 completers) showed that the DN version did not increase participation rate and did not produce significantly higher scores. Internal consistency (Cronbach alpha) without SN response was 0.73. RIKNO 2.0 scores showed normality distribution irrespective of the answering format. Item difficulty was high ranging from 0.07 to 0.79. Less than 50% of questions were answered correctly (mean 8.9) compared to 80.4% in the MSKQ (mean 20.1). Higher numeracy competency and education were significantly, albeit weakly, associated to higher scores for both RIKNO 2.0 and MSKQ. Conclusion Including “don’t know” options in knowledge questionnaires does not increase percentage of correct replies. RIKNO 2.0 is a complex questionnaire to be used in an educational context and studies on patient information. The tool is now available in seven languages.

What should a person with relapsing-remitting multiple sclerosis know? - Focus group and survey data of a risk knowledge questionnaire (RIKNO 2.0).

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Risk Knowledge in Relapsing Multiple Sclerosis (RIKNO 1.0) - Development of an Outcome Instrument for Educational Interventions

What should a person with relapsing-remitting multiple sclerosis know? - Focus group and survey data of a risk knowledge questionnaire (RIKNO 2.0).