I was recently listening to an MSer, about where they go to get their info about MS.
Many people use the Internet for info....be careful
Do you go to the info sites provided by Pharma companies?
Are they Really the "Devil"?
Do they have an Image problem?
Do you get the best info from your neuro or MS Nurse-the Angel?
This Weekend April 26-27, there is MS life Meeting in Manchester. Maybe you can get the infor from the horses mouth.
There are going to be some Neuros present....
Dr. Coles for Cambridge is there. Will he present their data on the long term follow-up of early MSers on Alemtuzumab?
Do they convert to SPMS?
Maybe ask the question and you may get an answer that you want to know?
Köpke S, Solari A, Khan F, Heesen C, Giordano A.Information provision for people with multiple sclerosis.Cochrane Database Syst Rev. 2014 Apr 21;4:CD008757. [Epub ahead of print]
BACKGROUND:People with multiple sclerosis (MS) are confronted with a number of important uncertainties concerning many aspects of the disease. Among others, these include diagnosis, prognosis, disease course, disease-modifying therapies, symptomatic therapies and non-pharmacological interventions. It has been shown that people with MS demand adequate information to be able to actively participate in medical decision making and to self-manage their disease. On the other hand, it has been found that patients' disease-related knowledge is poor. Therefore, guidelines have recommended clear and concise high-quality information at all stages of the disease. Several studies have outlined communication and information deficits in the care of people with MS and, accordingly, a number of information and decision support programmes have been published.
OBJECTIVES: To evaluate the effectiveness of information provision interventions for people with MS that aim to promote informed choice and improve patient-relevant outcomes.
SELECTION CRITERIA: Randomised controlled trials, cluster randomised controlled trials and quasi-randomised trials comparing information provision for people with MS or suspected MS (intervention groups) with usual care or other types of information provision (control groups) were eligible.
MAIN RESULTS: Ten randomised controlled trials involving a total of 1314 participants met the inclusion criteria and were analysed. The interventions addressed a variety of topics using different approaches for information provision in different settings. Topics included disease-modifying therapy, relapse management, self-care strategies, fatigue management, family planning and general health promotion. The interventions contained decision aids, educational programmes, self-care interventions and personal interviews with physicians. All interventions were complex interventions using more than one active component, but the number and extent of the intervention components differed markedly between studies. The studies had a variable risk of bias. We did not perform meta-analyses due to marked clinical heterogeneity. All four studies assessing MS-related knowledge (524 participants; moderate-quality evidence) detected significant differences between groups as a result of the interventions indicating that information provision may successfully increase participants' knowledge. There were mixed results from four studies reporting effects on decision making (836 participants; low-quality evidence) and from five studies assessing quality of life (605 participants; low-quality evidence). There were no adverse events in the six studies reporting on adverse events.
AUTHORS' CONCLUSIONS: Information provision for people with MS seems to increase disease-related knowledge, with less clear results on decision making and quality of life. There seem to be no negative side effects from informing patients about their disease. Interpretation of study results remains challenging due to the marked heterogeneity of the interventions and outcome measures.
The more information you have, the more you know...NSS
Labels: MS Life