Information provision to help people with Multiple Sclerosis make informed decisions

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.

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.

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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.

Search strategy: 

We searched the Cochrane Multiple Sclerosis and Rare Diseases of the Central Nervous System Group Specialised Register which contains trials from CENTRAL (The Cochrane Library 2013, Issue 6), MEDLINE, EMBASE, CINAHL, LILACS, PEDro and clinical trials registries (12 June 2013) as well as other sources. In addition, we searched PsycINFO, trial registries, and reference lists of identified articles. We also contacted trialists.

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.

Data collection and analysis: 

Two review authors independently assessed the retrieved articles for relevance and methodological quality, and extracted data. Critical appraisal of studies addressed the risk of selection bias, performance bias, attrition bias and detection bias. We contacted authors of relevant studies for additional information.

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.

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