Information provision for people with multiple sclerosis

TY - JOUR

T1 - Information provision for people with multiple sclerosis

AU - Köpke, Sascha

AU - Solari, Alessandra

AU - Rahn, Anne

AU - Khan, Fary

AU - Heesen, Christoph

AU - Giordano, Andrea

PY - 2018/10/14

Y1 - 2018/10/14

N2 - BACKGROUND: People with multiple sclerosis (MS) are confronted with a number of important uncertainties concerning many aspects of the disease. These include diagnosis, prognosis, disease course, disease-modifying therapies, symptomatic therapies, and non-pharmacological interventions, among others. While people with MS demand adequate information to be able to actively participate in medical decision making and to self manage their disease, it has been shown that patients' disease-related knowledge is poor, therefore guidelines recommend 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. However, only a few information and decision support programmes have been published.OBJECTIVES: The primary objectives of this updated review was to evaluate the effectiveness of information provision interventions for people with MS that aim to promote informed choice and improve patient-relevant outcomes, Further objectives were to evaluate the components and the developmental processes of the complex interventions used, to highlight the quantity and the certainty of the research evidence available, and to set an agenda for future research.SEARCH METHODS: For this update, 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 2017, Issue 11), MEDLINE, Embase, CINAHL, LILACS, PEDro, and clinical trials registries (29 November 2017) as well as other sources. We also searched reference lists of identified articles and contacted trialists.SELECTION CRITERIA: Randomised controlled trials (RCTs), 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: We identified one new RCT (73 participants), which when added to the 10 previously included RCTs resulted in a total of 11 RCTs that met the inclusion criteria and were analysed (1387 participants overall; mean age, range: 31 to 51; percentage women, range: 63% to 100%; percentage relapsing-remitting MS course, range: 45% to 100%). 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 active intervention components included decision aids, decision coaching, educational programmes, self care programmes, and personal interviews with physicians. All studies used one or more components, but the number and extent differed markedly between studies. The studies had a variable risk of bias. We did not perform meta-analyses due to marked clinical heterogeneity. All five studies assessing MS-related knowledge (505 participants; moderate-certainty 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 on decision making (five studies, 793 participants; low-certainty evidence) and quality of life (six studies, 671 participants; low-certainty evidence). No adverse events were detected in the seven studies reporting this outcome.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. The included studies in this review reported no negative side effects of providing disease-related information to people with MS. Interpretation of study results remains challenging due to the marked heterogeneity of interventions and outcome measures.

AB - BACKGROUND: People with multiple sclerosis (MS) are confronted with a number of important uncertainties concerning many aspects of the disease. These include diagnosis, prognosis, disease course, disease-modifying therapies, symptomatic therapies, and non-pharmacological interventions, among others. While people with MS demand adequate information to be able to actively participate in medical decision making and to self manage their disease, it has been shown that patients' disease-related knowledge is poor, therefore guidelines recommend 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. However, only a few information and decision support programmes have been published.OBJECTIVES: The primary objectives of this updated review was to evaluate the effectiveness of information provision interventions for people with MS that aim to promote informed choice and improve patient-relevant outcomes, Further objectives were to evaluate the components and the developmental processes of the complex interventions used, to highlight the quantity and the certainty of the research evidence available, and to set an agenda for future research.SEARCH METHODS: For this update, 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 2017, Issue 11), MEDLINE, Embase, CINAHL, LILACS, PEDro, and clinical trials registries (29 November 2017) as well as other sources. We also searched reference lists of identified articles and contacted trialists.SELECTION CRITERIA: Randomised controlled trials (RCTs), 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: We identified one new RCT (73 participants), which when added to the 10 previously included RCTs resulted in a total of 11 RCTs that met the inclusion criteria and were analysed (1387 participants overall; mean age, range: 31 to 51; percentage women, range: 63% to 100%; percentage relapsing-remitting MS course, range: 45% to 100%). 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 active intervention components included decision aids, decision coaching, educational programmes, self care programmes, and personal interviews with physicians. All studies used one or more components, but the number and extent differed markedly between studies. The studies had a variable risk of bias. We did not perform meta-analyses due to marked clinical heterogeneity. All five studies assessing MS-related knowledge (505 participants; moderate-certainty 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 on decision making (five studies, 793 participants; low-certainty evidence) and quality of life (six studies, 671 participants; low-certainty evidence). No adverse events were detected in the seven studies reporting this outcome.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. The included studies in this review reported no negative side effects of providing disease-related information to people with MS. Interpretation of study results remains challenging due to the marked heterogeneity of interventions and outcome measures.

KW - Journal Article

KW - Review

KW - Decision Making

KW - Multiple Sclerosis/therapy

KW - Humans

KW - Middle Aged

KW - Male

KW - Health Knowledge, Attitudes, Practice

KW - Randomized Controlled Trials as Topic

KW - Quality of Life

KW - Adult

KW - Female

KW - Consumer Health Information

KW - Multiple Sclerosis, Relapsing-Remitting/therapy

KW - Patient Education as Topic

U2 - 10.1002/14651858.CD008757.pub3

DO - 10.1002/14651858.CD008757.pub3

M3 - SCORING: Review article

C2 - 30317542

VL - 10

SP - CD008757

JO - COCHRANE DB SYST REV

JF - COCHRANE DB SYST REV

SN - 1469-493X

ER -