Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project.

BACKGROUND: People with multiple sclerosis (MS) are increasingly using the Internet in the daily management of their condition. They search for high-quality information in plain language, from independent sources, based on reliable and up-to-date evidence. The Integrating and Deriving Evidence, Experiences and Preferences (IN-DEEP) project in Italy and Australia aimed to provide people with MS and family members with an online source of evidence-based information, starting from their information needs. This paper reports on the Italian project's website. METHODS: Contents, layout and wording were developed with people with MS and pilot-tested. The website was evaluated using an online 29-item questionnaire for ease of language, contents, navigation, and usefulness of information aimed at people with MS, family members and the general population. RESULTS: The website ( http://indeep.istituto-besta.it/) is structured in multiple levels of information. The first topic was interferons-ß for people with relapsing-remitting MS. In all, 433 people responded to the survey (276 people with MS, 68 family members and 89 others). The mean age was 45 years, almost 90% had a high school diploma, about 80% had relapsing-remitting MS, and the median disease duration was seven years. About 90% judged the website clear, understandable, useful, and easy to navigate. Ninety percent of people with MS and family members would recommend it to others. Sixty-two percent reported they felt confident in making decisions on interferons-ß after reading the website. CONCLUSIONS: The model was judged clear and useful. It could be adapted to other topics and diseases. Clinicians may find it useful in their relationship with patients.

What factors influence feeling competent as a parent with multiple sclerosis?

OBJECTIVE: To identify factors that influence the perception parents with multiple sclerosis have of their competence in parenting. METHOD/DESIGN: Subjects were parents of a child with a maximum of 18 years of age recruited through a national multiple sclerosis organization's social media channels. Data on demographic and disease information, mood, coping, quality of life and perceived social support were collected using an anonymous online questionnaire. Univariate and multivariate analyses were performed to assess associations between these variables and subjects' perception of parenting sense of competence. RESULTS: The sample consisted of 285 parents with multiple sclerosis, with a mean age of 41 years and a mean disease duration of 10.4 years. In the multivariate analysis, independent determinants of lower parenting sense of competence were anxiety (p = 0.012), depression (p = 0.001) and dysfunctional coping (p = 0.005). Problem-focused coping (p = 0.029) and higher physical and mental scores on the SF-12 (p = 0.006, p < 0.001, respectively) were related to a higher parenting sense of competence. Higher parent age correlated with a lower sense of parenting competence (p = 0.002). CONCLUSIONS: The perception parents with multiple sclerosis have of their parenting competence was most strongly correlated with mood, coping strategies and health-related quality of life, factors that are potentially modifiable.

Unmet needs influence health-related quality of life in people with multiple sclerosis.

BACKGROUND: People with MS are a heterogeneous population with varying difficulties and needs that are influenced by the individual experience of the disease, symptoms and disease course. The aim of the present study was to identify factors that influence health-related quality of life in a sample of subjects with MS, specifically health and social care-related needs and demographic and disease characteristics. METHODS: Individuals with a definite diagnosis of MS were identified through MS out-patient clinics and local branches of the Italian MS Society. The EQ-5D-3L utility index was used to describe health profiles and as an overall measure of perceived HRQoL. The number of unmet health and social care-related needs was used to describe the impact of unmet needs on HRQoL. Multiple regression analyses were performed using a hierarchical approach. RESULTS: Data was analyzed from 1013 subjects. Overall, 83% of subjects reported at least one health or social care-related need as being unmet and subjects with a higher number of unmet needs had lower HRQoL (p < 0.001). The number of unmet needs was entered at the first step with a statistically significant effect (Cox-Snell R2 0.15, BIC 870.9, AIC 851.2). Clinical variables, included in the second step, contributed significantly to explaining the variability between models (Cox-Snell R2 0.43, BIC 481.0, AIC 446.6), and the addition of socio-demographic factors further accounted for variability (Cox-Snell R2, 0.46, BIC 461.0, AIC 402.0). CONCLUSIONS: The study demonstrated that a higher number of both health and social care-related unmet needs predicted lower HRQoL. The health profile of the sample identified all domains of the EQ-5D-3L as being important in determining HRQoL. Data confirms that unmet needs alone are significantly related to reduced HRQoL, although the multifactorial and complex nature of MS makes it a challenge to identify the combination of aspects that fully predict variability in quality of life.

A survey study comparing young adults with MS and healthy controls on self-esteem, self-efficacy, mood and quality of life.

BACKGROUND: Studies have shown that people with multiple sclerosis (MS) report low levels of self-efficacy and self-esteem, high levels of anxiety and depression and reduced quality of life. The study aims to assess self-esteem, self-efficacy, mood and quality of life in young adults with MS and to compare them to a healthy control group. METHODS: The age range for inclusion in the study was between 18 and 35years of age for both groups. Subjects with MS were recruited through the Italian MS Society. Healthy controls were recruited through social media and from a university undergraduate program. Subjects completed an anonymous online questionnaire combining various scales. Group differences on demographic data were assessed using parametric and non-parametric tests. Analyses of covariance (ANCOVA) were performed to evaluate differences between the two groups on scales of self-perception, mood and quality of life, adjusting for potentially confounding factors. RESULTS: Eighty-nine subjects with MS and 109 HC were included in the analysis. ANCOVA failed to demonstrate statistically significant differences between groups on self-esteem (F=0.11, p=0.743), self-efficacy (F=2.22, p=0.138), mood (anxiety F=0.03, p=0.855; depression F=0.06, p=0.812) and quality of life (F=0.08, p=0.772). CONCLUSIONS: This study demonstrated that young adults with MS and healthy controls have similar levels of self-esteem and self-efficacy and that they do not differ significantly on measures of mood and quality of life, as previously reported.

Web search behavior and information needs of people with multiple sclerosis: focus group study and analysis of online postings.

BACKGROUND: Multiple sclerosis (MS) patients and their family members increasingly seek health information on the Internet. There has been little exploration of how MS patients integrate health information with their needs, preferences, and values for decision making. The INtegrating and Deriving Evidence, Experiences, and Preferences (IN-DEEP) project is a collaboration between Italian and Australian researchers and MS patients, aimed to make high-quality evidence accessible and meaningful to MS patients and families, developing a Web-based resource of evidence-based information starting from their information needs. OBJECTIVE: The objective of this study was to analyze MS patients and their family members' experience about the Web-based health information, to evaluate how they asses this information, and how they integrate health information with personal values. METHODS: We organized 6 focus groups, 3 with MS patients and 3 with family members, in the Northern, Central, and Southern parts of Italy (April-June 2011). They included 40 MS patients aged between 18 and 60, diagnosed as having MS at least 3 months earlier, and 20 family members aged 18 and over, being relatives of a person with at least a 3-months MS diagnosis. The focus groups were audio-recorded and transcribed verbatim (Atlas software, V 6.0). Data were analyzed from a conceptual point of view through a coding system. An online forum was hosted by the Italian MS society on its Web platform to widen the collection of information. Nine questions were posted covering searching behavior, use of Web-based information, truthfulness of Web information. At the end, posts were downloaded and transcribed. RESULTS: Information needs covered a comprehensive communication of diagnosis, prognosis, and adverse events of treatments, MS causes or risk factors, new drugs, practical, and lifestyle-related information. The Internet is considered useful by MS patients, however, at the beginning or in a later stage of the disease a refusal to actively search for information could occur. Participants used to search on the Web before or after their neurologist's visit or when a new therapy was proposed. Social networks are widely used to read others' stories and retrieve information about daily management. A critical issue was the difficulty of recognizing reliable information on the Web. Many sources were used but the neurologist was mostly the final source of treatment decisions. CONCLUSIONS: MS patients used the Internet as a tool to integrate information about the illness. Information needs covered a wide spectrum, the searched topics changed with progression of the disease. Criteria for evaluating Internet accuracy and credibility of information were often lacking or generic. This may limit the empowerment of patients in health care choices.