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

"I think there are too many confusing things on the Internet. I don’t know how much to trust of the information that I find. I need true, easy-to understand health information that is useful to meet my needs". (A person with multiple sclerosis participating in the IN-DEEP focus group)

People with multiple sclerosis (MS) are mainly young adults, who are increasingly using the Internet for MS-related information. While neurologists or general practitioners remain the principal or at least the most trusted source of information for most people, the Internet is often used to supplement their advice. People with MS use the Internet to search for health information, stay abreast of research, check claims to treatment benefits and adverse effects reported in the media and social networks [1‐3].

A search on Google® (in English) in June, 5th 2015 using the search term “multiple sclerosis” retrieved 23.4 million links. From this huge amount of information, people need to know how to assess the relevance of the information and how it relates to them personally [4‐6]. In a recent study exploring the online health information needs and barriers for people with chronic health conditions, participants complained of differences in the information from different online sources as a recurrent difficulty, and stated their desire for health professionals to play a role in guiding them to find relevant and reliable online health information [7]. For people with MS to self-manage their condition, information has to be of high quality, in plain language, from independent sources, and based on reliable and up-to-date evidence [1, 8‐11].

The Integrating and Deriving Evidence, Experiences and Preferences (IN-DEEP) project is an Italian-Australian collaboration developing two parallel projects to explore how people with MS integrate health information they find on the Internet with their needs, experiences, preferences and values, and how these factors could be incorporated into an online source of evidence-based information that was accessible and meaningful to them and to family members of people with MS [12]. It is an informational intervention aimed to provide qualified information through the web, to support the decision-making of people with MS with clinicians. A four-stage process was used: first, health information needs were assessed through focus groups with people with MS and family members led by a psychologist [13, 14]; second, a template was developed presenting evidence-based health information; third, the template was implemented on the web and fourth, an online survey was conducted to assess this web-based resource (Fig. 1).

Most of the people with MS and family members who were involved in the focus groups during the first phase of the Italian IN-DEEP project [13] reported difficulty navigating through the mass of Internet data, in understanding and evaluating quality and reliability of web information. They said that web information often does not cover their information needs or is inappropriate. There was a general perception that good quality independent web information is lacking. Even so, participants concluded that the Internet was useful for people with MS. Their information needs covered comprehensive communication of diagnosis, prognosis, benefit and adverse events of treatments, and new drugs, gradually changing over the course of the disease.

As reported in the literature, informational interventions aimed at improving health literacy, in conjunction with medical advice, can improve people’s knowledge, symptom management and treatment adherence, reduce anxiety, and increase a sense of empowerment. In particular, websites have beneficial effects on self-efficacy and health behavior [15].

This paper describes the development of the Italian IN-DEEP website and its assessment through an online survey.

The project was a collaboration between the Cochrane Multiple Sclerosis Group - Fondazione IRCCS Istituto Neurologico “Carlo Besta”, Milan, IRCCS- Istituto di Ricerche Farmacologiche “Mario Negri” Milan, the Centre for Health Communication and Participation, La Trobe University, Melbourne, and Italian and Australian MS societies. It was approved by the Faculty of Health Sciences Human Research Ethics Committee of La Trobe University, Australia, and the Ethics Committee of the Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.

The project’s advisory committee included neurologists, people with MS, experts in health literacy and communication and representatives of the Italian MS society. All the phases of the project were discussed and shared with the advisory committee.

The IN-DEEP website is shaped on the needs and feedback of people with MS and family members and is structured in multiple levels of depth so the reader can decide how much and what kind of information to read. It represents an information model that fosters an active role for people with MS and family members in searching for information to make healthcare decisions. The principles of this model are summarized as follows: developing the structure and contents starting from the needs of people with MS; providing multiple-level evidence-based information with words, numbers and pictures; citing the sources and describing their quality; presenting methodological information and tools to critically appraise health information; presenting tools to apply the information to the personal condition of the reader, including personal stories. Most of these principles reflect the criteria for an evidence-based information for patients reported in the literature [16].

As reported in a recent Cochrane review [29], informational interventions for people with MS are various, cover different topics with various approaches and outcomes. They seem to increase the knowledge of people with MS about topics related to the disease, without conclusive results on decision making and quality of life. We assessed the IN-DEEP website in terms of comprehensibility and usefulness, asking people with MS if they would have used it in making decisions and if it responded to their needs. Most respondents judged it clear and useful. The overall sample reported positive judgments, with almost always at least 80 % of high and very high and no more than 5 % of low and very low opinions. The majority reported they would recommend the IN-DEEP website to others, but a few found it less useful to make decisions. One reason could be that some topics were not covered. People with MS asked for plain information about drug comparisons, new treatments and diagnostic test results, not yet covered by the IN-DEEP website. The other reason could be that respondents rely on the neurologist to make decisions related to therapies. Free-text comments included, “the decision about interferon treatment is made by the neurologist. It is a proposal which patients can complain about: medical expertise is different from information”; and “for this kind of delicate decision I prefer to trust the judgment of the neurologist, within a good doctor-patient relationship based on trust”. The relationship with a trusted neurologist is the first reference point for decisions. This is in line with the findings of an Italian study about the attitudes of people with MS towards medical decision making in clinical setting, showing that the majority of people involved preferred a collaborative role (decision with neurologist), followed by a passive role (decision by neurologist), and finally by an active one (have the last say) [30].

We found in earlier focus groups that patients refer to the web without telling the neurologist when their information needs remain unanswered, either because of the lack of time during a visit or the neurologist’s difficulty in grasping the patients’ requests. A recent study [31] showed that Italian MS physicians need more training on shared decision making skills, to understand patient preferences for reception of information and involvement in health decisions. We suggest that neurologists may find the IN-DEEP website a useful tool to foster a dialogue with patients about the therapy.

We drew together evidence-based MS information with the needs of people with MS: the challenge was to match people with MS’ information needs with the best sources available from research. The mismatch between patients needs and research is well documented [32] and is an issue also in the dissemination of the information. We tried to tackle by it including information from various sources clearly explaining their limits and the related uncertainty. As reported in literature [33], people with MS are not scared by complex evidence-based information showing the uncertainties of data.

Answering the information needs of patients in a situation of uncertainty is a difficult task even for clinicians during the visit. This is why clinicians may find a web-based resource that was developed starting from people with MS’ needs and with their cooperation helpful [33, 34]. Time constraints often limit the amount and kind of information that clinicians provide to patients. A website such as IN-DEEP could be suggested by clinicians as a source of high-quality research about treatment for MS, that is potentially useful also to increase patients’ critical appraisal skills. The application of the IN-DEEP website in this context should be implemented and assessed widening the topics covered.

The IN-DEEP website meets the need of people with MS for good-quality information, and we shall use this model as a basis for developing further topics of relevance to them.

The IN-DEEP web-based model could be adapted to other diseases and conditions, in the framework of collaboration among clinicians, researchers, experts in communication and patient associations.