Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health (original) (raw)
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interactive Journal of Medical Research, 2014
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.
Information-Seeking Strategies of People with Multiple Sclerosis in Spain: The INFOSEEK-MS Study
Patient Preference and Adherence, 2022
Purpose: Patients with multiple sclerosis (MS) are increasingly demanding access to reliable information regarding their disease. The objective of the INFOSEEK-MS study was to assess what are the strategies people with MS use when searching for information on their disease, including sources, frequency, reliability, and preferred content. Patients and Methods: A non-interventional, cross-sectional study was conducted. Patients with a diagnosis of MS according to the 2010 McDonald criteria were included. The InfoSeek questionnaire was used to assess patients' strategies when seeking information about the disease. Clinical characteristics and other variables, including disability, quality of life, fatigue, cognition, anxiety and depression, were analysed using the Expanded Disability Status Scale (EDSS), Multiple Sclerosis Impact Scale (MSIS-29), 5-item Modified Fatigue Scale (MFIS-5), Symbol Digit Modalities Test (SDMT), and Hospital Anxiety and Depression Scale (HADS), respectively. Results: Three hundred and two patients were studied (mean age: 42.3 ± 10 years, 64% female, mean disease duration: 9.6 ± 7.0 years, 90% with relapsing-remitting MS, and mean EDSS score: 2.6 ± 1.9). The internet (either via mobile or computer) is a frequently reported source of information. Lifestyle-related information (67.2%), research and emerging treatments (63.6%), symptom control (49.7%), sharing experiences with other patients (46.4%), and disease prognosis (46.4%) were the most searched topics. Neurologists and nurses were the most trusted source of information. Younger patients and higher SDMT scores were associated with all search resources (M = 37.7 and M = 49.97, respectively). The frequency of searches was related to the number of relapses (R 2 = 0.07), EDSS (R 2 = 0.14), MSIS-29 physical and psychological components (R 2 = 0.132) and inversely with depression (R 2 = 0.132). Conclusion: Although healthcare professionals are considered the most reliable source of information for people with MS, searching for information on the Internet is very frequent. An individualized information strategy considering the different factors involved is needed.
Why Patients Go Online: Multiple Sclerosis, the Internet, and Physician-Patient Communication
The online information seeking of multiple sclerosis (MS) patients, their reasons for doing so, and its importance for physician-patient communication have not been described. Methods: Patients (n ϭ 61) presenting for the first time at an MS clinic from December 2003 to July 2005 were interviewed pre-and postappointment and administered standard measures of pain and health quality of life. Consultations were audio recorded. Quantitative data were analyzed in light of qualitative data. Results: Eighty-two percent of patients reported gathering medical information online before their first appointment; 36% discussed this information with their physician. Qualitative reasons for Internet information seeking and for not communicating it show some signs of wariness of health care potentially leading to nonadherence. Conclusions: Most MS patients are informed by online information, but are unlikely to discuss that research with physicians for reasons that may have implications for patient adherence.
Health Science Reports, 2018
Background and Aims: In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS. Methods: A 2-phase mixed-methods project, conducted in partnership with consumers and an MS organisation. Phase 1 included review panels with consumers (Australians affected by MS) and health professionals to test paper-based treatment summaries before development, and pilot testing of the website. Phase 2 involved an online survey after website launch. Results: Eighty-three participants (85% affected by MS) took part. Phase 1 participants strongly endorsed key review summary components, including layering information, and additional sections to aid personal applicability. Participants additionally suggested questions for health professionals. Participants across both phases were receptive to the idea of being provided with Cochrane Review summaries online but were seeking other types of evidence and information, such as personal experiences and the latest experimental treatments, which could not be provided. While the small survey sample size (n = 58) limits application of the results to a broader population, the website was viewed favourably, as a useful, understandable, and trustworthy information source. Conclusion: We describe a partnership approach to developing online evidence-based treatment information, underpinned by an in-depth understanding of consumers' information needs.
Journal of Vocational …, 2009
Being well-informed about multiple sclerosis (MS) and its treatment is associated with a number of positive clinical and psychosocial outcomes, including higher levels of quality of life and personal control, better coping and adjustment after diagnosis, and reduced dependence on health providers. Understanding the sources from which people with MS seek information is important in assuring that timely, accurate, and useful information is available in a medium and format that is accessible. The purpose of this study was to explore the information seeking behavior of people with MS and to analyze the extent to which information source was associated with personal, demographic, and illness variables. A sample of 409 adults with MS recruited through the National Multiple Sclerosis Society (NMSS) completed questionnaires about their primary source of MS information and demographic and illness characteristics. Descriptive statistics, logistic regression, and bivariate correlation analyses were applied to the data to identify the most frequently utilized sources of MS information and examine relationships between information source and to personal, demographic, and illness variables. The most frequently identified sources of information about MS and its treatment was physicians or neurologists, followed by the Internet. Age was an important variable in distinguishing the primary information source between groups. Generally, younger patients are more likely to obtain MS information primarily through the Internet while older patients obtain information primarily through their neurologist. This study provides information useful in effectively targeting MS information and understanding how persons with MS access information, Further research is needed to understand differences in the quality, quantity, and sources of MS information available, the extent to which differences in sources of MS information may affect patients' decisions about their treatment, and how individual variables may affect patients' ability to access, understand, and remember educational material.
BMC Neurology, 2022
Background: A variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regarding disease-modifying therapies. In addition to factual information, reports of patient experiences may support other patients in their decision-making. Therefore, we developed a website presenting patient experiences illustrated by video, audio and text files. This study aimed to test the acceptability and usability of a website with patient experiences with MS. Methods: A mixed-methods approach was applied. A total of 69 participants visited the German "Patient Experiences with MS (PExMS)" website and among them, 50 persons with MS and 6 experts completed an online survey. In total, 18 participants took part in telephone interviews or focus groups. Data from the survey were analysed using descriptive statistics. Qualitative data were analysed using thematic analysis. Results: Both quantitative and qualitative responses suggest that the PExMS website was viewed positively by patients and experts. 94% of persons with MS agreed that the information was comprehensible and reliable. 54% felt encouraged to share their health problems with others after having studied the website. 74% claimed to use the website if they had to make a decision regarding their health. Qualitative responses deduced from the website fell into 5 key themes: (1) web design, appearance, and functionality, (2) content, (3) usability, (4) satisfaction, and (5) loyalty. The search for persons of similar age and with comparable experiences was a major driving force to navigate the website. The material on the website was perceived as diverse, covering both positive and negative experiences in daily living with MS. All participants greatly appreciated having access to other people's experiences online and judged the material on the website as particularly helpful in decision-making for disease-modifying therapies. Conclusions: The findings suggest that the PExMS website might have the potential to be a useful source of audiovisual information for persons with MS. Given the lack of websites available to patients with experiential information, health care professionals may be encouraged to routinely inform patients about this website at regular appointments.
Information Provision and Quality. A Pilot Study on Shared Decision-Making in Multiple Sclerosis
IOS Press eBooks, 2022
The patient as an active participant in decision-making has become an important resource in health care. Shared decision-making (SDM) relies on the patient's easy access to reliable and evidence-based health care information as well as the availability of patient-generated data, such as values and preferences for the health care professional (HCP). The aim of the present pilot study was to evaluate what type of information people with multiple sclerosis (pwMS) use in the SDM process, and what are the sources of that information. A semi-structured web-based survey of SDM was conducted through the MS-society in Finland. The results are presented against the Ottawa Decision Support Framework. A total of 27 pwMS participated. We found that all the participants wished to be involved in the decisionmaking process, but that they seldom found the information provided by HCP to be helpful. Instead, they searched the internet and visited various conversation platforms in social media, such as Facebook groups, for additional information.
Multiple sclerosis: patients' information sources and needs on disease symptoms and management
Patient preference and …, 2010
Objective:To investigate the current information sources of patients with multiple sclerosis (MS) in the early stages of their disease and to identify patients’ preferred source of information. The relative amounts of information from the different sources were also compared.Methods:Participants at a newly diagnosed information session organized by the Multiple Sclerosis Society of South Australia were invited to complete a questionnaire. Participants were asked to rate on a visual analog scale how much information they had received about MS and optic neuritis from different information sources and how much information they would like to receive from each of the sources.Results:A close to ideal amount of information is being provided by the MS society and MS specialist nurses. There is a clear deficit between what information patients are currently receiving and the amount of information they actually want from various sources. Patients wish to receive significantly more information from treating general practitioners, eye specialists, neurologists, and education sessions. Patients have identified less than adequate information received on optic neuritis from all sources.Conclusion:This study noted a clear information deficit regarding MS from all sources. This information deficit is more pronounced in relation to optic neuritis and needs to be addressed in the future.Practice implications:More patient information and counselling needs to be provided to MS patients even at early stages of their disease, especially in relation to management of disease relapse.