Background
Methods
Website development
Study design
Participants
Data collection
Online survey
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socio-demographic and MS-related questionnaires (16 items), such as the 9-item-Patient Determined Disease Steps (PDDS), which asks for the patient-reported walking ability and disability [33]
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15-item process evaluation questionnaire (Additional file 3)
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decisional conflict: 4-item SURE (Sure of myself; Understand information; Risk-benefit ratio; Encouragement) scale [37]
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confidence in active participation and management in medical care: 13-item Patient Activation Measure 13 (PAM13-D) [38]
Telephone interviews and focus group discussions
Interview guide | |
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1. What is your overall impression of the website? - What did you particularly like about the website and why? - What did you particularly not like about the website and why? 2. What is your impression of the design and appearance of the website? - Layout - Colour scheme - Graphical elements - Image and sound quality of the videos and audios 3. What is your impression of the content of the website? - Are the topics in the videos and audios presented in a balanced way? - Is any important topic not represented on the website? - Were there any video or audio clips that irritated you and if so, why? - For what purposes would you use the website? 4. What would you like to see in the further development of the website? 5. Is there anything you would like to add that hasn’t been addressed yet? |
Data analysis
Results
Quantitative results
Sample description
Characteristics | Patients |
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Women, n (%) | 36 (72) |
Age in years, mean (SD) | 48 (13) |
Education, n (%) | |
Primary degree (9 grades) | 3 (6) |
Secondary degree (10 grades) | 12 (24) |
High school degree (12/13 grades) | 35 (70) |
MS diagnosis, n (%) | |
Suspicion of MS | 4 (8) |
MS diagnosis | 46 (92) |
Years with MS since diagnosis, mean (SD) | 12 (10) |
MS type, n (%) | |
Clinically isolated syndrome | 1 (2) |
Relapsing-remitting MS | 34 (68) |
Secondary-progressive MS | 9 (18) |
Primary-progressive MS | 4 (8) |
Unclear | 2 (4) |
Patient determined disease steps (PDDS), mean (SD) | 2 (2) |
Stage of Decision Making in DMT, n (%) | |
Persons haven’t begun to think about the choices | 4 (8) |
Persons haven’t begun to think about the choices, but are interested in doing so | 1 (2) |
Persons are considering the options now | 4 (8) |
Persons are close to selecting an option | 4 (8) |
Persons have already made a decision, but are still willing to reconsider | 17 (34) |
Persons have already made a decision and are unlikely to change their mind | 20 (40) |
eHIQ part 1 sum index score, mean (SD) | 58.2 (18.2) |
1.1 attitudes towards online health information | 52.0 (20.4) |
1.2 attitudes towards sharing health experiences online | 64.3 (19.1) |
Participants from qual. Interview study in development phase, n (%) | 14 (28) |
Navigation, usefulness and satisfaction
Characteristics | Patients |
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Number of logins, n (%) | |
More than 1 time a week, n (%) | 7 (14) |
Once a week at most | 26 (52) |
Once a month at most | 16 (32) |
Spent time (in hours), mean (SD) | 3.2 (4.3) |
Influence of age on choosing a video/audio a, mean (SD) | 3.3 (1.6) |
Influence of sex on choosing a video/audio a, mean (SD) | 4.4 (1.4) |
Themes browsed, n (%) | |
MS diagnosis | 40 (80) |
Disease-modifying therapies | 40 (80) |
Lifestyle measures | 36 (72) |
Rehabilitation | 35 (70) |
Talking about MS with others | 40 (80) |
Family and desire for children | 19 (38) |
Social life | 32 (64) |
Training and work | 27 (54) |
Holiday planning and travelling | 17 (34) |
Constrains and adaptions | 32 (64) |
Coping with MS | 38 (76) |
eHIQ part 2 sum index score, mean (SD) | 70.7 (12.9) |
2.1 confidence and identification | 67.4 (15.1) |
2.2 information and presentation | 81.8 (12.9) |
2.3 understanding and motivation | 62.9 (16.7) |
Grade for the website b, mean (SD) | 2.1 (0.8) |
Helpful in DMT decision-making c, mean (SD) | 2.3 (0.8) |
SURE d, mean (SD) | 4.4 (1.6) |
DSES c, mean (SD) | 83.9 (16.0) |
PrepDM f, mean (SD) | 53.3 (27.1) |
PAM g, mean (SD) | 42.3 (4.5) |
Qualitative results
Web design, appearance and functionality
At present, there is no possibility to leave feedback or comments on the website visible for all users. For a few participants, the existence of a web forum or some other means by which users could contact the protagonists of the website directly (i.e., the persons in the videos and audios) was of interest, as this would provide the opportunity to interact with others sharing similar health conditions.“I perceived the way it was put together very modern, the pictures and the choice of images, all very appropriate.” (person with MS 41)
Content
Experts also discussed the issue of how to handle obviously false information in the narratives and asked if it might be necessary to add a comment with corrections.“I have an acquaintance who also has MS and I directed him towards this. […] He said he wasn’t sure whether he should take a look because most of the clinics are pro-medication and therefore, they promote it. That wasn’t my impression at all. I told him that and he decided he would contact you and take a look at the website. That was super, really good, I thought. You have a section of people there who have opted against a [drug] therapy.” (person with MS 45)
At present, the website only contains experiential information. Some persons with MS asked for links to MS support groups, current research studies and for more detailed information on evidence-based medicine (EbM). Many persons with MS looked forward to the latest patients’ experiences about currently available DMTs or new therapeutic developments (e.g., vaccination against MS, and Covid-19).“If something is misremembered or false information is reproduced, especially on the subject of medication and its active ingredients, I don’t think it would be sufficient clarification to say: “It is possible that some misinterpretations or misunderstandings are contained here that others would regard differently.” […] If it is actually truly wrong, I think it would be better to cut out those parts. […] This could be addressed in the description of the ethical concept of the Website, how care was taken in the videos that if factually misleading information was formulated in the statements, this was taken out. But that otherwise the personal interpretations and evaluations, where there is indeed room for a difference of opinion, were left in.” (expert 2)
Usability
Many found the website easy to navigate and found topics, that they were interested in. However, some also missed certain topics even though they were stored on the website. These illustrate the challenge in designing online information websites, which appeals to all and that the overview of topics and sub-topics could be improved.“I found it easy to navigate, found the layout clear, and I found my way around it with relative ease. You could look for things according to themes or categories and so on. And I found there was clarity here, too. So, really self-evident for someone familiar with searches on the Internet and moving around within it.” (person with MS 12)
Regarding the navigation of the website, users searched for other persons with MS with similar characteristics (e.g., age and sex) and comparable ways of dealing with the disease.“I think that’s a very successful format, because for me the spoken and the visual function conveys a sense of authenticity and makes me feel closer to the person, but with a text in addition for me which I can quickly dip into if I want to work my way through the contents more swiftly.” (person with MS 49)
Persons with MS were reassured by the fact that the website was hosted by a credible research institution with a known reputation. Moreover, patients’ experiences were viewed as honest and authentic information.“Well, I certainly looked for those people of my gender and around my age and who kind of fall into my group […] presuming always that’s where I would find stories similar to my own. Because what is unhelpful for me personally is watching all the catastrophic cases, because I’m not one of them.” (person with MS 12)
Persons with MS valued the possibility to access patients’ experiences anonymously, in contrast to other sources of information such as support groups.“There were very honest reflections, not the producer’s statements, but simply how the individual patients had experienced what was happening with them, why they had stopped taking certain medications and why they had chosen a particular one.” (person with MS 41)
Satisfaction
Gaining emotional support and confidence
“I was really surprised for I actually hadn’t expected so many individual videos. […] I think this is something that the disease needs. It is simply the case that there are so many patients with MS where the disease isn’t visible. […] Life can go on quite normally and that is something that a brochure or a basic website cannot get across. Or only in a theoretical way. I thought the lively, intimate form of the videos was great.” (person with MS 48)
“What I found really strengthening was how a lot of the people weren’t held back at all, so that you really got the feeling that this could all work out quite differently. Most of them made a really positive impression, the way they spoke, not at all in a pessimistic tone, but rather as though everything will be fine.” (person with MS 41)
Support in decision-making
Participants claimed that it was helpful to get an overall picture of the different therapeutic options and how other patients decided for or against a particular DMT. Moreover, one patient, for example, described that she was aware of the fact that the effect of a given medication may vary between her and other people on the website.“When you are feeling your way as a newcomer, you don’t need to be fearful because there are various possibilities […]. The website leaves everything open, and I really appreciated that, and, most of all, it removes the fear. […] If I’d had a website like this back then, I would definitely have taken a slower approach. […] The diagnosis is something life-changing indeed, but at the end of the day it is not a heart attack. No one is forcing you to act immediately. Your website provides the opportunity to weigh things up, but you don’t have to start straight away, and I believe that’s an important message for those affected.” (person with MS 6)
The website also opened the eyes to the fact that DMTs may have substantial side effects and that many patients have to switch their DMTs due to these.“For me personally it will most likely be the case that I seldom or never visit the website, because it depends what phase I’m at. I’ve had the diagnosis for over thirty years now.” (person with MS 49)
“I found it a bit frightening that lots of patients had those kinds of side effects and that lots had switched from their initial therapy; that many had tried out maybe four or five different therapies. I was taken aback by this content, but it belongs there. It is important that it is told the way it is.” (person with MS 45)
Negative patient experiences perceived as astonishing, and distressing
Nevertheless, many participants felt that negative experiences should also be part of the website and that the online format allows to leave the potentially discomforting ‘situation’ by simply clicking on the next video or audio. Moreover, no one perceived the videos as too alarming or shocking.“Yes, there is a lot there about the difficulties, if I can put it like that. […] When people recount: “Yes, I had to give up my profession and now I can only work half the time” and that can have a really demotivating effect. […] But I can only say that from my own observational stance. I do think of course there are people who will feel understood by this, who’ll say: “Oh yes, that’s fine to hear there are others having the same difficulties I’m having, and look, that’s how that person dealt with it.” And so, I can’t really judge whether it will be helpful to a lot of people or not. I wouldn’t be enthusiastic about it, but then you can click out of it quickly enough. That’s the nice thing about this format. If you were in a group situation you would have to wait until the person finished talking and listen to everything they had to say.” (person with MS 1)
Loyalty
“It is a very sensible and serious affair. People aren’t depicted in a lurid way as can happen on some television shows.” (person with MS 58)
Patients wished this website to be accessible more broadly:“I was swept along by it, it’s true. […] Yes, it certainly drew me in, and I really did spend hours in front of it.” (person with MS 8)
“I would be happy if there was targeted publicity for this in the hospitals and at the neurology practices, with flyers and so on. In my case, diagnosis was not so long ago, and my question then was: What is it like? Where do I find information? I did have a little handbook, which contained quite a lot, but not enough. This homepage provides a chance of covering pretty much every aspect and that is what I needed then.” (person with MS 41)
Discussion
Principal findings
Implications for further website development
Hints for the development of websites with patients’ experiences | |
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1. Ensure and guarantee neutrality and independence: if possible, avoid an industrial or private company funding. If there is such a funding, guarantee that the sponsor(s) do not have an influence with regard to content. In this case, multi-sponsorship is also recommended. 2. Ensure and guarantee neutrality of the Internet server provider hosting your website: users will expect not to be tracked und connected with third parties. 3. Chose for the right equipment and check your technical devices for the interviews: good video and audio quality are important for the acceptability and a convenient use of the website’s content. Use common formats for interoperability. 4. Try to be exhaustive in your topics and balance the views: ensure that relevant dimensions of your topic are not missing by developing a theoretical sampling strategy in the very beginning. Include the views of patients in the development of topics. Take care that negative and positive experiences on one topic are not drifting in one direction only. 5. Avoid comments or interjections while the interview partner is speaking: interviewer’s expressions like “oh”, “wow” and “m-hm” will be perceived as distracting later in the video or audio. Endure to say nothing in that situation and instead nod silently. 6. Be nice and fair with your interview partners: get their agreement and do not use interview sequences, which are compromising them. 7. Keep authenticity: your interview partners may express views, which are contradicting with your professional knowledge. There is a justifiable reason why and how the persons came to these views and attitudes. These should be represented on the website. Obviously false or misleading information can be cut out in the videos and audios or commented in an amendment. 8. Detailed planning and documentation of decided actions is the key to a successful collaboration: when cooperating with team members on the website, precise agreement, and documentation, e.g., how the videos and audios are to be edited, is particularly important to achieve a certain consistency regarding the design. 9. Develop a reasonable website structure and navigation: make it easy for the users to find quickly the information they find relevant. Implement search and filter functions. 10. Help the users to find further information on evidence-based knowledge and possibilities for help and support: provide information about the disease and the indications or implement relevant links to other related websites, e.g., patient organizations. Think about creating online-forums, chat rooms and/or personal exchanges between users or provide a link to other websites with such possibilities. |