Table 3.

An overview of categories and subcategories from phase 1 semistructured interviews.

Category and subcategory		Content
Life with MSa
	Physical and cognitive limitations	For some participants with more severe disease progression, physical and cognitive symptoms were part of everyday life, whereas other participants primarily experienced severe symptoms during relapses or stressful periods. Physical symptoms included, but were not limited to, decreased walking ability, fine motor skills impairment, visual impairment, and digestive issues. A majority of participants experienced a lack of energy and fatigue and had to ration their resources and avoid unnecessary stress: “[I] try to say no to things that I would have liked to participate in. But where I know that right now my system needs rest.” [Female, 31 years, diagnosed in 2014, ID: 1.5] “If I’m expected to do something. At a certain time, and I’m running late. Then I become desperate. Because... They [legs] just go numb.” [Female, 51 years, diagnosed in 2012, ID: 1.1]
	Disease management in everyday life	The majority of participants with relapse-remitting MS were in disease-modifying treatments. However, participants on disease-modifying drugs often experienced harsh side effects: “Because my experience is that the medication has so many side effect that the quality of life is more affected by the medication than by the MS.” [Female, 63 years, diagnosed in 2001, ID: 1.4] “You’re completely trapped in ‘Should I stay or should I go’. All the time. Because you know that the chemistry in that medication is awful, but on the other hand, you have no idea what happens and a lot happens with this disease all the time, and you’re constantly reminded of it.” [Male, 51 years, diagnosed since 2012, ID: 1.6] Both participants in and without disease-modifying treatments used complementary treatments and lifestyle to relieve symptoms or disease activity and increase emotional well-being. Participants underlined that they considered it their own responsibility to have a good life and cope with the disease. This point of view was mainly expressed by participants who had made active decisions on lifestyle and complementary treatments following the MS diagnosis.
	The social aspect and sharing with others	The majority of participants (12 of 15) had social media accounts and used services such as Facebook and Instagram daily. These accounts were used to stay in contact with family and friends and participate in digital MS patient networks. To other participants, networks and groups on especially social media negatively increased their awareness of the disease. Participants with few MS symptoms found that the groups were too focused on disease, and on the contrary, participants who had been diagnosed for more years found it discouraging when other people with MS had higher functional levels than themselves: “For example. There’s one [Facebook group] that is about exercise and MS. [...] But among the members was someone who was competing in Miss Fitness or something. She worked out constantly. And hard workouts. She worked out like I used to do. And it was just depressing for me. And I felt like that kind of posts weren’t really appropriate for an MS page.” [Female, 43 years, diagnosed in 2014, ID: 1.2]
Use of technology
	Widespread use	All participants used computers and cellphones in everyday life. Of 15 participants, 14 owned and used a smartphone, and most participants had access to both computers and tablets. Smartphone-based technology was considered not only positive for its ability to facilitate easy communication with social network but also negative because of the constant interruptions and the expectation of constantly being online: “But I can sometimes dream about taking my smartphone and conducting a small memorial service for it and say thank you. And then throw a rose on top. But you don’t do something like that, I know. Because all the kids [grandchildren] go calling me on it.” [Male, 70 years, diagnosed since 2004, ID: 1.11] “You just have to see if there’s something, and to see if you’re important. You’re not. I think it has become too much.” [Female, 51 years, diagnosed in 2012, ID: 1.1]
	Preferred design and usability	When participants described apps or Web-based apps they enjoyed using, keywords included the following: simple design, accessibility (preferably with 1-point entry to all needed functions), easy overview, usefulness
	Barriers	While some participants related these preferences to their digital skill level or personal taste, others found it necessary because of their MS. One participant used the term screen clutter to describe digital services that she felt were hard to use. Several participants, mostly among those who had been diagnosed for more years, described problems with small fonts, many colors and ads, and small buttons. One younger participant underlined that despite barriers, she was not interested in aids or special solutions: “The problem is not that there aren’t phones with bigger screens. It’s just because I don’t want to look disabled.” [Female, 41 years, diagnosed in 1997, ID: 1.10]
	Technology as an aid	Participants especially used reminder apps to remember medication, grocery lists, calendar appointments, and general reminders. Two participants used memory game apps with the purpose to prevent cognitive decline. One participant used a spreadsheet to keep track of side effects and disease progression.
Participation and incentives
	Motivation for participation	The main motivation for participation in a digital data collection was to contribute to research. Other motivations included a personal interest in nutrition and lifestyle, weight loss, contributing with own knowledge and experiences to get a more positive perspective on MS, contributing with own experiences and learn more from other people’s experiences, to gain knowledge about yourself, and to find out something useful in cooperation with others: “Because I do research in my disease everyday and learn something new from living with it. [...] And I would like to share my knowledge.” [Female, 63 years, diagnosed in 2001, ID: 1.4] “The biggest motivation would actually be that Now we really managed to make something really good that others can benefit from, and that I have participated in that.” [Female, 41 years, diagnosed in 2002, ID: 1.8] “I think it [diet and nutrition] works for me. And I have no doubts that I have to participate in something like this” [Male, 51 years, diagnosed since 2012, ID: 1.6]
	Expectations to participation	Of 15 participants, 12 stated that they would be interested in participating. Participants who considered nutrition and lifestyle to affect MS were more likely to express the intention to participate in the research project. Although the majority would like to participate, participants’ main concern was related to the complexity and daily time consumption of diet registrations: “I’m wondering if it will be too much of a hassle, and if you’ll get it done [the daily registration].” [Female, 39 years, diagnosed in 2009, ID: 1.12]

^aMS: multiple sclerosis.