Table 2 Summary of responses to the Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT) interviews

General

Did you use a computer or tablet or both to access the SPIN-SELF Program?

Can you please tell us about your experience with the SPIN-SELF Program, including things that you liked about the program and things that could be improved?

4 computers, 1 tablet (with occasional computer use).

1 liked the program very much; 1 liked the various areas covered by the program, it gives the user choices on what they want to focus on based on their experience with the disease; 1 learned a lot from the fatigue module (pacing activities); 1 liked the expert and patient videos because they offer different perspectives, could improve length of modules (some are wordy); 1 found the format really easy to use and the information extremely helpful, enjoyed the worksheets but was unable to use them on a tablet.

Process

Did the initial invitation email provide you with the information you needed to understand how to sign up for the study? If no, what information was missing?

5 yes.

Did you find the follow up telephone call you received within 48 hours of the invitation email to be helpful? If no, why not?

5 yes.

Purpose

Did you understand the objective of the SPIN-SELF program? If no, how could the objective be clarified?

5 yes.

Did you find the information provided in the SPIN-SELF program relevant? If no, how could the information provided be made more relevant for you or other scleroderma patients?

4 yes; 1 found the information provided by the module on digestive system and nutrition irrelevant to her gastro-intestinal issues.

Words and language

Did you find that the intervention used common, everyday language that was easy to understand? If no, can you give an example of something or some word(s) that you did not understand?

4 yes; 1 yes, but maybe not for someone who is newly diagnosed.

Did you understand all the medical terms or, if not, were they clearly explained in the SPIN-SELF program? If no, can you give an example of medical term(s) that you did not understand?

4 yes; 1 yes, but might be overwhelming for newly diagnosed.

Content, organization, navigation

Did you find that the SPIN-SELF program is broken down into manageable chunks or sections? If no, which parts of the content weren’t broken down into manageable chunks or sections and how could we improve them?

5 yes.

Did you find the different pages or sections of the program to be clearly indicated? If no, what section(s) could be more clearly labelled?

5 yes.

Did you find it easy to navigate through the intervention and to understand where to go next? If no, how could the different steps to navigate the intervention be more clearly explained?

4 yes; 1 yes, apart from a few times when using a tablet.

Did you consult the “More info” tab (Scleroderma 101, Patient Stories)? If no, why not?

4 yes; 1 no, has had the disease for 30 years so did not find it necessary to consult.

Did you experience any technical difficulties while using the intervention? If yes, what type of technical problems? Did you request assistance from the SPIN team? If you did, was the SPIN team able to help you resolve them?

4 no; 1 technical problems using tablet, spoke with SPIN team during a regular protocol call and they resolved the issue.

Did you use the website tour? If yes, was it helpful to learn to navigate the website? Why or why not?

1 yes, very helpful; 2 yes, but did not really need it/pay attention to it; 2 no.

Did you use the “My bookmarks” feature? If yes, did you find it helpful for easily navigating to the pages you wanted? Why or why not?

4 no; 1 yes, tried on tablet and found it difficult to use.

Learning aids

Did the fact that the intervention was introduced by scleroderma experts and patients make the program more relatable? Why or why not?

2 yes, interesting to hear both perspectives; 1 yes, makes it more credible; 1 yes, for some modules but less for others (digestive system and nutrition); 1 yes.

Did you understand how to correctly use the techniques explained in the modules? If no, what would have helped you better understand how to correctly use the techniques?

5 yes.

Were you able to clearly understand the people speaking in the videos? If no, why couldn’t you understand the words in the videos? (e.g. too fast, too soft, mumbling, accent)? Are there any videos in particular that were more difficult to understand than others? If yes, which one(s)?

Did you look at the video transcripts? If yes, were they helpful? If yes, were the video transcripts helpful to you? Why or why not?

2 yes; 2 yes, videos are clear and easy to understand; 1 didn’t really watch videos

3 no; 1 yes, very helpful; 1 yes, good to have them for more visual people.

Actionability (worksheets, goal-setting, motivation)

Did you use the worksheets? If no, why not? What could have been a better tool?

Did you set goals for yourself using the goal setting material? Why or why not?

3 yes (used them frequently—still uses them; used a couple; used one or two); 2 no.

3 yes (useful reminder; wanted to try it; helpful to achieve goals – although some goals were difficult to follow); 2 no (already has a good routine; does not remember that it was an option).

Did you use the option to share your goals with friends and family via email? If yes, did the option to share your goals with friends and family via email help you stick to your goals? If no, what other motivational feature might have been more helpful?

Did you incorporate the tools and techniques you learned into your planned routine and stick to it?

If No: What were some obstacles you faced when trying to incorporate the tools and techniques into your routine? How could the SPIN-SELF program have helped you to overcome these obstacles?

Did you use the feature to track your progress? If yes, did having the option to track your progress week after week encourage you to continue performing the techniques? If no, why not? Did you use any other way to track your progress? If so, what did you do?

1 yes, important feature to link medical world and family – suggestion to add testimonies of past SPIN-SELF participants who followed the techniques and experienced improvements; 1 no, the program itself is very motivational and positive; 1 no, the usefulness of motivational features depends on the individual; 2 no - no other suggestion.

1 yes, some techniques have really been helpful; 1 yes, although sometimes it was difficult to stick to the routine; 1 no, was already equipped with techniques; 1 no, tried to incorporate some but did not stick to it – main obstacle was the number of medical appointments; 1 no – main obstacle was her habit of not giving herself time to rest and the program being online didn’t make a difference for her.

3 no, other personal ways to keep progress; 1 no, difficulty to use this feature on a tablet; 1 no.

Did you set email reminders for yourself? If yes, did having the option set email reminders for yourself help you incorporate the techniques into your routine? If no, did you use another type of reminder?

1 yes, very helpful; 2 no, did no use any type of reminder; 1 no, used calendar and alarm; 1 no, used a journal.

Overall appreciation

How user-friendly on a 0–10 scale (0, being the worst and 10 being the best possible score) would you rate the SPIN-SELF program?

Would you recommend this program to someone with scleroderma? If no, why?

What grade (on a 0-10 scale, 0 being the worst and 10 being the best possible score) would you give the program?

Is there anything you want to give us feedback about that was not included in this interview?

2 rated 10; 2 rated 8; 1 rated 5 for use on a tablet, but would have rated much higher if had been able to use the program on a computer.

5 yes.

2 rated 10; 1 rated 9; 1 rated 7; 1 rated 6.

2 no; 1 the health care module made a huge different for her and her confidence in tackling the healthcare system; 1 there is a lot of information and would have liked more guidance on what to focus on; 1 sections on finger ulcers and proton pump inhibitors could be included.