| Literature DB >> 24094082 |
Vicky R Breakey1, Ashley V Warias, Danial M Ignas, Meghan White, Victor S Blanchette, Jennifer N Stinson.
Abstract
BACKGROUND: As adolescents with hemophilia approach adulthood, they are expected to assume responsibility for their disease management. A bilingual (English and French) Internet-based self-management program, "Teens Taking Charge: Managing Hemophilia Online," was developed to support adolescents with hemophilia in this transition. This study explored the usability of the website and resulted in refinement of the prototype.Entities:
Mesh:
Year: 2013 PMID: 24094082 PMCID: PMC3856537 DOI: 10.1186/1472-6947-13-113
Source DB: PubMed Journal: BMC Med Inform Decis Mak ISSN: 1472-6947 Impact factor: 2.796
Figure 1Examples of interactive content found on the website. Left: An animation illustrating blood clotting and the role of factor replacement therapy. Right: An animation using an analogy comparing inhibitors to defensive football players.
The eight content modules of the website
| About the Program | |
| The Basics of Hemophilia | |
| Hemophilia Management | |
| Managing Bleeds | |
| Complications of Hemophilia | |
| Hemophilia: Mind and Body | |
| Transition of Care | |
| Looking Ahead |
Standardized questions asked of participants at the interview close
| What was your overall impression of “Teens Taking Charge: Managing Hemophilia” online? | |
| a. What is your impression of “the look” of the site? | |
| a. What did you think about the animations? Illustrations? Videos? | |
| a. How easy was it to use/navigate? | |
| What did you like about the website? | |
| a. Why? | |
| What do you think could be improved? | |
| b. How could this/these things be improved? | |
| Did you think there was anything missing from the website? | |
| c. How could we better address this area? | |
Demographic and health characteristics of adolescents from iterative cycles 1–4
| | | | | ||
| A | 1 (25%) | 4 (100%) | 2 (50%) | 5 (83%) | |
| B | 2 (50%) | | 2 (50%) | | |
| Unsure | 1 (25%) | | | 1 (17%) | |
| | | | | ||
| Mild | 2 (50%) | | 1 (25%) | | |
| Moderate | | 1 (25%) | 1 (25%) | 1 (17%) | |
| Severe | 2 (50%) | 3 (75%) | 2 (50%) | 5 (83%) | |
| 2 (50%) | 4 (100%) | 2 (50%) | 6 (100%) | ||
| | | | | ||
| 13 | | 1 (25%) | 1 (25%) | | |
| 14 | 2 (50%) | 1 (25%) | 1 (25%) | | |
| 15 | | | | 1 (17%) | |
| 16 | 1 (25%) | | 1 (25%) | 3 (50%) | |
| 17 | 1 (25%) | 2 (50%) | 1 (25%) | 2 (33%) | |
| 18 | | | | | |
| | 2 (50%) | | | ||
| 7–8 | 1–2 | ||||
| 9–12 | 3–5 | 4 (100%) | 2 (50%) | 4 (100%) | 6 (100%) |
| >12 | CEGEP | ||||
Computer and Internet use by adolescents from iterative cycles 1–4
| | | | | |
| Yes | 4 (100%) | 4 (100%) | 4 (100%) | 6 (100%) |
| No | | | | |
| | | | | |
| Yes | 4 (100%) | 4 (100%) | 4 (100%) | 6 (100%) |
| No | | | | |
| | | | | |
| Yes | 4 (100%) | 3 (75%) | 4 (100%) | 6 (100%) |
| No | | 1 (25%) | | |
| | | | | |
| 0 | | | | |
| 1–2 | 1 (25%) | 1 (25%) | 1 (25%) | 1 (17%) |
| 2–3 | | 1 (25%) | | 1 (17%) |
| 3–4 | | | | |
| 4–5 | | 1 (25%) | | 1 (17%) |
| 5–6 | 1 (25%) | | 1 (25%) | |
| 6–7 | | | 1 (25%) | 1 (17%) |
| ≥7 | 2 (50%) | 1 (25%) | 1 (25%) | 2 (33%) |
| | | | | |
| Not at all comfortable | | | | |
| A little comfortable | | | | 1 (17%) |
| Comfortable | 1 (25%) | 1 (25%) | 1 (25%) | 3 (50%) |
| Very comfortable | 3 (75%) | 3 (75%) | 3 (75%) | 2 (33%) |
| | | | | |
| 0 | | | | |
| 1–2 | 1 (25%) | | | 1 (17%) |
| 2–3 | | 2 (50%) | 1 (25%) | 1 (17%) |
| 3–4 | | | 1 (25%) | |
| 4–5 | | | | 1 (17%) |
| 5–6 | 1 (25%) | | 1 (25%) | |
| 6–7 | | | | 1 (17%) |
| >7 | 2 (50%) | 2 (50%) | 1 (25%) | 2 (33%) |
| | | | | |
| Not at all comfortable | | | | |
| A little comfortable | | | | 2 (33%) |
| Comfortable | 1 (25%) | | 1 (25%) | 2 (33%) |
| Very comfortable | 3 (75%) | 4 (100%) | 3 (75%) | 2 (33%) |
Summary of problems cited by participants and subsequent changes implemented
| | ||
| A Venn diagram (Figure | The Venn diagram was re-tested in the second iteration to better identify the nature of users’ confusion. | |
| Two users found the background colouring of the “History of Hemophilia” animation too dark and had difficulty understanding how to move through the animation. Users also suggested the animation be enlarged. | The background colouring of the “History of Hemophilia” animation was lightened and instructions for use were included (Figure | |
| Text explaining hemostasis, through an analogy to road repair, was found difficult to follow by users. | The text was reproduced as a table (Figure | |
| Author credentials listed at the bottom of each web page were not understood by participants. | Credentials were replaced with a brief lay sentence explaining each author’s professional role. | |
| Two users sought a control to enlarge video size. | The content management system did not support enlarged video. | |
| All participants experienced difficulty navigating between modules and returning to the website’s home page. | Text in the navigation menu was modified to change colour when clicked upon. A “home” button was added to the navigation menu. | |
| Two users were unfamiliar with the mnemonic RICE, which was used as a caption for an image depicting bleed management. | The mnemonic was re-tested in the second iteration to determine whether a higher proportion of users were unfamiliar with its meaning. | |
| To emphasize the fragility of the synovial capsule, an analogy to a water balloon was made. Two users did not understand the analogy. | A caption explaining the purpose of the analogy was included below a side-by-side image of a synovial capsule and water balloon. | |
| | ||
| An image illustrating the X-linked inheritance pattern of hemophilia (Figure | Maternal and paternal chromosomes were differentially coloured to illustrate that offspring derive one sex chromosome from each parent (Figure | |
| The Venn diagram (Figure | The Venn diagram was broken down into multiple figures to first illustrate the symptoms of joint bleeds and arthritis as distinct sets, and then depict their joining (Figure | |
| Users continued to find the background colouring of the “History of Hemophilia” animation inadequate. | The “History of Hemophilia” animation was re-tested in the third iteration to expand upon user suggestions for improvement. | |
| Two additional users were unfamiliar with the mnemonic RICE. Users familiar with the mnemonic also expressed confusion as to the meaning of the letter “I” ( | RICE was modified to RI2CE, to account for the dual-meaning of “I”. The meaning of each letter was described in individual paragraphs of text. | |
| Users continued to find the background colouring of the “History of Hemophilia” animation inadequate. | Bright pictorial icons were added to improve the colour contrast of the animation (Figure | |
| Three participants found the colouring of the videos too dark. | Budget constraints prevented aesthetic modifications to the videos. | |
| An English adage used on the site to help explain prophylactic factor use (Figure | Despite this nuance, French adolescents understood the content conveyed by the analogy, making modification unnecessary. |
Summary of user comments by theme
| “I like how [the pictures] have the sort of comic bubbles to them…that part really stands out for me (age 16).” | |
| “Like the video was like of dark like a guy walking at night and really like really very dark like just the image is not what they’re saying…like it set not the right tone for the video cause it’s about adaptation (age 17).” | |
| “It’s the first time I have seen videos on a hemophilia website (age 17).” | |
| “I thought it was pretty cool because they they had patients interviewed so you could kind of relate better to that (age 14).” | |
| “The animations are great, like the one about pain. You can really see what is going on (age 16).” | |
| “[The timeline] looks very black right now…If you got a bigger timeline um that took up more space on the page um we could add maybe a bit more color cause I mean it’s just black and black’s a plain color too right (age 17).” | |
| “Until you told me I actually didn’t know cause I was looking at the timeline and the mouse see it move from left to right or whatever (age 17).” | |
| “…kids younger might understand a lot better you know seeing the roads, how it relates to the blood vessels (age 17).” | |
| “It is a little too much text, but it is ok…I would read it because I want to know (age 16).” | |
| “I think it really has everything (age 16).” | |
| “[It] gets into like lots of detail so if there is like any questions on your mind then there’s probably a subtitle for it that you can go and research on it or read about it (age 17).” | |
| “Most of the stuff that’s on the other websites…I call it like a bird’s eye view, like some else’s point of view looking in, but this [website] is like the teens, the parents, the doctors, everyone getting their [in]corporations…they’re like all voicing their opinion and stuff like that and you can see different point of views so it’s helpful (age 17).” | |
| “Somebody I know did this and I trust it more than just some other site that I just click on off Google or something. I know that actually actual people made this (age 16).” | |
| “[I like] how these [names] aren’t in bold cause on most sites the names of the people on it are like bold. These are just sort of there so that if they are like looking for it, you can find it but not really like standing out (age 16).” | |
| “That [forum] would improve it…like a lot (age 13).” | |
| “[You can] connect with other hemophiliacs (age 13)” | |
| “If you want to ask a question but you can’t ask everybody…[then] you don’t have to tell who you are and where you live (age 16).” | |
| “It gives me a lot more knowledge than I knew before… I probably would go home and go on the site, even after the study is done…because there’s some headings and some subtitles like that I haven’t seen before or like I’d like to know more in depth about (age 17).” | |
| “[Teachers] can come here and easily read it or look at it in detail (age 17).” | |
| “I thought it was very very well done – it was appealing the pictures and the videos and… always kept me intrigued…I like how it just put the information out there and you could just, you know, read and learn more about it (age 13).” | |
| “Most sites aren’t really like this…it would be a lot easier to understand if I had a website like this to look at (age 16).” | |
| “When I was young I would come to the hospital all the time and whatever and the nurses would be talking and then sometimes you know when people are speaking and you just nod your head and you’re just like yeah yeah yeah yes and then you don’t really understand?… it’s helpful because I guess next time or the times when you’re reading it you hear the word and it clicks in your head [you think] oh yeah back to [the website] (age 17).” |
Figure 2Venn diagram before usability testing. Graphic on the website illustrating the symptoms of arthritis and internal joint bleeds before usability testing was undertaken.
Figure 3Venn diagram after usability testing. Following the first iteration of testing, three consecutive images were created to replace the previously single Venn diagram. Users found that these images more clearly conveyed the similarities and differences between arthritis and internal joint bleeds.
Figure 4Image illustrating the heredity of hemophilia before usability testing.
Figure 5Image illustrating the heredity of hemophilia after usability testing. Following the first cycle of testing, maternal and paternal chromosomes were differentiated by color to demonstrate that offspring derive one sex chromosome from each parent.
Figure 6History of hemophilia timeline animation after iteration 1. Instructions were provided with the timeline to improve ease of use.
Figure 7History of hemophilia timeline animation after iteration 3. Pictorial icons were inserted to improve ease of use and appeal.
Road repair analogy used to explain hemostasis
| Blood vessels | Roads |
| Blood vessels wall | Road surface |
| Blood flow | Traffic flow |
| Platelets | Construction workers |
| Clotting factors | Road patch |
| Chemical signals | Radio communication used by construction workers. They use radios signals to request for materials needed to fix the damaged road. |
| Fibrin | Fibrin |
Figure 8“An apple a day keeps the bleed away”. Analogy on the website using the English adage “An apple a day keeps the doctor away” to explain prophylactic therapy. One adolescent identified that this was not a familiar adage in the French language during usability testing.