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To improve knowledge and to encourage active involvement of young adults with juvenile idiopathic arthritis (JIA), an informative website with written and video information and an online portal with access to the personal medical record, self-monitoring, and e-consult functionalities were developed. Before implementing these applications in daily practice, it is important to gain insight into their feasibility in terms of ease of use, perceived usefulness and intention to use.
The aim of this study was to evaluate and to examine the feasibility of the website and the online portal for young adults with JIA.
A qualitative, feasibility study was conducted among the first users: 13 young adults with JIA. After provided access to the website and online portal, patients were interviewed on perceived usefulness, ease of use, and intention to (re)use the applications.
Participants in the study considered the website and online portal as useful and easy-to-use. New medical information and feedback would motivate them to revisit the applications again. On the website, videos showing other young adults, telling how they handle their condition, were found as the most useful. On the portal, access to their medical records was most appreciated: it made the young JIA patients feel in control and it helped them monitor symptoms and disease activity. e-consults were thought to facilitate communication with physicians.
The young adults considered both the website and the online portal as feasible, but they also had valuable suggestions to improve accessibility and use. Based on these findings, a news and event section was added on the website and a direct link was made to a discussion board and social media. To provide and support health information, the website is actively used in daily care. Considering the online portal, the use of self-monitoring tools and e-consult can be stimulated if there is direct linkage to treatment and feedback from the multidisciplinary team. Feasibility testing, before implementing the website and online portal in daily practice, has proven to be a valuable step. Results led to improvements in terms of integration into standard care and topics for further research.
Living with a chronic rheumatic disease is challenging at any age. However, these challenges may be particularly difficult for young adults with juvenile idiopathic arthritis (JIA), since their chronic condition and treatment affect both physical and socio-emotional development [
In general it is believed that eHealth might contribute to self-management, especially for young adults [
In our specialized transition outpatient department, young adults with JIA and their parents receive multidisciplinary care from a pediatrician and a clinical nurse specialist, in order to support the process of acquiring self-management skills and to guarantee a well-coordinated, continuous process of health care between child and adult [
With our secured online portal the young adult has direct access to his medical record; he is enabled to send an e-consult and may use self-monitoring tools including activity diaries and pain questionnaires. These applications were developed in close cooperation with patients to fit the applications to the specific needs and preferences of this group. Therefore, young adults of the Dutch Youth Network of Rheumatology were asked to perform a central role. In interactive workshops, organized by the multidisciplinary team of the transition outpatient clinic, they determined, together with the professionals, the content and structure of the website and portal.
Both applications may be promising to reach young adults with arthritis and to stimulate their self- management behavior, given their access to and high rates of use of the Internet [
A qualitative feasibility study with semistructured, (audiotaped) interviews was conducted among the first users of both eHealth applications in order to explore the views and experiences of the young adult JIA patients with regard to the feasibility outcomes: ease of use, perceived usefulness, and intention to use. These outcomes are part of the technology acceptance model [
Participants were asked to use the applications for three months “as needed”, without specific instructions, and were interviewed just before or after their subsequent visit to the clinic.
Patients diagnosed with JIA, aged between 16 and 25 years old, being able to read and write in Dutch, with access to a home-based computer with Internet were included in the study. Young adults who already participated in the development of the website and/or portal were excluded.
Recruitment took place at the transition outpatient department of the University Medical Center Utrecht, the Netherlands. All patients who visited the transition outpatient department within a period of three months were asked by their pediatrician or rheumatologist to participate in the study. An information letter and informed consent was handed out which they could return by post.
A convenience sample was used: all patients who returned the informed consent within two weeks after their visit were included in this study. Because it was a feasibility study with a qualitative design, we aimed to include at least 12 participants. According to the ethics guidelines of our hospital, the nonexperimental and noninvasive nature of this study made ethical approval unnecessary.
The website and online portal are designed to improve knowledge, self-management skills, and involvement in treatment and care. The website (in Dutch) [
For an impression of home page of the Dutch website, see
The portal (in Dutch) [
For additional general disease information patients are referred to the website [
The content of website and portal are outlined in
Content of website and portal.
Website, portal | Content | |
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Transition | What is transition? |
Practical information about the departments, multidisciplinary team | ||
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About JIA | What is JIA? |
Treatment | ||
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Leisure | Exercise and sports |
Alcohol and drugs | ||
Holidays/vacation | ||
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Love, sex, and kids | Parents and friends |
Sex and intimacy | ||
Having kids | ||
Contraception, pregnancy, and heredity | ||
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Feeling blue | Having a rheumatic disease |
Feeling tired or having pain | ||
Relaxation | ||
Feeling depressed | ||
Adherence and treatment advices | ||
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School, work, and money | School |
Work | ||
Social insurance | ||
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Medical record | Appointments |
Laboratory results | ||
Written reports of physicians | ||
Actual medication | ||
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e-Consult | Sending and receiving e-consults |
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Online self-monitoring | Medication diary |
Diary on fatigue | ||
Pain score | ||
Activities |
Homepage of the Dutch website.
Portal and e-consult tool.
First, participants were asked to complete a brief questionnaire on demographics, illness characteristics, and their general Internet use. Subsequently, a semistructured interview was conducted at the transition outpatient department in a separate, quiet room, by a young independent interviewer (LWS), who was not involved in the care of the young adult.
The first part of the interview was directed at the informative website; in the second part patients’ opinions and experiences about the portal were assessed. For both applications, open-ended questions, deriving from TAM were used to get insight into ease of use, perceived usefulness, and intention to (re)use (see
Interview questions on feasibility of the website and portal.
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Interview questions |
Use | Have you visited the site/portal? |
Did you visit the site/portal with a specific reason? | |
Which parts did you visit? | |
Perceived ease of use | Did you experience any difficulties in use of the site/portal? |
Perceived usefulness |
How useful is the site/ portal for you? |
Which parts are most/ least useful? | |
Can you describe any benefits, or drawbacks? | |
What are the most and least appealing parts? | |
Do you miss anything? | |
Intention to use | Would you visit the site/portal again? |
Would you recommend the site/portal to others? |
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Suggestions | Do you have any suggestions for improvement? |
All interviews were audiotaped. Field notes were made immediately after the interview to record the interviewer’s impression of the responses to the questions and comfort level of the participants with the interview process. An interview lasted between 30 and 45 minutes.
All interviews were transcribed verbatim. A generic qualitative approach was used for data analysis, including coding, constant comparison, and categorizing. Data collection and analysis were handled as an iterative process [
Thirty-eight eligible patients received an information letter and informed consent. Patients (n=19) who returned a signed informed consent were included in the study. No information is available from the other 19 patients who did not respond to the invitation to participate in the study. Six patients dropped out after giving their informed consent, with reasons of exacerbation of illness, vacation, and too busy with school. Finally, 13 participants received the URL address of the website and a log-in code for the portal.
The mean age of the sample was 20 years (range: 17-22 years) and consisted of 12 women and 1 man. Most of the participants (n=12) were being treated by a rheumatologist. The mean duration of illness was 8years (range: 2-20 years). Of the 13 participants, 11 were in high school, and two participants were gainfully employed. They all used the Internet on a daily basis, most participants (n=10) with an average of over two hours a day.
Of the 13 patients, 12 indicated having visited the website several times. One participant visited the website only once. During their visits, all participants had read at least a part of the written information. Most (n=11) had seen one or more videos and read written life stories. The primary reason for (re)visiting the website was curiosity. Other reasons included searching for specific information or for experiences of other patients.
Participants did not experience barriers visiting the website. Two participants had issues with loading a video, in retrospect due to their own computer and Internet connection.
Participants appreciated the website and graded it with a 7.6 (min 6.5, max 9.5) on a scale from 1 to 10. They found the design of the website appealing and the information practical, clear, easy to read, and well-targeted to young adults.
This really is for younger people. I sometimes look at the SLE site but that is mostly for people who are 40, 50 and 60 years of age and their problems. That is not really my cup of tea. This really reveals itself to be more for younger ones.
Of all the elements, the videos and life stories were thought to be the best. They enabled recognition and showed new ways to deal with solving problems related to the condition. Patients experienced support and recognition in these stories.
I sometimes think that I am the only one with arthritis. There aren’t many with the same problems. Other people don’t understand this; they don’t see anything on the outside. It is nice to hear people of the same age talking about this problem. That is what I have too! You won’t have to say it yourself; somebody else says it for you and I feel the same things.
It really helped me, especially how to cope with fatigue and pain and how to solve it.
You can hear and read the experiences from others, things they had to cope with, how they dealt with them. Often you can learn from their experiences, because you recognize them.
All five themes (in
Some young adults missed detailed information on new developments in medication. Others missed a forum. They thought a link to an existing Dutch discussion board for young adults with JIA and to detailed information about medication on other reliable websites would be valuable supplements.
All participants, except for the youngest, indicated that no or only little new information was added to their knowledge and skills by their visit to the website. Nevertheless, the website was considered useful as a confirmation of what they already knew.
I read that it is important to structure your medication. You have to learn that this is important. Also that before visiting a doctor it’s important to make a list with questions. All things you know but important to read again.
I think I am beyond that age. I was 15 when I got arthritis. I think I would have had more benefit from this between my 15th and 18th. I’m beyond that now. I know what it is; I know how it influences my lifestyle, my alcohol use during the holidays. So I recognize all the subjects but I already have my own opinion about these. It doesn’t add anything for me.
The youngest participant felt she found new and relevant information on the website.
In the hospital, they always talked about JIA. I asked myself: what does that mean? I felt really stupid. I didn’t dare to ask. I read on the website that it was Juvenile Arthritis, my disease.
Finally, participants indicated that the website might be useful for questions of their relatives:
It is very convenient for yourself and your surroundings. My friend sometimes wants to know more and for him it is also a good site to refer to. It is clearly explained what the disease is and how to cope with it.
In summary, the website was considered useful for three reasons: (1) to find or re-read information (mostly already known), (2) to help in explaining the disease and its consequences to others, but most importantly, (3) to find recognition, and to see that other young people struggle with similar problems.
Half of the participants intended to revisit the website; the other participants however indicated that they would only revisit the website if new information were added, if news was added or if their personal situation changed. They all recommended the website to other young people with a rheumatic disease.
All participants (n=13) used the portal for a period of two to three months.
Within this relatively short time, access to medical records was used most often, whilst fewer participants used the tools for e-consult (n=4) and four other participants used self-monitoring (n=4).
Most of the participants logged in just after a visit to the hospital. “Curiosity about what the doctor or nurse had written” was the main reason to check their medical record. One participant logged in just before her visit. She wanted to prepare herself and read what was discussed during her last consultation.
The only problem participants reported (n=5) was the log-in code being too long and complex to be remembered, whereas the code could not be changed. Consequently, they used the portal less often than they wanted.
Participants graded the portal with a mean grade of 7.8 (min 7.5, max 8.0) on a scale from 1 to 10, and mentioned several advantages (see
Usefulness of the different parts of the portal, as mentioned by the participants.
Mentioned effects, advantages | Example quote | |
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Feeling more in control | “ |
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Keeping pace with illness activity | “ |
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Reminder tool | “ |
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Being able to share data with others (parents) | “ |
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Easier communication with the hospital | “ |
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Better communication with doctor/nurse | “ |
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Facilitates communication with physician | “ |
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Provides insight into (the course of) the disease | “ |
Four participants used e-consult, and they considered e-consult helpful because of easier and better communication with the hospital. It enabled the participants to think more about the questions and to explain it better.
Most participants could not think of any disadvantages of the portal; although one participant suggested other people might think access to medical data is not safe. One participant indicated that too much information about her health had sometimes overwhelmed her:
The first time I thought I wish I hadn’t read it. That also applies to the website. However it is good to read things about it. It is about you and therefore scary. On the website it is about different people. The portal is very personal.
Participants mentioned various aspects of usefulness which are summarized in
The access to their medical records was considered the best feature of the portal, because it enabled participants to check their appointment, to see all laboratory results, to re-read treatment plans, feeling more in control of their own treatment, but also keeping track of the progression of the illness was expressed. The portal also facilitated sharing these data with their parents.
The opinions on the usefulness of the self-monitoring tools were more diverse. Some participants indicated them as useful to discover why they experience more symptoms at certain times. Others stated that it provides insight into the course of their problems like having pain or being tired.
A few young adults stated that they did not like filling in diaries or monitoring tools and did not want to be too occupied with their condition.
All participants intended to use the portal again, especially for access to their medical records and using e-consult. Some participants were certain they would not use the diaries and monitoring tools; other participants would use these in case of exacerbation of their JIA. Some thought they would use the tools only if their physician asked for it, or their physician would use the information during the consultations.
Participants suggested the portal might be even more attractive if elements were added, including a facility for online appointments, access to x-rays, printing forms for blood collection before the consult, and an overview of physicians and clinical nurse specialists and their consulting hours.
In this study, the first users of an informative website and an online portal with opportunities for e-consult, access to medical records, and tools for self-monitoring were asked to evaluate the feasibility of these applications on ease of use, perceived usefulness and intention to (re)use. Both eHealth applications were found easy-to-use, and the young adults considered them as “clear and understandable” and useful.
On the website, the videos were considered as visually appealing and interactive and as a more pleasant way to learn compared to written information. This appreciation of videos as a source of information was also shown in similar studies in patients with JIA of the same age [
Participants indicated that access to their medical record was the most useful tool of the portal, increasing their feelings of being in control and helping them to monitor their symptoms and disease activity. Similar results are also found in a large study on access and usage of Web-based communication among adult patients with a chronic disease [
Participants in our study expressed the thought that e-consult may lead to easier and better communication with physicians. This result is also reported in other studies on use and acceptance of electronic communication among patients with cancer [
Limitations for this study include participation of only a small group of first users of the applications. Although the sample seems to be representative as to age and illness duration [
With this study we highlighted the importance of conducting feasibility testing prior to implementation of eHealth applications in daily practice. In information science, the involvement of the end-user in the development process of eHealth applications is considered to be a crucial factor for the actual uptake of the applications in daily life [
In this study, we focused on feasibility testing but in the actual development of website and online portal, we collaborated actively with young adults as well. They decided to a large extent the content, layout and structure of both applications, based on their needs and preferences. The positive outcomes of our study may be attributed to this earlier collaboration. The TAM model, used in this study [
Based on the results of this study and the high use and acceptance within the group of young adults, we can conclude that the Internet can be a promising tool to provide health information and improve self-management among young adults with rheumatic diseases. This point is also recognized in other studies of young adults with a chronic disease like HIV [
Also mentioned in the HITAM is the “subjective norm”, indicating that when a HIT (eg, website or portal) is imbedded in social networks, consumers are more likely to have a positive attitude towards acceptance. Based on these assumptions and the results of our study, we linked the website to a discussion board and social media. However, here some concerns have to be expressed. Several studies show that most young adults primarily use the Internet and social media for contact with peers, for home work or for leisure activities [
Further, website and portals are increasingly used in health care, most in addition to usual care. Further research into the consequences of replacing parts of usual face-to-face care by eHealth interventions, including cost-effectiveness, will be needed.
The young adults appreciated both website and online portal as feasible but they also had valuable suggestions to improve accessibility and use. Based on these findings, a news and event section was added on the website and a direct link was made to a discussion board and social media. To provide and support health information, the website is actively used in daily care. As concerns the online portal, the use of self-monitoring tools and e-consult can be stimulated if there is a direct linkage to treatment and feedback from the multidisciplinary team. Feasibility testing, before implementing the website and online portal in daily practice, has proven to be valuable. Results led to improvements in terms of integration in usual care and topics for further research.
juvenile idiopathic arthritis
health information technology acceptance model
technology acceptance model
All young adults who participated in the study are gratefully acknowledged.
This feasibility study is supported by a grant from the Dutch Arthritis Foundation.
None declared.