Feasibility of a Website and a Hospital-Based Online Portal for Young Adults With Juvenile Idiopathic Arthritis: Views and Experiences of Patients.
BACKGROUND
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.


OBJECTIVE
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.


METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
University Medical Center Utrecht, Department Rheumatology and Clinical Immunology, Utrecht, Netherlands. j.ammerlaan@umcutrecht.nl.
Judy Jw
http://orcid.org/0000-0002-8481-097X
JJ
Ammerlaan
Lieske W
http://orcid.org/0000-0002-1548-0831
LW
Scholtus
Constance Hc
http://orcid.org/0000-0002-7083-3169
CH
Drossaert
Harmieke
http://orcid.org/0000-0003-3300-2101
H
van Os-Medendorp
Berent
http://orcid.org/0000-0001-8488-4816
B
Prakken
Aike A
http://orcid.org/0000-0002-2753-7807
AA
Kruize
Johannes Jw
http://orcid.org/0000-0002-0128-8451
JJ
Bijlsma
digital portal; eHealth applications; feasibility; juvenile idiopathic arthritis; website; young adults