Aging with Multiple Sclerosis
Inclusive Universal Design (UD) Guidelines for Mobile User Interfaces
Ljilja Ruzic Kascak and Jon A. Sanford
The Center for Assistive Technology and Environmental Access (CATEA), Georgia Institute of Technology,
490 Tenth Street, Atlanta, GA, U.S.A.
1 RESEARCH PROBLEM
The number of older adults with multiple sclerosis
(MS) is increasing because of the rising life
expectancy of people with MS and the growing
population of older adults (Minden et al., 2004). As
a result, 14% of people with MS are now over the
age of 65 (Minden et al., 2004). However, there is a
lack of MS research targeted to older adults
(Finlayson, 2002).
MS does not reduce life expectancy unless the
disability that results from the disease is severe
(Weinshenker, 1995). Approximately 10% to 15%
of people with MS develop severe disability
(Minden, 1993), which suggests that the vast
majority of will live as long as their age peers
(Finlayson, 2002). Thus, people aging with MS will
deal with changes in life related to aging in addition
to managing disability as a result of MS (Finlayson,
2002).
The most common MS symptoms reported by
older adults are similar to those reported by younger
adults, including pain (Stern, 2005), fatigue,
problems with balance, and weakness (Finlayson,
2002). However, research has shown a significant
individual variability in the relationship between
duration of illness and physical functioning, which
leads to a conclusion that older adults with MS are
more physically disabled than younger adults
(DiLorenzo et al., 2004). In addition, MS has
overlapping symptoms with physical effects of
aging, including decline in muscle strength,
problems with balance, weakness, fatigue, reduced
sensation, vision impairments, alterations in
bowel/bladder function, cognitive impairment (Stern
et al., 2010), osteoporosis and sleep disturbances
(Fleming and Pollak, 2005). In one study, 80% of
people with MS reported that their physical health
limited their daily activities and caused them to
accomplish less than they wanted (Minden et al.,
2004).
To overcome barriers to daily activities that
result from functional limitations and non-supportive
environments, many older adults with MS have
adopted assistive devices (Minden et al. 2004). Use
of assistive devices with proper social supports can
enhance older adults’ perceptions of their degree of
mobility and independence, thus impacting their
overall wellbeing (Finlayson and van Denend,
2003). More recently, many mobile technologies
have been developed that integrate assistive and
information technologies thus providing better
solutions for older adults and people with disabilities
(Harris, 2010). However, many older adults and
those with MS in particular, have many usability
problems with current mobile technologies (Harris,
2010).
Unfortunately, there is a lack of literature on
needs and concerns of people aging with MS
(Finlayson, 2002) to inform the design of mobile
technologies. Moreover, there is a dearth of
literature on the design of user interfaces and
corresponding guidelines for people with MS,
specifically those aging with this mobility-affecting
chronic disease.
Universal design (UD) considers designing
products and interfaces usable by all people, to the
greatest extent possible, “without the need for
adaptation or specialized design” (Mace, 1988). UD
promotes usable design by the greatest number of
people, including older adults and disabled people.
It addresses wide range of limitations and
combinations of limitations one might have (2013).
Furthermore, Design for Aging (DfA) focuses on the
aspects of aging that limit the use of user interfaces
(UIs) (Nichols et al., 2006), as well as features of UI
design that assist older users with age-associated
limitations (i.e. memory, cognitive, hearing, visual,
dexterity, and physical impairments) (Zajicek,
2001). The abilities of older adults can change over
time (Sanford, 2012). DfA successfully tackles the
problems they have with UIs by meeting the needs
and abilities of older adults throughout their lifetime
(Fisk et al., 2012). Based on UD approach,
Universal Usability (UU) makes information and
communication technology usable and accessible by
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Ruzic Kascak L. and A. Sanford J..
Aging with Multiple Sclerosis - Inclusive Universal Design (UD) Guidelines for Mobile User Interfaces.
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2015 SCITEPRESS (Science and Technology Publications, Lda.)
all people, with and without disabilities (Meiselwitz
et al., 2010). UU was defined as “having more than
90% of all households as successful users of
information and communications services at least
once a week” (Shneiderman, 2004). In addition,
mobile design guidelines and recommendations were
developed for general population to assist future
development of mobile technologies.
Similarly, the population of people aging with
MS is diverse in ranges and combinations of
functional limitations. Moreover, their abilities not
only change over time, but can vary from day to day
or within a day. As a result, existing design
guidelines that focus on singular and static
limitations are less effective for users with multiple
limitations and constantly changing abilities (Kascak
et al., 2014). Most importantly, design that
accommodates variability and combinations of
limitations would not only help the design of mobile
technologies for people with MS but all users.
2 OUTLINE OF OBJECTIVES
This research contributes to the state-of-knowledge
about design for people aging with MS and provides
a comprehensive set of design guidelines for the
mobile user interfaces for users through the analysis
of data from usability studies of three mobile
applications. More specifically, it focuses on
refinement of inclusive UD guidelines for mobile
user interfaces for older adults, which were based on
UD, DfA, UU, and mobile design guidelines
(Kascak et al. 2014) through the inclusion of users
aging with MS.
In our research, we are specifically focusing on
older adults, defined here as people of ages 60 and
more. Specific aims of the research are to specify
design characteristics based on the inclusive UD
guidelines and test those characteristics with older
adults with MS using three mobile applications.
Design characteristics will be tested using the
performance measures. The purpose of the usability
testing of three mobile applications is to analyse the
data gathered from older adults with MS in order to
inform the inclusive mobile design guidelines for
people aging with MS. Usability testing of the three
applications will provide recommendations for
design of apps for people aging with MS.
Furthermore, inclusive UD guidelines will
inform the design of the health recording mobile
application for people aging with MS.
3 STATE OF THE ART
The number of mobile applications designed for
people with MS is very limited. There are only
several of these applications available to this group
of users. These primarily focus on providing basic
information about latest research news and practical
tips on health, nutrition, and fitness, self-recording
of medication adherence and health status, journal
data-management, customized injection reminder,
connecting to healthcare providers to share the data,
and tremor tracking.
Multiple Sclerosis Association of America
(MSAA) released a mobile phone application, My
MS Manager, for individuals with MS and their care
providers (2012). The app offers tools for disease
activity self-reporting, storing medical information,
creating charts and reports for treatments, moods,
and symptoms, reminder settings, links to
educational materials from MSAA, and connecting
to healthcare providers to share the progress and
reports. Similarly, SymTrack was designed to
provide health self-reporting tool, which stores the
data, reports and shares the charts with healthcare
providers (2014b). myBETAapp is an app designed
specifically for scheduling, tracking, and recording
the treatment with a prescription medicine
BETASERON (interferon beta-1b) (2015c). MS self
offers a journal for self-reporting the moods,
thoughts, and health data, which can be later
accessed and shared with the healthcare team,
helpful health-related information, and achievements
for using the app (2015b). Momentum, the National
MS Society magazine, provides an interactive
mobile application, which includes stories about
people living with MS, expert opinions, reports on
current events, MS advocacy and recent advances in
MS research (2015a). MS Journal is an injection
reminder tool for individuals with MS and their
caregivers (2014a).
Researchers were working on the apps that track
tremor for people with MS (Joundi et al., 2011,
Carignan et al., 2015, Delano et al., 2011, Daneault
et al., 2012). Daneault et al. (2012) demonstrated
that mobile phones can be used as a standalone
platform to assess tremor and perform clinical
evaluations. Joundi et al. (2011) used the iPhone
accelerometer, through the iSeismo app interface for
earthquake tracking, to quickly assess the tremor
frequency. Carignan (2015) developed the
smartphone application as a standalone platform to
assess tremor. However, these research projects
were intended for use in the clinical setting, not for
the constant tremor tracking on individuals with MS.
ICT4AgeingWell2015-DoctoralConsortium
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Delano et al. (2011) were developing an application
to be used with the ubiquitous devices to collect data
on hand and arm tremors and send the results to
healthcare providers. This app was developed for
individuals with MS and their caregivers to track the
tremor, as well as for physicians to remotely monitor
the degree of disability, progression, and medication
response of people with tremor-related conditions.
Additionally, the app offered a social component to
let people share experiences, pictures, and
information.
In addition to a small number of interactive
mobile applications available for individuals with
MS, there is a lack of these applications for people
aging with this chronic disease.
4 METHODOLOGY
4.1 Participants
Three studies will be conducted with two groups of
participants. One group will be formed out of older
adults, ages 60 and more, without functional
limitations and the other one will be a group of older
adults with MS. The number and types of
impairments will be reported.
4.2 Mobile Applications
Mobile applications were selected for testing based
on their use by either older adults or people with
MS. First, a cognitive gaming app developed by the
GA Tech Rehabilitation Engineering Research
Center on Technologies for Successful Aging with
Disability was selected as it was specifically
designed for older adults with disabilities. Second,
My MS Manager was selected as it is a mobile
application designed specifically for people with MS
by Multiple Sclerosis Association of America
(MSAA) (2012). Finally, Candy Crush Saga was
chosen as it is a popular gaming app that has
reportedly been used by millions of older adults
(2014).
4.3 Experiment Setting
Testing will be performed in a controlled
environment at the GA Tech Center for Assistive
Technology and Environmental Access (CATEA)
Usability Lab, which will provide an equivalent
environment across users. GoPro Hero 3+ Black
edition cameras will be used for recording the
usability studies. The cameras are connected to
large screen LCD monitors for real-time observation
by the researchers. Three mobile applications will be
used on a Microsoft Surface using Windows 8, with
a 10.6 inch screen and 1366p x 768p screen
resolution.
4.4 Measures
4.4.1 Demographics and Background
Participant data on functional status and familiarity
with mobile applications will be collected through
self-reported assessments in addition to demographic
data.
4.4.2 Outcome Measures
Think Aloud protocol will be administered during
the testing. Participants will be given the tasks,
which will test specific design characteristics. These
design characteristics match the inclusive UD
guidelines for the purpose of informing the design
guidelines for interactive mobile interfaces to
include older adults with MS.
The post-study questionnaire will consist of the
SUS questionnaire (Sauro and Lewis, 2012), the
satisfaction questionnaire, and the open-ended
questions regarding the participants’ experiences and
difficulties with the applications.
4.5 Procedures
Participants will complete the demographic and
background questionnaire. Order of the three
mobile applications will be counterbalanced across
the participants. They will be informed to use Think
Aloud protocol.
Participants will be asked to use the three apps to
perform the tasks that will test specific design
characteristics, matched with the inclusive UD
guidelines. Following the completion of tasks for
each application, the post-study questionnaire will
be administered.
4.6 Analysis
Paired t-test will be used to report within group
statistical differences, and t-test on independent
means will compare across the groups statistical
differences. Differences in performance data across
the groups will assess the usability and the level of
universality of the apps.
AgingwithMultipleSclerosis-InclusiveUniversalDesign(UD)GuidelinesforMobileUserInterfaces
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5 EXPECTED OUTCOME
This research is an attempt to contribute to the
literature on needs and wants of people aging with
MS that interact with mobile technology. Results of
the three studies will inform the inclusive mobile
design guidelines for older adults to include people
aging with MS. In addition, we will provide
recommendations for design of future mobile
applications for older adults with MS. The expected
outcome of my PhD Thesis is the comprehensive
integrated set of mobile design guidelines for people
aging with MS that would be a complete design tool
for new mobile applications as well as an evaluation
tool and performance measure of the applications
based on these guidelines.
Moreover, guidelines will inform the design of
the health recording mobile application for people
that age with MS.
6 STAGE OF THE RESEARCH
The research is in the beginning stage of gathering
the literature on people aging with MS and existing
mobile technologies developed for the population of
people with MS, compiling the information
regarding the three mobile applications that will be
used for usability testing, and preparing the usability
testing with the three mobile applications. It is
grounded in the previous research of mobile
technologies for older adults and the set of inclusive
design guidelines for older adults for the purpose of
including people that age with MS.
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