Running head: IGNITE - EASING CANCER TREATMENT IN PEDIATRIC ONCOLOGY
Ignite
A mobile health app to ease the cancer treatment experience for pediatric oncology
patients and their families
Yukiha Maruyama
IGNITE
EXECUTIVE SUMMARY
Mobile health (mHealth)i technologies are changing the way clinicians deliver healthcare,
with goals of greater patient engagement and improved health outcomes. By 2018, 70%
of healthcare organizations worldwide are expected to be investing in consumer-facing
mobile applications (apps), wearables, remote health monitoring, and virtual care.ii
However, there are few mHealth options tailored for pediatric populations. Children are
not “little adults” in either physical or psychological terms; in essence, adult-centric
designs will not be as effective for the unique needs of this population. App features,
functionalities, and content must be creatively adaptive to capture short attention spans,
and resonate with evolving development capabilitiesiii and changing sizes.iv
This paper is a culmination of a project for Mobile Health Design, a class offered through
the Tufts University School of Medicine. It proposes the design and creation of a mobile
smartphone app, delineated in the following sections: background, needs assessments of
target users, competitive analysis, design specifications, wire frames, evaluation plan,
development plan, marketing plan, and limitations.
Ignite is a mHealth app that provides psychosocial support through play. It aims to ease
the cancer treatment journey and experiences for pediatric oncology patients who are
hospitalized for extended periods at a time or are receiving frequent and regular therapies
in a hospital or cancer specialty center, and their families. The app features single or
multi player social games, in-app messaging between users, pain tracking, community
forums for parents, and a guided (optional) tour to help parents identify appropriate
hospital resources to address their queries.
This app enables users to connect with other registrants receiving care at the same
healthcare organization, thereby helping build community and one-on-one relationships
between those who share the cancer experience. A child’s cancer journey often fluctuates
between inpatient and outpatient care, and vis-à-vis specific treatments that may cause
more or less side effects. Therefore, users will be able to log on when they are not
warded, ensuring that they can continue participating in the social games that help build
relationships and community.
As Ignite was designed to develop hospital-specific communities of pediatric oncology
patients and their families, it would be beneficial to engage health care organizations
(HCOs) in the user experience (UX) design and evaluation process. Partnerships with
leading cancer treatment centers, game designers, and developers will lend credibility,
appeal, and effectiveness to the app. With time, the app could include new features that
facilitate health data collection and tracking. In this manner, the app could be used as an
integrated tool that supports psychosocial care and provides valuable information to
medical providers to help them adjust treatment plans to best meet physiological needs.
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BACKGROUND
Mobile health (mHealth) technologies are changing the way clinicians deliver healthcare,
with goals of greater patient engagement and improved health outcomes. They also have
the potential to decrease healthcare cost for individuals and the medical system as a
whole, as well as increase patient and provider access to diagnostic, monitoring, and
chronic management toolsv For instance, Apple’s HealthKit gathers data from sources
such as glucose measurement tools, food and exercise-tracking apps and Wi-Fi connected
scales. With patients' consent, this information can be sent to an electronic medical record
for doctors to view. At least 8 of the 17 hospitals on one list ranking the best hospitals are
experimenting with this technology.vi
Despite the rise of mHealth, there are few options tailored for pediatric populations.
Children are not “little adults” in either physical or psychological terms; in essence,
adult-centric designs will not be as effective for the unique needs of this population. App
features, functionalities, and content must be creatively adaptive to capture short attention
spans, and resonate with evolving development capabilitiesvii and changing sizes.viii
Devices must be durable, unobtrusive, and have a passive use model, especially for
infants and small children.ix
Parents, other caregivers, and the health professionals who provide care have a pertinent
role in child health; caregivers especially in pediatric self-management. A study
conducted in inner city Brooklyn revealed that 59% of adult caregivers of children were
somewhat or very interested in medical apps for pediatric health issues, and that 66.9%
had looked up medical information using their smartphones.x In general, mothers and
caregivers want to be equipped with information about their child’s illness to be able to
respond effectively to their various health needs.
Given the aforementioned considerations, an area that is ripe for a pediatric-centric health
app is childhood cancer. Cancer in children is the leading cause of death by disease past
infancy among children in the United States.xi The major types of cancers in children
ages 0 to14 years are acute lymphocytic leukemia, brain and other central nervous system
tumors, and neuroblastoma, which are expected to account for more than half of new
cases in 2015.xii According to the American Cancer Organization, approximately 10,380
American children under the age of 15 will be diagnosed with cancer, and about 1,250 of
children younger than 15 years are expected to die from cancer in 2015. xiii However, the
5-year-survival rate now stands at approximately 80% - this is a significant increase
compared to the 58% 5-year-survival rate of the mid-1970s.xiv
Pain points for inpatient pediatric oncology patients include:
Increased risk for developmental/psychosocial problems with extended hospital stays
Children who experience numerous and prolonged hospitalizations at critical
developmental periods are at particular risk for developmental problems.xv Adolescents
can face a significant loss of independence and disruption of their social relationships at a
time when they should be developing social and relationship skills critical to successful
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functioning in adulthood.xvi Research has also identified some limitations in the social
functioning of school-age cancer survivors.xvii Children may return to their social network
at school and beyond without hair, with amputations, or with weight gain or other
physical changes resulting from their disease or its treatment. They also may have
developmental problems that require attention and need help in reentering social
relationships.
Limited mechanisms to handle symptoms associated with cancer and its treatment
Physical symptoms related to cancer and its treatment, specifically chemotherapy
include: anxiety, nausea, pain, fatigue, and loss of appetite. Despite remarkable progress
in conventional medicine (including recent pharmacological advances), health care
providers are often unable to alleviate many of the symptoms from cancer
treatment.xviii,xix
On the other hand, research shows that nonpharmacologic distraction techniques reduce
pain, fear, and distress in children and adolescents during cancer treatments – with
varying degrees of success. These include hypnosis, distraction, cognitive behavioral
therapies, relaxation, imagery, breathing, music therapy, play, self-hypnosis, acupuncture,
art therapy, coping skills training, handholding, humor, nonessential touch.xx, xxi, xxii, xxiii
For distraction via play using virtual reality and video games, studies show a statistically
significant alleviation of anxiety, pain, and nausea during cancer therapies including
chemotherapy and infusaport access..xxiv, xxv, xxvi, xxvii
xxviii
Proposal
70% of healthcare organizations worldwide are expected to be investing in consumerfacing mobile applications (apps), wearables, remote health monitoring, and virtual care
by 2018. xxix With the growing emphasis on mHealth within healthcare settings and the
current lack of options for pediatric patients, a mHealth app could be an effective solution
to easing cancer treatment for pediatric cancer patients.
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Ignite is a mHealth app that aims to ease the cancer treatment journey and experiences of
pediatric oncology patients who are hospitalized for extended periods at a time or are
receiving frequent and regular therapies in a hospital or cancer specialty center, and their
families. The app features single or multi player social games, in-app messaging between
users, community forums for parents, and a guided tour to help parents identify
appropriate hospital resources to address their queries.
Social games enable children to collaboratively build a digital world with other cancer
patients and survivors who are actively receiving care at the same hospital. It also
provides edutainment content where children can learn grade-appropriate content similar
to what their peers would be learning in school. The app is also family-friendly, allowing
parents and siblings to register so that the family can stay connected and engaged when
separations may occur due to treatment requirements.
Stress is particularly great for parents of children with cancer. Studies have shown that
this population has higher rates of post-traumatic stress disorder and post-traumatic stress
syndrome than either their children or adult cancer survivors.xxx Common issues facing
parents of children with cancer include financial stress, lack of or inadequate health
insurance, and emotional stress.xxxi This need inspired the social networking functionality
within Ignite, whereby parents can also create user profiles to participate in collaborative
games with their children, connect with other parents who are sharing the cancer
experience, and identify appropriate hospital resources that can help address their
concerns.
Due to the lack of mHealth products and services for pediatric oncology patients, there
are no established evidence-based guidelines specifically for this health topic.
Nevertheless, Ignite’s design took into consideration studies addressing
nonpharmacological distractors used for managing symptoms associated with cancer and
its treatment. Learnings will be discussed later in this report when describing Ignite’s
design.
NEEDS ASSESSMENT
Using a persona helps identify and hone in on the fundamental attributes of the website
that must be changed to better suit audience needs. Personas represent prototypical users
that portray vivid representations of a target audience by encompassing key attributes and
goals of the target. In essence, they are valuable tools that serve as benchmarks to
identify what changes would enhance user experience (appeal, usability, effectiveness)
and drive audience engagement with content. Creating a persona requires extensive
research into the unique characteristics, experiences, and needs of target users,
culminating in a vivid representation of a target audience segment in one projection –
such as what they value in terms of content, general technology use patterns,
demographic information, and how they would come to find and experience a product or
service.
Target users for Ignite include pediatric oncology patients who regularly receive care at a
hospital or other cancer specialty center. They could be warded for extended periods of
time, or patients who require frequent and routine rounds of cancer treatments. Other
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target users include parents and siblings of children with cancer who are actively seeking
treatment at a specific healthcare organization. Since the app is designed for users who
are frequently overseen by medical professionals, design should also take into
consideration provider perspectives.
Ideally, information pooled from observational research, surveys, focus groups, and
literature reviews should guide persona development. For Ignite, four personas
representing target users were designed using secondary research.
Meet Dr. Shanukah, pediatric oncologist
Dr. Shanukah is a senior pediatric oncologist at DanaFarber Cancer Institute in Boston, MA. After completing
her residency at Harvard Medical School, she worked at
Memorial Sloan Kettering Cancer Center (MSKCC) in
New York City, before moving to her current position.
With three children, one of whom is a survivor of
rhabdomyosarcoma, pediatric oncology is a profession that
also strikes extremely close to home. Witnessing the
challenges of managing cancer and its treatment, Dr.
Shanukah’s prescribes best-practice approaches for cancer
treatments and essential coping strategies to help patients
and their families get through this heavy experience.
Always keeping a pulse on industry innovations, Dr.
Shanukah actively monitors the advance of mHealth
technologies and innovations. At a Hacking Medicine event
Figure 1 "I do my best to ensure
hosted by Massachusetts Institute of Technology in 2012,
that my patients feel as
Dr. Shanukah met with several mHealth app developers
comfortable and child-like as
possible, despite the nature of a
and pediatric oncologists looking for tools to augment
cancer diagnosis and treatment."
patient supportive care in extended hospital stays. Their
discussions and further collaborations resulted in an
inpatient care app specifically tailored to provide edutainment and social games for
pediatric patients with extended stays in oncology wards. After approval from their
respective hospital directors, Dr. Shanukah and her medical collaborators on the project
were able to launch a pilot program granting patients and their families exclusive access
to download the app and build a community among themselves.
Meet Annabelle Burton, child with acute lymphoblastic leukemia
Annabelle is a nine-year-old, Caucasian girl battling acute lymphoblastic leukemia at
Dana-Farber Cancer Institute in Boston, MA. For the past two years, she has been in and
out of the hospital for intensive chemotherapy and radiation treatments with extended
hospital stays of several weeks to a month. Sometimes, the therapies knock the wind out
of her for a few hours, but more often than not she is awake despite her lack of physical
strength. Before she was diagnosed with leukemia, Annabelle was a vicarious girl who
thrived socially and academically as her class leader. Even in the hospital, the nurses on
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her floor speak of her sunny disposition and her ability to
make friends with other children in the ward.
Noticing that Annabelle was bright and eager to engage
with peers and games despite her fatigue and nausea, Dr.
Shanukah decides to introduce her to a new app that
enables her to connect with other inpatient pediatric
oncology patients, play learning games, and connect with
her parents. She explains that in using the app, she can
socialize with her friends and by herself whenever she
wants without having to lie in bed because she does not
have the energy to walk around the hallways to the group
room.
Today, Annabelle uses the app to play games or learn
interesting, educational facts whenever she is receiving her
chemotherapy treatments. After connecting with a couple
of other patients while in the hospital, they stay in touch
Figure 2 "I just want to get better. It's
nice that there are other kids in the
using the virtual world building game and instant
messaging through Ignite. For Annabelle, this feature is her hospital with me, I wonder if they are
like me too?"
favorite part of the app because it helps her stay connected
with friends when she doesn’t have the energy or strength to run around outside with her
school friends who do not have cancer.
Meet Michael Burton, parent of Annabelle who has acute lymphoblastic leukemia
Michael Burton is a 43-year-old investment
banker at Bank of America who lives with
his wife, Amy, and two daughters in Boston,
MA. Highly successful in his career and
family-oriented, he frequently leverages
technology to stay organized and connected
with clients, colleagues, family, and friends.
Priding himself on his ability to juggle it all,
Annabelle’s diagnosis and treatment
requirements have thrown him for a
whirlwind. While he is able to manage his
Figure 3 "The scariest thing is watching Annabelle fight
work life, he feels his family getting spread through her treatments and not knowing if at the end of
the day, she’ll make it. And, realizing that at the end of this
thin because Amy and he are constantly
all, even if she does get better, our family may never be the
trying to figure out who will stay with
same again.”
Annabelle and who with his older daughter,
Mikaela. With the family rarely spending quality time together, let alone any time, plus
the omnipresent reality of Annabelle’s cancer, Michael reaches out for advice from other
parents of children with cancer on an online forum. In one thread, a fellow community
member, Kriss, informs Michael that there are multiple apps that could help him better
manage the disease. Kriss suggests that he take a look at the app, “StandWith” – a care
management tool that enables caregivers to assign tasks or send updates to anyone who
might want to help out, connecting through Facebook, email, or Google+. The app sends
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out a push notification to the right people, who can accept or ignore. If nobody answers
the call, it stays red; once someone takes on the errand, it turns yellow; once it's
completed it turns green. As Michael expands his search for apps that would help his
family stay connected, he recalls that Dana-Farber offers a special tech-centric program
to help pediatric oncology patients with extended hospital stays and their families manage
the cancer experience and stay connected with their surroundings despite the consuming
nature of the disease and its treatment. He reaches out to Patient Services to find out more
about the program, and eventually reaches out to his wife and eldest daughter to
download the inpatient care app so that they can all stay connected.
Using the app, Michael is able to find information about the different hospital resources
that might help him navigate the treatment process and administrative tasks, as well as
connect with his family through games, and find a community of fellow parents who
have children seeking care at Dana-Farber. On occasion, a group of parents will connect
through the app to organize a meet-up when they are on duty staying with their child in
their ward.
Meet Mikaela, Annabelle’s sister
Mikaela Burton is a 12-year-old, Caucasian girl who
attends a local public middle school in Lexington, MA.
A member of the junior varsity soccer squad, she goes
straight to practice on Monday, Wednesday, and
Thursday afternoons. Her parents often take turns
picking her up in the evenings, as well as sending her to
games on the weekend. Usually, they will stay to watch
her games with her little sister, Annabelle, On Tuesdays
and Thursdays, Mikaela takes the school bus home and
spends the afternoon doing homework and hanging out
with her friends. When they are not together, they
frequently use Snapchat, Instagram, and Facebook chat
to send each other goofy pictures and talk.
When Annabelle first started getting sick from the
cancer and her medical treatment, Mikaela felt
extremely upset as she watched her sister lose her hair
and energy. And, when Annabelle repeatedly went in
Figure 4 "I wish Annabelle would get
for lengthy hospital stays, Mikaela’s sadness and desire better soon. I miss my family.”
for her sister’s recovery only grew more intense. Her
stays prevented the sisters from seeing each other, and Mikaela could only experience the
journey of the disease as expressed by the looks of sadness and tiredness on her parents.
Furthermore, she faced increasing periods of solitude when she had to take care of
herself.
At a recent family meeting with Annabelle’s oncologist, Mikaela was able to express her
own sadness, frustration, and fear. Dr. Shanukah recommends Ignite to her father,
Michael, who then encourages Mikaela to try out the app by playing a few games
together and building a virtual digital world of their own. These days, Mikaela uses the
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in-app chat features to connect with her sister and any other siblings of pediatric
oncology patients warded at Dana-Farber Cancer Institute.
Takeaways
Cancer treatments are often invasive and intense therapies that can physically exhaust a
patient. Psychosocial ramifications of therapies due to intense physiological reactions and
extended separation periods of patients from their usual communities (family, friends,
school) can take a toll on the individual, as well as their families who are also
experiencing the cancer journey as their loved one undergoes rigorous treatment. Given
the complex patient experience of cancer treatments that often affect families as well,
Ignite is a tool that can increase quality of life for the patient, as well as their loved ones.
In essence, an app that facilitates interaction and communication can help patients and
families adjust to the cancer treatment journey and navigate hospital landscape.
COMPETITIVE ANALYSIS
A competitive analysis is a systematic review of challengers who may share similar
goals, services and products, as well as target audiences. The primary goal is to learn
from their app design, features, and functionalities to identify key attributes to leverage
and to avoid. Ultimately, this analysis should help craft Ignite’s value add.
The following competitive analysis examined three competitor apps – Chemo Duck by
Gabe’s My Heartxxxii, “Pain Squad” by Cundari and The Hospital for Sick Children, and
Instapeer by Stupid Cancer. These apps target increasing quality of life for pediatric or
adolescent cancer patients through features such as in-app games, social networks,
videos, and gamified pain journals. All three apps were created by nonprofit
organizations, except for Pain Squad, which was created through a partnership between a
Canadian ad agency and a hospital.
Screenshots of the three apps explored appear below:
Figure 5 Chemo Duck
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Figure 6 Pain Squad
Figure 7 Instapeer
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The following table showcases key findings from 20 criteria used to analyze the three apps:
1. App or device name,
logo, url
1
2
3
Chemo Duck
Pain Squad
Instapeer
http://bit.ly/1oeSjVY
http://instapeer.org/
To encourage pediatric
oncology in-patients to
keep detailed daily pain
logs. Often children who
have just undergone
chemotherapy often feel
too weak, tired, or
discouraged to pick up a
pen and do the work.
Consequently, pain
journals are inconsistent
and cannot help
healthcare providers and
patients understand
treatment effects on
To create a social network of support
between cancer patients, survivors, and
caregivers. The Institute of Medicine
found that a lack of peer support is a
contributing barrier in the fight to
improve outcomes for cancer patients.
Pediatric patients report feeling
especially isolated when diagnosed
with cancer. Young adults fighting
cancer while trying to keep up with
school, or start dating, or earn a degree,
or begin their careers. They are a
population that struggles with different
life challenges than older cancer
patients, and the need for peer support
is critical. Instapeer facilitates
http://apple.co/1dIRv7c
2. Objective at a glance
A free app filled with
games to help children of
all ages living with cancer
adjust to hospital life and
treatments. Games target
education and
entertainment.
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patient and their quality
of life. lets you track the
following:
Where it hurts, how much
it hurts and how much pain
gets in the way of your
daily activities.
What’s causing the pain
(treatment, cancer itself).
What makes the pain better
or worse?
Exactly where you feel the
pain (by marking it on a
body diagram).
What you do to reduce or
get rid of the pain.
When you log your pain
New users join the squad
as "rookies" and earn
higher ranks up to "police
chief" as they progress
through levels by
completing regular
surveys. Stars from
different Canadian police
establishing one-on-one peer
connections among users
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3. Purpose and Goals
dramas, such as Rookie
Blue and Flashpoint,
appear in costume
periodically in video
messages of
encouragement.
The name and logo of the
App name and logo
app allude to a tool that can promote idea of combat
help children with cancer
teams fighting to protect,
feel less isolated during
perhaps something a child
their treatment, helping
with cancer is looking for.
them learn what to expect
A sense of support and a
during cancer treatment
team that is fighting to
hand have a friend to share help battle and beat the
the experience. This tool is cancer they are faced with.
actually a stuffed yellow
Exactly how the Pain
duck dressed in blue
Squad will help with
hospital scrubs with a
tracking pain management
bandana around its head, a
is not manifestly evident,
chemotherapy port on its
however for this young
chest and an immobilizer
population it is not an
on his arm. While the app
issue as they need
logo and name matches this something more familiar
product offering, it does not and simple to engage with
encapsulate the app, which rather than a cut-and-dry
is a separate offering from
communication that the
Gabe’s Chemo Duck
app is about pain
program (the nonprofit that management and tracking.
created the soft toy and the
app).
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“Instapeer” seems to play off the name
of popular social media app,
“Instagram” - a real-time photosharing
app. In this instance, it communicates
the idea of near instantaneous access to
a community of support. While the app
name and logo do not clearly identify
that it is a social network created to
support those with cancer-related
experiences, the tagline,
“#nosurvivoralone” communicates a
sense of solidarity among community
members. If a user was one with cancer
experience, this tagline likely resonates
with them. However, a completely
uninitiated user may not make the
cancer association simply with the
word, “survivor.”
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4. Users
Imagery and language
indicate young pediatric
oncology patients as the
primary target.
5. Ratings and reviews
Current available on iOS
only. No ratings, reviews,
or feedback available on
the app store or nonprofit
website.
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Users currently limited to
inpatient pediatric
oncology patients at The
Hospital for Sick Children
in Toronto. It is slated for
testing in other Canadian
pediatric hospitals.
App has received
multitude of positive press
coverage and reviews from
commercial sites such as
Mashable, AdAge, and
FastCompany. Also
recipient of multiple
awards, including two
Gold Lions at Cannes
Lions, the world's biggest
annual awards show and
festival for professionals in
the creative
communications industry.
App descriptions and testimonials
indicate that users are cancer patients,
survivors, and caregivers.
Long list of charity partners and
founding backers consisting of private
foundations, individuals,
pharmaceuticals, and nonprofits portray
a sense of credibility and reliability.
Rated 4.5 stars on Google Play store; 5
stars on iTunes store
6. Downloads and use
How many users/downloads
are there? Is there data
about retention?
No data available
N.A.
Between 500 and 1000 downloads on
Google Play store
7. Research
App was created via a
collaboration between 12year-old
rhabdomyosarcoma patient,
Cundari, a Canadian ad
agency worked with
scientists from the Pain
Centre at SickKids and
App created by Stupid Cancer, a
501(c)(3) nonprofit organization that is
the largest charity that comprehensively
addresses young adult cancer through
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Gabe (son of funding
nonprofit’s founder), and
an app designer. Most inapp games designed vis-avis Gabe’s lived
experiences as a longtime
cancer patient.
developed the app inhouse.
advocacy, research, support, outreach,
awareness, mobile health, and social
media. All programs and the Instapeer
app are developed vis-a-vis evidencebased practices.
8. Design
Brightly colored design
mainly using orange,
yellow, blue, and green
only. Few buttons and
imagery on each app
interface, with plenty of
neutral space to facilitate
easy cognitive
comprehension and
interaction.
Design replicates a
traditional paper notepad
as background,
superimposing pain meters
and other measurement
icons. Even these graphics
are kept simple and in-line
with an “old-school” feel
of pen and paper writing.
Consistent graphic styles
strengthens visual appeal
of the app design.
Design is similar to the mobile Gmail
interface featuring a user avatar and a
pull-out menu with several features
including Inbox, Messages, Recent
Connections, Favorites, Matches, Filter
Settings, Requests, and Donate. Color
palette includes orange, white, and
green online - making for a visually
clean interface.
9. Layout and navigation
App has a main page with
game options presented as
icons. Games include Talk
Like a Duck, Exercise
Wheel, Touch and Learn,
Call from Chemo Duck,
Hospital Bingo and Mix
and Match. When
Content delineated by
different pain measures
such as “Touch the mark
and move it to show how
much PAIN you have right
now,” “Touch the parts of
the body picture WHERE
YOU HURT in the last 12
App sections delineated by content
type. Main functions include
creating/editing personal profile, and
connecting with peers who may have
similar cancer experiences. Navigation
is a pull-out bar from the left side of the
phone and does not block main UI.
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10. Branding and external
affiliations
Who created the app or
device and why? Is there
organizational branding,
accreditation, sponsorship,
or advertising?
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launched, each game
occupies entire screen
space, and users can return
to home page by clicking
appropriate icon. But, this
appropriate icon is difficult
to find. “How to play”
instructions easily
accessible by clicking on
titled button.
hours,” “Touch the words
that best describe how
your pain felt in the last 12
hours,” and “When you
had pain in the last 12
hours, how long did it
USUALLY last?” Each
question has a unique app
page, so users need only
focus on one task at a time.
Gabe’s Chemo Duck
program is a program of the
Nashville-based nonprofit
organization, Gabe’s My
Heart, which was
established in 2004 to
provide education and
comfort to children living
with cancer through
medical play using
therapeutic tools. The goal
of the program is to enable
hospital staff and parents to
prepare children for
chemotherapy treatment
and eliminate the fear of
the unknown. App follows
organization’s branding
guidelines and sponsorship.
App created pro-bono by
Canadian ad agency,
Cundari, in response to a
Request for Proposal from
The Hospital for Sick
Children. In-app features
also showcase video reels
from members of the cast
of Canada’s top-rated
police dramas, Flashpoint
and Rookie Blue Currently,
app features the hospital’s
logo.
Created by Stupid Cancer, a national
nonprofit. Instapeer design in line with
Stupid Cancer’s branding,
accreditation, and sponsorship.
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11. Expert content
No expert-generated content Questions generated vis-avis scientists from the Pain
available.
Centre at The Hospital for
Sick Children. Does not
identify specific medical
professionals.
Mostly user-generated content since
this is a social networking site
dedicated to connecting cancer patients,
survivors, and caregivers. Text and
graphics. No evidence of expert
content.
12. Oversight
Gabe’s My Heart has a
Board of Directors with
representatives working in
various industries including
healthcare, insurance, and
education. No information
about the board’s
involvement in app
oversight.
App content and
development overseen by
The Hospital for Sick
Children.
No information available. Could be
overseen by the Board of Directors of
Stupid Cancer
13. Literacy and
readability
Content has minimal copy,
focusing mainly on visual
designs. Any copy is
generally kept to two to
three sentences, less than
10 words long. Each game
comes with a set to “How
to Play” instructions.
User-generated content
prompts kept to fifth-grade
literacy level. Questions
are clear-cut directives that
highlight one task at a time
for completion.
Encouragement and
recognition for completing
pain diaries also provided
in the form of videos from
cast of top Canadian police
dramas.
App contains instructions for setting up
user profiles and connecting with peers.
Copy is kept very simple - just the bare
minimum to highlight user input
sections and ways to connect with
others.
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14. User-generated
content and sharing
No social media or usergenerated components.
User-generated content
exists solely as responses
to pain measurement
questions.
Users can connect with each other
through the app and communicate via
in-app messaging.
15. Policies
No information available
No information available
Users can access terms in app or on app
website. Terms contain explicit policies
and disclosures regarding information
collected.
16. Registration
Users create in-app profiles
(registration). This profile
is used to log gold coins
that children can earn as
they level up in games.
Users can only use the app
if they inpatient pediatric
oncology patients at The
Hospital for Sick Children.
No further information
available about
registration.
Users required to register and create an
online profile with their name, cancer
type, identity
(patient/survivor/caregiver), age,
location, and tagline. App algorithms
use this information to suggest potential
peer matches.
17. Cost
Free app. No premier
features.
No information available
Free app. No premier features.
18. Devices and websites
Requires iOS 5.0 or later.
Compatible with iPhone,
iPad, and iPod touch. This
app is optimized for iPhone
5.
Currently available for iOS
devices only
App has presence on Twitter,
Facebook, and Instagram. However,
these platforms do not offer any of the
in-app features. They serve more as
marketing opportunities to spread the
word about the app.
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19
19. Support and feedback
Users must contact the
Chemo Duck program via
their website. No feedback
survey or support forum for
users in app.
Presumably staff at The
Hospital for Sick Children
will be able to provide app
support, if necessary.
Patients should be able to
provide verbal feedback to
healthcare providers. No
information about formal
support and feedback
arrangements.
Users can access support, terms,
privacy information, and forums on the
app website. Unclear if they can access
the same information through the app.
20. Overall assessment
Best: Multitude of in-app
game options to choose
from, without requiring
unique logins and
disclosure of privacy
information for all. Also
creates a more personal
experience by having
Chemo Duck “call” the
child through the app to
share a joke.
Best: Focusing on one task
at a time for a child to
complete. Also
incorporates positive
reinforcement for
performing desired action
(completing pain journals,
twice daily) through video
communication with
celebrities, and earning
points to move up in rank
within the pain squad.
Best: A secure social network of users
who have some kind of cancer
experience. Users know that they are in
common company, and may help them
feel more at ease due to probably less
stigma or sense of isolation from those
who have no cancer-related
experiences.
Worst: Lack of user
support and transparency
about app oversight. Would
be good to have reviews
too. We know that the
Chemo Duck is employed
in many hospitals
nationwide, but number of
Worst: App program
created for a two-week
window of interaction.
After this time frame, there
is no next step for the child
to continue pain diaries.
Need more continuity.
Worst: Limited opportunities for more
than two-person chats. No forums or
discussions to collate user-generated
content that may be beneficial for the
masses.
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app downloads and
integration into the
program would be good to
know.
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The competitive analysis highlighted several strategies and techniques that were taken
into consideration for Ignite design:

In-app communication between users: The app is specifically designed for
active pediatric oncology patients and their families who may spend days in a
healthcare setting during the cancer treatment journey. Enabling them to build a
social network may help enhance their quality of life. This is especially so in
cases where children may be too fatigued or nauseated by their treatment to exert
much physical activity.

Design-centric communication > copy: Using simple visual imagery such as
icons and other graphics in lieu of text for navigation and requesting user-input
could work particularly well for pediatric patients who likely have a range of
literacy levels. This is also an important consideration for facilitating an in-app
community that could represent a host of pediatric oncology patients looking to
engage with other users. Caution to be exercised that each screen features the
minimum number of icons necessary, using negative space to present a clean UI.
Other design considerations include using a tricolor palette as benchmark for the
app color scheme with slight gradients of each main color if necessary, and single
navigation panes.

Feature in-app support forums or FAQs to help families navigate app features,
as well as their experiences managing cancer

Avoid hitting a ceiling: Gamifying pain journal entries was an effective and
engaging tactic leveraged by Pain Squad. However, the app contained just two
weeks’ worth of content. This would be counterproductive if a child’s hospital
stay extended beyond that time period. Any games or app features that encourage
user input into creating an experience or building something should ensure that
users have the choice to stop playing or provide other pathways of engagement
after completing the initial task.
Some opportunities to differentiate XX include:

Providing educational and entertainment content to create an edutainmentoriented app that can be used to meet social and developmental needs of children.

Enabling parental participation in games or the social network so that they can
connect with other parents and caregivers who are also managing childhood
cancer

Tracking user participation over time to identify any patterns in engagement.
These patterns could also be cross-referenced with treatment schedules as an
additional measure of patient’s response to treatments. Any behavioral changes
from usual app engagement behaviors that sync with intense treatments could
suggest how well/poorly a child may be reacting to treatment

Partnerships with renowned cancer specialty centers such as Memorial Sloan
Kettering Cancer Center and Dana-Farber Cancer Institute. Affiliations with these
institutions would communicate to prospective users that in-app content and
features are trustworthy and approved by leading medical institutions. This is an
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important consideration as app safety, credibility, and reliability are likely to be
among a host of concerns that parents of pediatric oncology patients may have as
they would not want any additional stress or harm to come their child’s way.

Partnerships with existing education startups/apps such as Duolingo.
Sponsored content from these entities could help raise awareness about Ignite and
the partner, as well as provide children with successful learning apps to ensure
that they are able to stay intellectually stimulated vis-à-vis their grade levels
DESIGN DESCRIPTION
Adjusting to hospital life and treatments is a challenge for pediatric oncology patients and
their families. Ignite a mHealth app that aims to ease the cancer treatment journey and
experiences through interactive play and communication.
Ignite will offer several functionalities that will be categorized into three buckets –
“Learn,” “Play,” and “Connect.” Each of these buckets will be presented as a button on
the main screen when a user logs in. Upon clicking one of the above, users will be
presented with games to play, message inboxes, or other features described below.
Learn
This feature will include three educational games, each one focused on either English,
Math, or Cool Stuff (i.e. world history/science/geography facts). Each option will be
presented as clickable icon, with a brief description of what users can learn about. Upon
selecting one of the options, the screen will showcases digital flashcards. Each flashcard
can contain new information, or a question and an answer. To encourage use, learning
will be gamified. As a user progresses through the various flashcards, they will earn
points and gradually “level up.” Badges associated with each new level will then be
displayed on their profiles. If two players decide to study together, they earn double the
usual number of points, and can also challenge each other through trivia.
Play
This feature will present six games that can be single- or multi-player, with the user
playing with another user or the computer. In Ignite’s beta-version, these games will be
existing products such as UNO, Connect 4, Battleship, Tetris, My Talking Tom, and a
simplified, app version of The Sims. The primary game of this app should be one that
enables users to collaboratively build a digital world. The main goal is to provide an
opportunity for users to build self-efficacy and a sense of empowerment by taking
ownership for creating something of their own. As children, pediatric oncology patients
are often not actively engaged in care decisions – rather, they are recipients of whatever
decisions their medical care team vis-à-vis their parents may decide. They may also
experience a lack of control when dealing with symptoms associated with cancer and its
treatment. Given the specialized nature of social game design, a request for proposal will
be sent out.
When using multi-player mode, users will be able to send and receive in-app messages
with their teammates or opponents. This communication element is to make the
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game/distraction experience more three-dimensional and personal – augmenting the
immersive element of the Play features.
Connect
This feature will enable users to browse or search specifically for users in their hospital
network. Profiles will be presented as flashcards, displaying an user’s avatar, screen
name, and status. If they have chosen to share other information such as their quick selfintroduction or cancer type, this information will also be presented. Depending on the
self-identified status of the user, the app will present flashcards that correspond with the
individual’s status (i.e. Someone who self-identifies as “My child has cancer,” will only
see profiles of those who share that status). Should the individual decide to connect with
another user, they can send a brief invitation through the app. A user must accept this
invitation before the users can connect and send text messages or images. Two users who
are already connected can start group chats.
Users who identify as “My child has cancer,” will have access to a community board with
threads of user-generated questions, a FAQ portal with content populated by the hospital,
and a guided questionnaire that will present a list of relevant hospital resources (which is
decided depending on the user’s answers to the prompts).
Compliance with Evidence-Based Guidelines
Due to the lack of mHealth products and services for pediatric oncology patients, there
were no established evidence-based guidelines specifically for this health topic.
Nevertheless, Ignite’s design applied the following learnings from studies addressing
nonpharmacological distractors used for managing symptoms associated with cancer and
its treatment:
 Provide the patient with ability to choose distraction activity (e.g. choose out of
10 games available)
 Teach the patient how to use the tool/intervention
 Make sure it is age appropriate, immersive, and engaging to keep child’s attention
away from the procedure
 Can involve parents in the distraction intervention, such as encouraging child
during play or participating in game/education
Additionally, Ignite’s design applies theoretical constructs of the health belief model
(HBM). Developed in the 1950s, HBM is a psychosocial behavior theory used to
understand how people make decisions that lead to behavior change (see Figure 8).
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24
Modifying
Variables
Perceived Benefits vs.
Perceived Barriers
Perceived
Severity
Perceived Threat
Perceived
Susceptibility
Self-Efficacy
Likelihood of
Health Behavior
Change
Cues to Action
Figure 8 Health Belief Model
In a nutshell, this theory highlights that for individuals to engage in a health behavior
change they must experience a perceived threat posed by a current behavior, believe that
the benefits of behavior change outweigh the barriers to making that change, have enough
confidence that they can make the change, and have cues that provide encouraging
nudges towards making a change (see Table 1 for detailed application of HBM in Ignite).
Table 1. The Health Belief Model (HBM) in Ignite
HBM Construct
Ignite
Perceived threat
Patients in long-term hospital stays or who have active, frequent,
routine cancer treatments disengaged from home and school
communities. Also, symptoms of cancer and its treatment cause
elevated pain, fatigue, and nausea, preventing engagement in
physically or mentally strenuous play, also causing significant
distress during administration of treatment
Siblings of patient have less contact with family; may feel
neglected and/or more lonely as their sibling cannot engage in the
same way and parents may be busy managing care
Parents may feel overwhelmed by the cancer experience; unsure
about where to look for information to help them navigate hospital
landscape, financial concerns, etc. May also experience family
relationships declining due to extended separation of members.
Perceived benefits
Patients, siblings, and parents have a tool that will help the family
stay connected and enable them to engage with other users who
may also be able to relate to the cancer treatment journey and
experiences.
Patient will be able to use Ignite during treatments to help pass the
time and numb any negative symptoms. Able to engage in learning
according to their grade-level so that they may be better able to
catch up with their peers. Opportunity to take ownership of
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Perceived barriers
Self-efficacy
Cues to action
25
something of their own making, boosting self-efficacy.
Parents have resources and support to help them manage the many
demands associated with cancer and its treatments, as well as
navigate a complex hospital system,
Patients may lack energy to use the app often.
Parental concerns about data security and privacy. Too many other
apps demanding their attention may also distract from Ignite.
All targets users may perceive that the UI may be difficult to
navigate, lack of appealing games, smartphone lacks capability to
host the app, no smartphone.
Confidence levels may vary drastically among users. When a
patient is enduring a particularly difficult episode related to cancer
and its treatment, self-efficacy levels may dip drastically – along
with those of their parents and siblings who are also part of the
care journey.
Push notifications when users receive a new message or a
connection request. Points and badges earned as users progress
through games may incentive continued use of the app.
Usability by Personas
As stated, each of the personas experienced a significant deterioration in their quality of
life and psychosocial health as a result of living with cancer and the intense and invasive
treatments that displaced them from normal everyday activities and communities. Ignite
provides a way for patients to stay engaged with peers, distract themselves during
treatments, and ultimately have a sense of ownership in their lives. Siblings can connect
with other people who have siblings with cancer, parents can connect with other parents
dealing with childhood cancer, thereby creating a community where they can find and
provide support. In essence, this app is a tool for users to ease their experience through
interactive play and community. Using the three buckets, Learn, Play, and Connect
simplifies in-app navigation, allowing users to easily access desired features and be
rewarded through peer interactions and points/badges from games. These reinforcements
ideally would incentivize continues use of the app. Lastly, since the app requires specific
codes from hospitals in order for users to register, this may provide increased sense of
security, privacy, and reliability for user who are concerned about who they will engage
with, and what might happen with any information that they share.
Improvement on Existing Apps while Capitalizing on Mobility and Context
Designed so that users can build community and one-on-one relationships with others
who share the cancer experience and are in their vicinity, this app enables users to
connect with other registrants receiving care at the same healthcare organization (e.g. all
patients and their families at MSKCC can connect with each other; same applies for all
patients and their families seeking care at Boston Children’s Hospital). Attending
physicians can give a registration code to patients and their families that will enable them
to log in and connect with a specific hospital’s network of users. Upon registration within
a specific hospital network, users will be required to create a profile with their screen
names, full name, age, in-app avatar of choice, and status (“I have cancer,” “My
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26
brother/sister has cancer,” or “My child has cancer.”) Optional information includes
cancer type, quick self-introduction, and attending physician. Upon log in, only screen
names, avatars, and status will be displayed on user profiles.
A child’s cancer journey often fluctuates between inpatient and outpatient care, and vis-àvis specific treatments that may cause more or less side effects. By enabling users to log
on when they are not warded ensures continuity in the social gaming process, which is a
means for patients and their families to continue participating in the social games that
help build relationships and community.
WIREFRAMES DEPICTING A SUBSET OF THE FUNCTIONALITY
Figure 9 Home Screen After User Registration
Figure 10 Learn Screen with Options
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Figure 11 Play Screen - users can select
single/multiplayer after choosing game
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Figure 12 Connect Screen with User Browsing
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EVALUATION PLAN
To test the usability, appeal, and effectiveness of the app, formative evaluations will be
conducted at three stages. The following section details the rationale for each evaluation,
the target test group, methodology, and script. For each evaluation, six subjects will be
recruited, varying in age, gender, occupation, and cancer status (patient, sibling, or
parent). Two subjects will be parents of children with cancer. Another two subjects will
be siblings of children with cancer. The final two subjects will be current pediatric
oncologists. Two pediatric oncology patients will be invited to formative evaluations 2
and 3. Subjects will be recruited via convenience sampling. Potential avenues of
recruitment include: pediatric oncology wards in leading cancer centers such as MSKCC,
pediatric oncology wards in local hospitals, and the American Cancer Society.
Formative Evaluation 1: Screen mock-ups with descriptions of the app features
Formative Evaluation 2: Working prototype
Formative Evaluation 3: Beta app
See Appendix A for the formative evaluation script.
Compensation
Subjects will receive a $10 Starbucks gift card and handwritten thank you card. They can
also opt-in to receive an invitation when the app goes live. Compensation will the same
for all subjects across all sessions.
Staffing and Role Responsibilities
One evaluator and one scribe for all sessions. Ideally, the same individuals should
perform the evaluator roles across all formative evaluation sessions to maintain
consistency in assessment. Changing personnel may result in more uneven appraisals of
subject responses due to different evaluator personality and internal heuristic evaluation
criteria. Evaluators should be third-parties to the website redesign project to reduce
observational biases.
Any designers or developers may serve as scribes or observers in the evaluation sessions.
However, the two roles are to remain silent during the evaluation to reduce risk of
influencing subject’s responses or inhibiting open conversation.
Scribes must prepare a brief document containing all notes recorded during the session.
These will aid website redesign decisions and strategies, and may contain valuable
information to include in future evaluation sessions.
Review
When possible, evaluators, scribes, and observers should meet after each major
evaluation session to review notes, discuss feedback, and deliberate changes that may
benefit the redesign.
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If designers and developers were absent during formative evaluation sessions, it would be
beneficial to invite them to participate in review sessions. This would be an opportunity
for them to provide inputs that can identify best redesign decisions.
Prioritization
During review, sieve through notes to extract actionable positive and negative feedback.
Any mined content should be prioritized according to the criticality of the issue and the
ease/difficulty of making revisions to the website redesign. See Appendix B for
recommended prioritization scheme to assess feedback.
After the review for each formative session (I, II, III), staff may produce an executive
summary highlighting the outcomes to share with any staff who did not participate in the
sessions. This summary should identify the number of subjects, their demographic data,
prioritized assessment of feedback, and proposed solutions to any identified problems.
Post-App Completion
Following the completion of the website redesign, Ignite developers could conduct a
heuristic evaluation once every six months or annually. Should the creators decide to
accept the recommended redesign concepts, their website could have new content
available on a quarterly to half-yearly basis. New content affects user experiences; using
a set of heuristics or checklist to assess site usability, appeal, and effectiveness vis-à-vis
changes would be beneficial to ensuring that the site continues to meet its goals and
engage with visitors.
DEVELOPMENT PLAN
To maximize reach, Ignite will be designed for Android and iOS. Creating relevant
content will be conducted via pediatric oncology experts and game developers.
Costs
For-profit and non-profit entities addressing pediatric cancers will be contacted to
consider development collaborations. Potential partners include Memorial Sloan
Kettering Cancer Center, Dana-Farber Cancer Institute, Stupid Cancer, Stand Up to
Cancer, American Cancer Society, American Medical Association, and Gabe’s Heart
Program. Brand logos of collaborators will be featured on the “About Ignite” screen
within the app, as well as in the app description. Based on the proposed design, estimated
costs for creating the app include development costs, design costs (iOS and Android
coding), evaluation costs for three sessions.
Schedule
Approximately one year will be required for completion of the app, from conceptual
design to development and prototyping for initial release. This app is not meant for public
release. Therefore, an additional six months may be required to engage prospective sites
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that can bring in the app for use among patients and families within pediatric oncology
department.
MARKETING PLAN
Given that experts remain the trusted source of health information in searches and
decision-making and the robust social life of health information – half of all online health
inquiries are for someone else and one-third of American adults access social media
related to health (Fox & Jones, 2009) – Ignite could position itself as a premier app
designed in collaboration with leading cancer centers. Highlighting the input of medical
experts as well as app designers and developers can help augment the credibility,
trustworthiness, and general appeal of the app. This is especially important as this app
will not be marketed to the public, rather it will be marketed to healthcare organizations
with pediatric oncology departments.
A beta launch of the app will benefit its appeal to target users. During this time,
developers could work out bugs and final changes can be made before the final product is
brought force to potential customers. When cancer care organizations adopt the finalized
app as part of its product/service offerings, they can leverage their internal
communication systems to inform current patients and their families about Ignite as a tool
to help ease the cancer journey. Organizations could also leverage their social media
accounts to highlight this addition, thereby adding to their repertoire of value-adds that
could appeal to prospective patients.
Depending on the partners recruited for bringing the app to life, RFPs could be sent to
marketing agencies to develop a brand strategy, messaging, and advertising for Ignite.
LIMITATIONS
As Ignite was designed to develop hospital-specific communities of pediatric oncology
patients and their families, it would be beneficial to engage health care organizations
(HCOs) in the user experience (UX) design and evaluation process. The current proposal
relies primarily on secondary research; including perspectives from providers, patients,
and their families attending leading cancer treatment centers will help refine needs
assessment and identifying design features that will provide the most value add for easing
cancer treatment journeys.
The current design proposal addresses psychosocial needs within pediatric oncology
settings. With time, Ignite could include new features that facilitate health data collection
and tracking. In this manner, the app could be used as an integrated tool that supports
psychosocial care and provides valuable information to medical providers to help them
adjust treatment plans to best meet physiological needs. One prominent pain point for
pediatric oncology patients and providers is limited means to accurately evaluate pain
level of child and to obtain consistent feedback from children through traditional, pain
diary logs. After undergoing multiple intensive cancer treatments, children often lack the
energy to move around, pick up a pen, let alone complete an in-depth pain journal.
Without continuous information about pain experiences, doctors and researchers lack the
data necessary to identify potential aggravators and alleviators. Currently, one mHealth
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app designed to encourage pediatric cancer patients to fill out detailed reports daily
documented a 81% compliance rate, and is now being implemented in hospitals across
Canada.xxxiii Future Ignite designers and developers could collaborate with game design
specialists to create social games that incorporate direct or indirect measures of pain.
REFERENCES
American Cancer Society. (2015). What are the key statistics for childhood cancer?
Retrieved from
http://www.cancer.org/cancer/cancerinchildren/detailedguide/cancer-in-childrenkey-statistics
Antonarakis, E. S., Evans, J. L., Heard, G. F., Noonan, L. M., Pizer, B. L., & Hain, R. D.
(2004). Prophylaxis of acute chemotherapy-induced nausea and vomiting in
children with cancer: What is the evidence? Pediatric Blood and Cancer, 43(6),
651-658.
Bruce, M. (2006). A systematic and conceptual review of posttraumatic stress in
childhood cancer survivors and their parents. Clinical Psychology Review, 26(3):
233-256
Committee on Psychosocial Services to Cancer Patients/Families in a Community
Setting. Adler, N.E. & Ann, E.K. (Eds.) Cancer care for the whole patient:
Meeting psychosocial health needs. The National Academies Press: Washington,
D.C. http://www.ncbi.nlm.nih.gov/books/NBK4015/pdf/Bookshelf_NBK4015.pdf
Cooper, V. & Nelson, R. (2015). The impact of play and recreation on reported pain
levels in children with cancer. Therapeutic Recreation Journal, XLIX (1), 84-86
Cundari. (2013). Pain Squad mobile application. Retrieved from
http://www.cundari.com/cases/sick-kids-pain-squad/
Farr, C. (2015). Exclusive – Apple’s health tech takes early lead among top hospitals.
Retrieved from http://uk.reuters.com/article/2015/02/05/uk-apple-hospitalsexclusive-idUKKBN0L90FH20150205
Gershon, J., Zimand, E., Lemos, R., Rothbaum, B. O., & Hodges, L. (2003). Use of
virtual reality as a distractor for painful procedures in a patient with pediatric
cancer: A case study. Cyberpsychology and Behavior, 6(6):657-661
Gershon, J., Zimand, E., Pickering, M., Rothbaum, B. O., & Hodges, L. (2004). A pilot
and feasibility study of virtual reality as a distraction for children with cancer.
Journal of the American Academy of Child and Adolescent Psychiatry, 43(10):
1243-1249.
IDC Health Insights. (2014). IDC reveals health insights predictions for 2015. Retrieved
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from http://www.idc.com/getdoc.jsp?containerId=prUS25262514
Molassiotis, A., & Cubbin, D. (2004). ‘Thinking outside the box’: Complementary and
alternative therapies use in pediatric oncology patients. European Journal of
Oncology Nursing,8(1), 50–60.
Moore, J. B., & Beckwitt, A. E. (2004). Children with cancer and their parents: Self-care
and dependent-care practices. Issues in Comprehensive Pediatric Nursing, 27(1),
1-17.
Niksch, A.L. (2015). mHealth in pediatrics – Finding health care solutions for the next
generation. Retrieved from http://www.themhealth.org/article/view/5969/6667
National Cancer Institute. (2014). Cancer in Children and Adolescents. Retrieved from
http://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-factsheet#r1
National Cancer Institute. (2015). Childhood Cancers. Retrieved from
http://www.cancer.gov/types/childhood-cancers
Redd, W.H., Jacobsen, P.B., Die-Trill, M., Dermatis, H., McEvoy, M., & Holland, J.C.
(1987) Cognitive/Attentional Distraction in the Control of Conditioned Nausea in
Pediatric Cancer Patients Receiving Chemotherapy. Journal of Consulting and
Clinical Psychology, 55(3): 391-295
Rheingans, J. (2007). A systematic review of nonpharmacologic adjunctive therapies for
symptom management in children with cancer. Journal of Pediatric Oncology
Nursing, 24(2): 81–94
Windich-Biermeier, A., Sjoberg, I., Dale, J.C., Eshelman, D., & Guzzetta, C.E. (2007).
Effects of distraction on pain, fear, and distress during venous port access and
venipuncture in children and adolescents with cancer. Journal of Pediatric
Oncology Nursing, 24, 8-19
BIOGRAPHY
Yukiha Maruyama is a graduate student at Emerson College and
Tufts University School of Medicine. A health communicator
specialized in consumer research and digital health design, she
has a keen interest in leveraging interactivity through digital to
promote health behavior change. She can be reached at
maruyama.yukiha@gmail.com
or
on
LinkedIn
at
https://www.linkedin.com/in/yukihamaruyama.
APPENDIX A: FORMATIVE EVALUATION
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Welcome: extend thanks and appreciate for subject’s time to help evaluate Ignite; collect
demographic information using paper form (age, gender, occupation, race, type of cancer
for self/sibling/child). Informed consent must be provided before proceeding with the
evaluation
Before seeing app (10 minutes):
- Do you use any apps related to managing or coping cancer?
- Do you use any apps to help you manage or cope your/your child’s/your sibling’s
cancer?
- What information do you look for about cancer?
- What kind of information or features do you expect to see in any apps for
pediatric oncology patients and their families? (Ask medical professionals only)
Show site – First impressions (15-20 minutes):
- What are your first impressions when you see the registration screen? And the
home screen?
- What do you think the app is for?
o What do you think of the site name, tagline, and logo?
- What is most appealing?
o What would you look at first?
o What do you expect to see?
- What is least appealing?
Use of app (10 minutes):
- What are you interested in trying?
- What do you think about the layout and navigation?
- Is it easy to use?
Following use of app (5-10 minutes):
- Did you find the app useful?
- What did you find attractive?
- What should we add/change/remove?
- Would you return to the app? (Why/why not?)
- Would you recommend the site to a friend or colleague?
APPENDIX B: PRIORITIZATION SCHEME (FORMATIVE EVALUATION)
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34
Ability to Change
1
A
Importance
B
C
i
2
Can be Changed with
Easy to Change;
Some Time;
Critical to Fix
Critical to Fix
Can be Changed with
Easy to Change;
Some Time;
Important to Fix
Important to Fix
Can be Changed with
Easy to Change;
Some Time;
Would be nice to fix
Would be nice to fix
3
Difficult to Change;
Critical to Fix
Difficult to Change;
Important to Fix
Difficult to Change;
Would be nice to fix
mHealth, defined by the National Institute of Health as the use of mobile and wireless
devices to improve health outcomes, health care services, and health research
ii
IDC Health Insights. (2014). IDC reveals health insights predictions for 2015. Retrieved
from http://www.idc.com/getdoc.jsp?containerId=prUS25262514
iii
Niksch, A.L. (2015). mHealth in pediatrics – Finding health care solutions for the next
generation. Retrieved from http://www.themhealth.org/article/view/5969/6667
iv
Ibid.
v
Niksch, A.L. (2015). mHealth in pediatrics – Finding health care solutions for the next
generation. Retrieved from http://www.themhealth.org/article/view/5969/6667
vi
Farr, C. (2015). Exclusive – Apple’s health tech takes early lead among top hospitals.
Retrieved from http://uk.reuters.com/article/2015/02/05/uk-apple-hospitals-exclusiveidUKKBN0L90FH20150205
vii
Niksch, A.L. (2015). mHealth in pediatrics – Finding health care solutions for the next
generation. Retrieved from http://www.themhealth.org/article/view/5969/6667
viii
Ibid.
ix
Ibid.
x
Ibid
xi
National Cancer Institute. (2014). Cancer in Children and Adolescents. Retrieved from
http://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet#r1
xii
National Cancer Institute. (2015). Childhood Cancers. Retrieved from
http://www.cancer.gov/types/childhood-cancers
xiii
American Cancer Society. (2015). What are the key statistics for childhood cancer?
Retrieved from http://www.cancer.org/cancer/cancerinchildren/detailedguide/cancer-inchildren-key-statistics
xiv
American Cancer Society. (2015). “What are the key statistics for childhood cancer?”
Retrieved from http://www.cancer.org/cancer/cancerinchildren/detailedguide/cancer-inchildren-key-statistics
xv
Hewitt, M., Weiner, S.L., Simone, J.V.. (2003). IOM and NRC (Eds.). Childhood
cancer survivorship: Improving care and quality of life. Washington, DC: The National
Academies Press
xvi
Committee on Psychosocial Services to Cancer Patients/Families in a Community
Setting. (2008). Aderl, N.E. & Page, A.E.K. (Eds.). Cancer care for the whole patient:
Meeting psychosocial health needs. Washington, DC: The National Academies Press
IGNITE
xvii
Hewitt, M., Weiner, S.L., Simone, J.V.. (2003). IOM and NRC (Eds.). Childhood
cancer survivorship: Improving care and quality of life. Washington, DC: The National
Academies Press
xviii
Antonarakis, E. S., Evans, J. L., Heard, G. F., Noonan, L. M., Pizer, B. L., & Hain, R.
D. (2004). Prophylaxis of acute chemotherapy-induced nausea and vomiting in children
with cancer: What is the evidence? Pediatric Blood and Cancer, 43(6), 651-658
xix
Moore, J. B., & Beckwitt, A. E. (2004). Children with cancer and their parents: Selfcare and dependent-care practices. Issues in Comprehensive Pediatric Nursing, 27(1), 117.
xx
Rheingans, J. (2007). A systematic review of nonpharmacologic adjunctive therapies
for symptom management in children with cancer. Journal of Pediatric Oncology
Nursing, 24(2): 81–94
xxi
Windich-Biermeier, A., Sjoberg, I., Dale, J.C., Eshelman, D., & Guzzetta, C.E. (2007).
Effects of distraction on pain, fear, and distress during venous port access and
venipuncture in children and adolescents with cancer. Journal of Pediatric Oncology
Nursing, 24, 8-19
xxii
Molassiotis, A., & Cubbin, D. (2004). ‘Thinking outside the box’: Complementary
and alternative therapies use in pediatric oncology patients. European Journal of
Oncology Nursing,8(1), 50–60
xxiii
Gershon, J., Zimand, E., Lemos, R., Rothbaum, B. O., & Hodges, L. (2003). Use of
virtual reality as a distractor for painful procedures in a patient with pediatric cancer: A
case study. Cyberpsychology and Behavior, 6(6):657-661
xxiv
Ibid.
xxv
Gershon, J., Zimand, E., Pickering, M., Rothbaum, B. O., & Hodges, L. (2004). A
pilot and feasibility study of virtual reality as a distraction for children with cancer.
Journal of the American Academy of Child and Adolescent Psychiatry, 43(10): 12431249.
xxvi
Redd, W.H., Jacobsen, P.B., Die-Trill, M., Dermatis, H., McEvoy, M., & Holland,
J.C. (1987) Cognitive/Attentional Distraction in the Control of Conditioned Nausea in
Pediatric Cancer Patients Receiving Chemotherapy. Journal of Consulting and Clinical
Psychology, 55(3): 391-295
xxvii
Ibid.
xxviii
Cooper, V. & Nelson, R. (2015). The impact of play and recreation on reported pain
levels in children with cancer. Therapeutic Recreation Journal, XLIX (1), 84-86
xxix
IDC Health Insights. (2014). IDC reveals health insights predictions for 2015.
Retrieved from http://www.idc.com/getdoc.jsp?containerId=prUS25262514
xxx
Bruce, M. (2006). A systematic and conceptual review of posttraumatic stress in
childhood cancer survivors and their parents. Clinical Psychology Review, 26(3): 233-256
xxxi
Committee on Psychosocial Services to Cancer Patients/Families in a Community
Setting. Adler, N.E. & Ann, E.K. (Eds.) Cancer care for the whole patient: Meeting
psychosocial health needs. The National Academies Press: Washington, D.C.
http://www.ncbi.nlm.nih.gov/books/NBK4015/pdf/Bookshelf_NBK4015.pdf
xxxii
A nonprofit organization dedicated to assisting children and families living with
childhood cancer.
35
IGNITE
xxxiii
Cundari. (2013). Pain Squad mobile application. Retrieved from
http://www.cundari.com/cases/sick-kids-pain-squad/
36