The Computerized Symptom Capture Tool (C-SCAT) is a novel iPad application designed to explore symptoms and symptom clusters from the perspective of adolescents and young adults with cancer. The study tested the feasibility and acceptability of using C-SCAT with 72 adolescents and young adults receiving chemotherapy. Participants were able to complete C-SCAT within 25 minutes on average. The majority found it an acceptable way to report their symptoms and felt it increased their self-awareness. Most participants identified multiple symptoms and some described symptom clusters. The study demonstrates the potential for C-SCAT to generate rich data on individual symptom experiences to inform symptom management.
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The Computerized Symptom Capture Tool (C-SCAT)
1. The Computerized Symptom Capture Tool
(C-SCAT): A Novel Approach to Exploring
Symptoms and Symptom Clusters In
Adolescents and Young Adults with Cancer
Lauri Linder, PhD, APRN, CPON Catherine Fiona Macpherson, PhD, RN, CPON
University of Utah College of Nursing Seattle Children’s Hospital
Primary Children’s Hospital University of Washington
Kristin Stegenga, PhD, RN, CPON Suzanne Ameringer, PhD, RN
Children’s Mercy Hospital Virginia Commonwealth University
Jeanne Erickson, PhD, RN, AOCN Pamela Hinds, PhD, RN, FAAN
University of Virginia Children’s National Medical Center
Nancy Fugate Woods, PhD, RN, FAAN
University of Washington
3. Adolescents and Young Adults with
Cancer
Approximately 70,000 adolescents and young adults newly
diagnosed each year (National Cancer Institute, 2012)
15 to 39 years of age (National Cancer Institute, 2012)
Cancer types distinct from older and younger age groups
Developmental characteristics
Adolescents physically maturing, achieving independence from
parents, and making significant decisions related to education
and relationships
Young adults achieving financial, residential, and emotional
independence; assuming adult roles
Both groups with access to electronic media and often prefer
computers to paper for completing health surveys
4. Defining Symptom …
“… a subjective experience reflecting changes in the
biopsychosocial functioning, sensations, or cognition of an
individual.” (Harver & Mahler, 1990)
“The gold standard for the study of symptoms is based on
the perception of the individual experiencing the symptom
and his/her self-report.” (Dodd et al., 2001)
5. Symptoms in Adolescents and Young
Adults with Cancer
Adolescents and young adults receiving treatment for
cancer report up to 12 concurrent symptoms (Baggott et al.,
2010; Collins et al., 2000; Enskar & von Essen 2008; Hedstrom et al., 2006;
Hedstrom et al., 2004; Yeh et al., 2009; Zhukovsky et al., 2009)
Number of symptoms and associated symptom distress
greatest while receiving treatment (Collins et al., 2000; Enskar &
von Essen, 2007; Hinds et al., 2009)
Severity of symptoms influences decision-making related
to treatment (Docherty, Sandelowski, & Preisser, 2006; Woodgate, Degner,
& Yanofsky, 2003)
6. What is a Symptom Cluster?
Two or more symptoms that are related to each other
and that occur together (Kim et al., 2005)
Relationships between the symptoms are associative and
not necessarily causal
May share a common etiology or underlying mechanism
(Barsevick, 2007)
Hockenberry & Hooke, 2007
7. Why Study Symptom Clusters vs.
Individual Symptoms?
Identifying and understanding symptom clusters…
Informs effective symptom management interventions (Kim
et al., 2005; Miaskowski, Dodd, & Lee, 2004)
May lead to prevention and relief of the complex and/or
synergistic effects of multiple symptoms on patient
outcomes (Kim et al., 2005; Miaskowski, Dodd, & Lee, 2004)
8. Symptom Clusters in Adolescents and
Young Adults with Cancer
Symptom cluster research is limited
Adolescents frequently included in study samples with
school-age children
Young adults frequently included in study samples with
older adults
Research exploring whether and how AYAs cluster
their symptoms or the meaning they attach to their
symptoms and symptom clusters is limited
9. Approaches to Symptom Cluster
Research
Dominant approaches for studying symptom clusters
include multivariate statistical methods to identify
clusters from patient-reported symptoms (Baggott et al.,
2012; Hockenberry et al., 2011; Miaskowski et al., 2006; Yeh et al., 2008)
Symptom cluster heuristics is an alternate
methodological approach that explores patients'
interpretation and meaning of the symptom cluster
experience
10. Aims
Examine feasibility and acceptability of using the
Computerized Symptom Capture Assessment Tool
(C-SCAT) for exploring symptoms and symptom
clusters in AYAs with cancer
Describe the symptoms and symptom clusters
from the perspectives of AYA with cancer
11. Participants
72 AYAs receiving
myelosuppressive
chemotherapy
40 adolescents (median 15
years; range 13-18)
32 young adults (median 21.5
years; range 19-29)
Median of 3 months since
diagnosis (range 1 – 156)
57% male; 79% White/Non-
Hispanic
ALL
AML
Hodgkin
lymphoma
Non-
Hodgkin
lymphoma
Sarcoma
Brain
tumor
Other
solid
tumor
12. Study Procedure
Participants completed the C-SCAT app with a study team
member present 24 to 96 hours after initiating a
chemotherapy cycle
Participants completed a questionnaire delivered via the
iPad addressing the app’s acceptability
Ethical considerations
IRB approval granted from the five data collection sites
Parental permission and participant assent obtained from
participants 13 – 17 years
Informed consent obtained from participants 18 years and
older
13. Goals of the C-SCAT
Integrate innovative and developmentally meaningful
technology in a novel approach to study symptoms and
symptom clusters in AYAs with cancer
Elicit interpretive guidance from adolescents as to the
meaning of their symptoms and symptom clusters by allowing
the AYAs to identify:
Symptoms, possible causes, alleviating/exacerbating factors,
attempted self-management strategies, and effects of symptoms
on daily activities
Perceived causal and temporal relationships among symptoms
Names for symptom clusters and key symptoms within clusters
14. Steps to C-SCAT Completion
Drag and drop symptoms experienced in past 24
hours into designated area of screen
Identify symptom cause, characteristics, attempted
self-management, and effect on daily activities
Draw lines and arrows to indicate relationships
between symptoms
Draw boxes around groups of related symptoms
Identify priority symptom within each group
15. Results - Feasibility
100% fully completed C-SCAT within 24 – 96 hours of
starting a new chemotherapy cycle
Mean of 25 minutes to complete the app (SD=17; range
2 – 83)
70% indicated final image was accurate representation
of their symptom experience
3 cases of technical difficulties with lost/missing data
Participants completed app with minimal questions for
clarification
16. Results - Acceptability
0 10 20 30 40 50 60 70 80 90 100
Acceptable amount of time to complete app
Bored while completing the app
App asked important questions
Easy to type or draw in the app
App instructions easy to follow
App questions clear or very clear
Percent of respondents in agreement
17. Results - Acceptability
Increased self-awareness of symptom experience
Appreciation for ability to create pictorial representation of
symptoms
Preference for using technology over paper and pencil
instruments
Familiarity with technology
Novelty of the application
Appreciation of speed and flexibility for editing responses
Ease of using touchscreens rather than writing responses
Suggestions for improvement
Additional symptoms
Focused questions
More engaging color graphics
18. Results - Acceptability
How did it feel to think about your symptoms while
completing the app?
“It made me understand my own symptoms a little better,
actually”
“It was fine. It certainly didn’t make my symptoms worse.”
“It was kind of hard because I’ve had so many different
symptoms that I can’t remember if they happened within the
time period you asked about.”
“Not good to [be] reminded [of] all [the] bad things.”
“Painful”
“Sucky”
19. Results - Acceptability
83% expressed a preference for the app vs a paper-
and-pencil version
“Doing it on paper would be boring and a lot more work to do.
And most people my age are lazy and wouldn't want to do it.”
“It's incredible technology, there's nothing exciting about paper”
“No erasing, and the iPad had autocorrect, and also I’m used to
typing on touchscreens.”
“Because of my hands and neuropathy easier to do on iPad”
20. Results – Symptoms & Symptom Clusters
Median of 8 symptoms
(range 1-21)
Most frequently reported individual symptoms
Nausea, lack of appetite, lack of energy, feeling drowsy
65% of AYAs identified symptom clusters
(median 2 clusters; range 1-4)
Cluster name examples
“chemo effects,” “not fun treatment,” “troublesum (sic),” “crap”
21. Future Directions
Refinements to the C-SCAT app
Additional symptoms, more engaging graphics, more focused
questions
Address technical difficulties
Use the C-SCAT to facilitate a personalized approach
to symptom management as a mobile health resource
Enhance adolescent-healthcare provider communication
Prioritize symptom management interventions
22. Conclusion
C-SCAT shifts paradigm of symptom and symptom cluster
assessment from deductive to inductive approach that considers
how individuals interpret and give meaning to symptoms
C-SCAT demonstrated:
feasibility
acceptability
capacity to generate rich data reflecting the individual’s experience
C-SCAT has potential for use in clinical care to foster patient-
provider communication about complex symptom experiences to
facilitate symptom management:
for AYAs with cancer
across other age and disease groups
23. Funding for adolescents at Primary Children’s Hospital, Seattle Children’s Hospital, and Children’s Mercy Hospital
St. Baldrick’s Foundation Supportive Care Grant 2011-2013 (Linder, PI)
Funding for young adults:
Primary Children’s Hospital
University of Utah College of Nursing Faculty Research Grant (Linder, PI);
Seattle Children’s Hospital
Seattle Children’s Guild Association Teen Cancer Grant (Macpherson, PI);
Children’s Mercy Hospital
Hyundai Hope on Wheels {(Stegenga), Fulbright, PI},
University of Virginia Health System
University of Virginia School of Nursing (Erickson, PI);
Virginia Commonwealth University Health System
Grant # P30 NR011403 Center of Excellence for Biobehavioral Approaches to Symptom Management; NINR, NIH
{(Ameringer), Grap, PI}
C-SCAT Programming: Intermountain Healthcare Homer Warner Center for Informatics Research
Acknowledgements