the computerized symptom capture tool (c-scat)
TRANSCRIPT
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, FAANUniversity of Washington
Speaker Disclosure Statement
The authors have no financial relationships to disclose
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
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)
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)
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
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)
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
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
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
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
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
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
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
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
Results - Acceptability
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
0 10 20 30 40 50 60 70 80 90 100
Percent of respondents in agreement
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
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”
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”
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”
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
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
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