Psychosocial Needs/
Distress of AYA Oncology
Patients
Andrea Johnson, MSW, RSW
PhD Student- UBC
Why Adolescents?
 Significant physical, psychological, emotional, social, vocational
growth during AYA years (Abrams, Hazen, & Penson, 2007; Hollis
& Morgan, 2001; Woodgate, 2006).
 Dichotomy of care (Fernandez, C., Fraser, G., Freeman, C.,
Grunfeld, E., Gupta, A., Mery, L.S.,…Schacter, B., 2011; Bleyer,
W.A. & Barr, R.D, 2007).
 The ‘Lost Tribe’ (Fernandez & Barr, 2006).
 Can be a complex population to care for
Psychosocial Challenges
 Independence and autonomy
 Peer relationships/dependence on family
 Changes in physical appearance
 Self-Esteem; Identity
 Sexuality and Fertility
 Future-planning
 Fears and difficult events within cancer (Hedstrom, 2007)
 But positive experiences too! (Bellizi et al, 2012; Karian et al,
1995)
Identity Development
 “You’re no longer that person
you used to be. The day
you’re told that you have
cancer, you’re no longer that
person you were a second
ago.”
Body Image & Self-Esteem
 “Before treatment, I was a
cool kid in high school. I
had friends, everything
was good. . . And then
coming back, I had this
thin hair, I was pale, I was
overweight. I was
walking with 2 canes and
limping and hunched over.
I was different.”
Interrupted Lives
 I find I matured beyond my
years but I’m 2 years younger
than everyone else in a sense.
I can’t drive yet, I don’t have a
job, I haven’t graduated school
yet. All my friends are
working, going to school,
driving, they have boyfriends.
I mean they’re having sex and
I just can’t relate to any of
this.”
Adolescent Oncology Narratives
 “Teens definitely need different care than kids… we’re struggling severely
with our identity already, you throw cancer in the mix… and that just
messes it up even more.”
 “Sometimes we want to cry… we are not showing it.”
 “Sometimes doctors and nurses don’t get it… our world is very
small…we need friends around us who understand.”
 “It’s the smaller picture we care about (how this is affecting my life right
now!) as opposed to the bigger picture.”
 “Get to know me outside of my cancer.”
 “You can’t treat me like a kid but you also can’t treat me like an adult…
cancer is a very scary thing to go through.”
Distress:
 Distress: ‘a multifactorial, unpleasant emotional experience
of a psychological (cognitive, behavioral, emotional), social,
and/or spiritual nature that may interfere with the ability to
cope effectively with cancer, its physical symptoms, and its
treatment.’ (NCCN, 2012)
Distress- Adolescents with Cancer
 Adolescents and young adults with cancer may be at greater risk
for distress
 Argued that adolescents experience greater distress as compared to
children or adults (Kwak et al, 2013b)
 Inconsistent significant distress levels of AYA reported in
literature- ranging from 6-41% (Kwak et al., 2013).
 Adolescent distress is under-reported and under-addressed
 Distress is often not recognized by clinicians
 Distress can occur at any point along the cancer trajectory
Why Screen for Distress??
 Psychosocial screening and intervention can reduce levels of
cancer-related distress and improve QOL (Anderson, 2002;
Carlson & Bultz, 2004)
 Early identification of patients at risk for significant psychosocial
distress.
 Triaging psychosocial distress is not always accurate.
 Theory should be used to guide screening practice- developmental
theory provides good rationale
 Distress- ‘vital sign’
 Canadian Strategy for Cancer Control (2004) added ‘distress’ as a new
vital sign to accompany temperature, respiration, heart rate, blood
pressure, and pain
Challenges to Screening
 Psychosocial screening for adults with cancer- late 80’s (Zabora,
2012)
 Screening practices not yet widely adopted for adolescents with
cancer (despite extensive use in adult oncology)
 Lack of standardized screening measures for adolescent distress
 Does the measure actually measure what it is supposed to? How
can we best assess AYA distress?
 Effectiveness of measures to screen for distress- previous
studies focused on distress measures regardless whether
measures were accurately identifying AYA distress (Zebrack et
al., 2012)
 Barriers to implementation
Research Findings- Distress
 Adults: 20-40% of survivors experienced high levels of distress
throughout their illness- 30% at clinically significant levels of
distress (Carlson et al, 2004; Gao, Bennett, Stark, Murray, &
Higginson, 2010).
 AYA:
 Within 4 months and 12 months since diagnosis, 28% of AYA
oncology patients experienced distress that exceeded population
norms; improved at 6 months (Kwak et al., 2013a.).
 Levels of distress equally distributed regardless of diagnosis type,
severity or survival rate (Kwak et al., 2013a.).
 At 6 and 12 months, 39 % and 44%, of patients reported moderate to
severe levels of PTSS; 29% had PTSS levels of PTSD (Kwak et al.,
2013b.)
 Higher rates of PTSS were found in AYAs with higher-survival rates
(Kwak et al., 2013b)
 12% of AYAs reported clinically significant choronic distress
throughout 12 months since diagnosis; 15% reported delayed distress.
41% of patients reported un-met counseling needs- this was
significantly related to distress over time (Zebrack, Burg, & Vaitones,
2012)
 Adolescents often have un-met psychosocial needs (Kent et al., 2012)
Context for Developing Standardized
Distress Guidelines…
 No standardized screening practice for AYAs
 Lack of validated distress screening measures for adolescents with cancer
 Adolescents are experiencing distress that is not being screened and
resulting in unmet needs
 Adolescents are an under-researched population- we simply don’t know
much about their unique distress
 Recent studies have demonstrated that AYA distress exceeds population
norms
National AYA Distress Sub-Committee
 Sub-committee of the Canadian National Adolescent and Young
Adult Cancer Task Force
 Developed to address the gaps in the current context of distress
screening
 National psychosocial clinician committee member representation
 Pediatric and adult oncology clinician committee representation
 Research Project/Goal: AYA Distress Screening Tool Validation
 PIs: Dr. Anne Klassen (McMaster); Dr. Norma D’Agostino (PMH)
AYA Distress Screening Tool
Validation
 To assess the only validated distress screening tools for AYAs with
cancer (AUS)
 To adapt these screening tools (for on-treatment and off-treatment)
for use in Canada with AYAs 15-29 years old; English and French
versions
 Australian AYA Oncology Distress Screening Tool:
 Distress Thermometer (modified for AYA specific areas of
distress); separate versions for treatment and survivorship.
Pilot-tested in AUS and found to be valid.
 Clinical Assessment Questions
 Demographics
 Funding has been received from C17 for adaptation of this AUS
distress screening tool for AYAs 15-29 in Canada
 Current phase of the project: content validation
 Face validity qualitative interviews currently being conducted
in English and French (ON & QC)
 Next phase of project: field validation.
 Once completed and analyzed, large-scale field validation study
will be extended to sites across Canada
 The field test-data will be analyzed to identify items that represent
best indicators of distress based on performance against a
standardized set of psychometric criteria.
 Goal is to have a valid measure of AYA oncology distress.
 AYA oncology specific screening tool can enhance both research
and clinical practice with cancer.
 Will assist in development of a national screening program for
adolescents and young adults with cancer.
Where to from here?
 Distress is being under-screened yet many adolescents are
experiencing significant distress
 How best to screen for distress?? Goal of this project…
 Screening practice at your local adult oncology centre?
 BCCA (PSSCAN-R)
 Strengths/weaknesses of different screening measures
 Ask questions of this population…