1. Understanding Patient and Caregiver Perception of Posttraumatic Stress Symptoms
Draycen D. DeCator, Chelsea S. Rapoport, Tina Drossos, & Khalid I. Afzal
University of Chicago
Introduction
Methods
Table 1. Regression predicting self-report or patient PTSS
Predictors ΔR2 β at step Final β
Step 1 (R2) 0.34
Age -0.10 -0.18
Gender 0.33 -0.04
Step 2 (ΔR2) 0.30
Treatment Anxiety -0.36 -0.20
Perceived Physical Appear. -0.38 -0.16
Step 3 (ΔR2) 0.17
Patient worry -0.61*
Results
Discussion
References
Caucasia
n
63%
African
America
n
23%
Asian
14%
8-12yo
25%
13-17yo
29%
18-25yo
46%
Figure 1. Demographics of sample; left = patient age groups; right = patient race.
Note. Independent variables are all self-report; * p < .05.
Table 2. Regression predicting caregiver-report of patient PTSS
Predictors ΔR2 β at step Final β
Step 1 (R2) 0.01
Age -0.09 0.14
Gender 0.03 -0.12
Step 2 (ΔR2) 0.83
Treatment Anxiety -0.32 -0.31
Perceived Physical Appear. -0.67** -0.64*
Step 3 (ΔR2) 0.01
Patient worry -0.05
Note. Independent variables are all caregiver-report; * p < .05; ** p < .01.
Table 3. Regression predicting caregiver-report of caregiver PTSS
Predictors ΔR2 β at step Final β
Step 1 (R2) 0.03
Age 0.16 0.23
Gender 0.03 -0.05
Step 2 (ΔR2) 0.49
Physical Functioning 0.18 0.19
Psychosocial Functioning -0.83** -0.87*
Step 3 (ΔR2) 0.01
Patient worry 0.12
Note. Independent variables are all caregiver-report; * p < .05; ** p < .01.
31 patient–caregiver dyads (19 with youth eight and older, with complete data) have been
recruited from a Midwestern academic medical center. The total sample is currently 45.2%
female, 22.6% African American, 64.5% Caucasian, 9.7% Asian, and 3.2% multi-racial. All
patients have received an initial diagnosis of cancer within the past year, have not had any
relapses, and fluently speak English. Data were collected at a single time point from both
patient and caregiver, in the form of questionnaires and a structured diagnostic interview. At
the time of collection, the average patient age was 14.81 (SD = 5.19). All analyses control for
age and gender.
Data for the current study were obtained using the Pediatric Quality of Life (PedsQL; Varni,
Burwinkle, Seid, & Skarr, 2003) survey, UCLA Post-Traumatic Stress Disorder Index (PTSDI;
Pynoos, Rodriguez, Steinberg, Stuber, & Frederick, 1998), and the PTSD Checklist - Specific
(PCL-S; Weathers, Litz, Herman, Huska, & Keane, 1993). Scoring procedures were different
for participants below the age of eight, and data is currently limited within this age group in
the current study, so all analyses are conducted with dyads that have a patient who is eight
or older.
In the context of pediatric cancer diagnosis/treatment, patients rarely face significant
psychopathologies such as PTSD (Patenaude & Kupst, 2005). However, there is evidence that
diagnosis of a potentially terminal medical condition can be traumatizing for families
(Landolt et al., 2002). Despite youth rarely meeting criteria for PTSD, they may experience
Post-Traumatic Stress Sympoms (PTSS) due to Pediatric Medical Traumatic Stress (Price,
Kassam-Adams, Alderfer, Christofferson, & Kazak, 2016). Unfortunately, it is unclear how
these potentially traumatic events lead to PTSS. Higher worry has been found to predict
higher PTSS scores (Bardeen, Fergus, & Wu, 2012), suggesting worry could act as a mediator.
Of note, caretakers of pediatric cancer patients experience an elevated level of clinical
psychological distress that is likely to persist even five years after the diagnosis (Wijnberg-
Williams, Kamps, Klip, & Hoekstra-Weebers, 2006). However, as suggested by Martin, Ford,
Dyer-Friedman, Tang, and Huffman (2004), it is unclear what factors are related to
posttraumatic stress symptomatology and how parents perceive posttraumatic stress in their
children. In order to determine the relevant factors when assessing PTSS, it is important to
take reporters into consideration. Discrepancies between parent and child report have been
found in the medical context (Martin et al., 2004). This may in part be due to parents
focusing primarily on externalizing factors (Herjanic & Reich, 1982), whereas children may
focus more on internalizing factors.
In order to help clarify the development of PTSS in these populations, the current study had
the following research questions:
Results
When patients were reporting about their own PTSS, only self-report of worry was
significant (β = -0.61, p < .05), and not self-report of treatment anxiety or perceived physical
appearance (Table 1). However, caregiver perceptions of youth PTSS were found to be
predicted by the caregiver’s report of the child’s perceived physical appearance (β = -0.63, p
< .05), but not caregiver report of patient’s treatment anxiety or worry (Table 2). Finally,
caregiver reports of their own PTSS were examined in relation to child functioning. Caregiver
PTSS was only predicted by caregiver report of psychosocial functioning (β = -0.87, p < .05),
but not physical functioning (Table 3).
Evidence for patient worry as a mediator was not found. However, the identified direct
effects were consistent with previous studies. Caregiver-report of PTSS was much more
heavily influenced by an external (i.e., visible) factor, compared to internal (i.e., invisible)
factors. Patient-report of PTSS, on the other hand, was predicted more by internal factors
than external, suggesting they are more aware of their feelings whereas caregivers only see
the external factors.
Of note, caregiver-report of their own PTSS was predicted by psychosocial functioning, a
variable that can be considered as representing both internal and external factors. Most
previous literature on parent-child discrepancies in reporting have focused on child-related
factors, and there is a lack of knowledge about how caregivers report about themselves in
the context of their child’s symptoms. Understanding this discrepancy is important to help
address the main sources of PTSS most effectively in therapy.
However, there are a number of limitations to the current study:
1. The sample size was small, though this is common in studies of similar populations.
2. The population is exclusively from the Midwest, and primarily represents those living in
an urban area, so it is unclear how representative the sample is of the general
population.
3. The sample may consist primarily of youth with better prognoses, as they are often more
willing to participate in research, so the results may not generalize to patients/caregivers
throughout this specific population.
4. The current analyses do not take into account how much time has passed since the child
was diagnosed.
5. Mediation and causal analyses are best done longitudinally, and the current study was
cross-sectional.
Future studies need to be conducted with a more diverse sample, and looking at variables
across time.
What factors are related
to PTSS?
Is worry a mediator?
Does assessment of
PTSS vary between
patient and caregiver?
Multiple regression analyses were conducted to answer the research questions for the
current study. The initial interest was to determine if worry acted as a mediator between
treatment anxiety and/or perceived physical appearance (as a visual indicator of illness) and
PTSS. The Baron and Kenny (1986) approach was used to test for this mediation. Separate
regressions were run for each outcome. Age and gender were entered as controls in the first
step, followed by treatment anxiety and perceived physical appearance (or with parent PTSS,
physical and psychosocial functioning). Worry was entered in the last step to see if
significance of the main effects was altered. No evidence of worry as a mediator was found.
Bardeen, J. R., Fergus, T. A., & Wu, K. D. (2012). The interactive effect of worry and intolerance of uncertainty on posttraumatic
stress symptoms. Cognitive Therapy and Research, 37(4), 742–751.
Baron, R. M., & Kenny, D. A. (1986). The moderator-mediator variable distinction in social psychological research: Conceptual,
strategic, and statistical considerations. Journal of Personality and Social Psychology, 51(6), 1173–1182.
Landolt, M. A., Ribi, K., Laimbacher, J., Vollrath, M., Gnehm, H. E., & Sennhauser, F. H. (2002). Brief report: Posttraumatic Stress
Disorder in parents of children with newly diagnosed type 1 diabetes. Journal of Pediatric Psychology, 27(7), 647–652.
Herjanic, B., & Reich, W. (1982). Development of a structured psychiatric interview for children: Agreement between child and
parent on individual symptoms. Journal of Abnormal Child Psychology, 10(3), 307–324.
Martin, J. L., Ford, C. B., Dyer-Friedman, J. D., Tang, J., Huffman, L. C. (2004). Patterns of agreement between parent and child
ratings of emotional and behavioral problems in an outpatient clinical setting: When children endorse more problems.
Journal of Developmental and Behavioral Pediatrics, 25(3), 150–155.
Patenaude, A. F., & Kupst. M. (2005). Psychosocial functioning in pediatric cancer. Journal of Pediatric Psychology, 30(1), 9–27.
Price, J., Kassam-Adams, N., Alderfer, M. A., Christofferson, J., & Kazak, A. E. (2016). Systematic review: A reevaluation and update
of the integrative (trajectory) model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 41(1), 86–97.
Pynoos, R., Rodriguez, N., Steinberg, A., Stuber, M., & Frederick, C. (1998). UCLA PTSD index for DSM-IV. Unpublished manuscript,
UCLA Trauma Psychiatry Service.
Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility,
reliability, and validity. Ambulatory Pediatrics, 3(6), 329–341.
Weathers, F. W., Litz, B. T., Herman, D. S., Huska, J. A., & Keane, T. M. (1993). The PTSD Checklist (PCL): Reliability, validity, and
diagnostic utility. In Annual Convention of the International Society for Traumatic Stress Studies. San Antonio:
International Society for Traumatic Stress Studies.
Wijnberg‐Williams, B. J., Kamps, W. A., Klip, E. C., & Hoekstra‐Weebers, J. E. (2006). Psychological adjustment of parents of
pediatric cancer patients revisited: Five years later. Psycho‐Oncology, 15(1), 1–8.