Participants
A sample of 87 families were included in the final analyses (on treatment n = 40; off treatment n = 47). Patient participants (62.4% male) were on average 11.98 years of age at participation. The most common diagnoses were leukemia and lymphoma (45.9%), followed by solid tumors (29.4%) and malignancies of the central nervous system (15.3%). Parent respondents included mothers (91.9%), fathers (7.0%), and one grandparent (1.2%). Of 186 families identified as eligible and invited to participate (on treatment n=76; off treatment n=110), 50 declined (on treatment n=19; off treatment n=31) due to disinterest in study (n=33), no time to participate (n=11), and already participating in too many studies (n=6). An additional forty-eight consenting families did not return their survey package (on treatment n=14; off treatment n=27) or returned packages with incomplete PATrev or CPC/ESAS-r data (on treatment n=3; off treatment n=5). There were no significant differences between participants and those who declined or did not complete packages with respect to gender, age, or age at diagnosis.
For families undergoing active treatment, 27 (67.5%) were classified into the universal risk category, 12 (30.0%) were classified into the targeted risk category, and one family (2.5%) was classified into the clinical risk category. For those families who had completed therapy, 32 (68.1%) were classified into the universal risk category, 11 (23.4%) were classified into the targeted risk category, and four (8.5%) were classified into the clinical risk category (see Figure 1). Additional patient and family demographics can be found in Table 1.
Edmonton Symptom Assessment System
Out of a possible score of 100, children and adolescents in the universal risk category reported an average symptom summary score of 11.02. The most highly rated symptom was tiredness (M = 2.26, SD = 2.05), followed by lack of appetite (M = 1.55, SD = 2.18), and anxiety (M = 1.45, SD = 2.69). Those in the targeted risk category reported an average symptom summary score of 20.42. The most highly rated symptom was tiredness (M = 3.37, SD = 2.09), followed by pain (M = 3.00, SD = 4.45), and wellbeing (M = 2.47, SD = 2.46). Finally, those in the clinical risk category reported an average symptom summary score of 25.20. The most highly rated symptom was tiredness (M = 4.80, SD = 2.39), followed by anxiety (M = 4.00, SD = 4.62) , and pain (M = 3.00, SD = 3.94). Additional symptom information can be found in Table 2.
Results of the multilevel model indicated that PATrev risk category was significantly associated with survivors’ self-reported ESAS-r summary score F (2, 63.07) = 4.57, p = .014. Exploring further, there was a significant difference in ESAS-r summary scores between those in the universal and targeted risk categories (b = 8.01, SE = 3.83, 95% CI = 0.34, 15.67), as well as between those in the universal and clinical risk categories (b = 16.27, SE = 6.44, 95% CI = 3.39, 29.14), such that those in the universal risk category had significantly lower symptom burden. The difference between summary scores for those in the targeted and clinical risk categories did not reach significance (b = 8.26, SE = 6.88, 95% CI = -5.49, 22.01).
Canadian Problem Checklist
Of a possible 21 concerns, parents in the universal risk category endorsed, on average, 2.63 (SD = 3.18). The most common concerns in this group were fears (n = 22, 37.3%) and sleep (n = 15, 25.4%). Parents in the targeted risk category endorsed 6.43 items on average. Their most common concerns were fears (n = 17, 73.9%), followed by sleep (n = 15, 65.2%), sadness (n = 15, 65.2%), and work/school (n = 15, 65.2%). Finally, parents in the clinical risk group endorsed 8.50 concerns on average. Their most common concerns were fears (n = 4, 80.0%), and sleep (n = 4, 80.0%). Additional information about concerns endorsed can be found in Table 2.
Results of the multilevel model indicated that PATrev risk category was significantly associated with parent-reported CPC summary score F (2, 82.06) = 16.79, p < .001. Exploring further, there was a significant difference in CPC summary scores between those in the universal and targeted risk categories (b = 3.72, SE = 0.80, 95% CI = 2.14, 5.30), as well as between the universal and clinical risk categories (b = 6.73, SE = 1.68, 95% CI = 3.40, 10.07), such that those in the universal risk category endorsed significantly fewer concerns than those in the targeted or clinical risk categories. The difference between summary scores for those in the targeted and clinical risk categories did not reach significance (b = 3.01, SE = 1.75, 95% CI = -0.48, 6.50).