Paper Presentation: Symptoms Across the Cancer Continuum— Comparison of Symptom Reports Among Children with Advanced Cancer and Their Parents (209-3)

4:10 – 4:30 pm Wednesday, September 2

Using patient-reported outcomes to elicit a child’s symptom experience is the gold standard; however, little empirical evidence exists demonstrating consistent integration of self-report of physical and psychological symptoms across clinical settings. Additionally, studies have revealed discordance among children and parents for symptom reporting during cancer treatment.

Limited studies have examined the difference in symptom reporting between children with advanced cancer and their parents. The purpose of this subanalysis was to compare symptom scores between children with advanced cancer and their parents. A multisite prospective repeated measures design was employed. The abbreviated PediQUEST symptom scale was administered via an electronic device to measure 11 symptoms every 2 weeks up to 62 weeks in children with advanced cancer. Descriptive statistics were calculated to describe sample characteristics and symptom prevalence. Values for individual symptom domains were translated from categorical to continuous variables (0-100) scale and averaged to reflect a symptom mean score. To test for an effect of the individual completing the symptom assessment (child self-report or parent proxy report), generalized linear mixed-effects models were used. Children and parents both reported pain, fatigue, nausea, and sleeping difficulties as the most frequently occurring symptoms throughout the study period. Parents overestimated the presence of symptoms and had higher symptom mean scores of all symptoms except shortness of breath. Parents significantly overestimated symptoms compared to children for fatigue, feeling nervous, nausea, feeling sad, and lack of appetite. Scores for the total scale and physical and psychological subscales were also significantly higher for parent mean scores. Despite findings that parents over-report the presence of symptoms, our findings also indicate that parents may designate lower symptom domain scores when symptoms are present. The results of the study provide further evidence to support that parents overestimate symptoms.

Kathleen Montgomery, PhD RN PCNS-BC CPHON®
Jessica Ward, PhD MPH CPNP RN
CNE Hours: