Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study

Abstract

Purpose: Thousands of children are living with advanced cancer; yet patient-reported outcomes (PROs) have rarely been used to describe their experiences. We aimed to describe symptom distress in 104 children age 2 years or older with advanced cancer enrolled onto the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study (multisite clinical trial evaluating an electronic PRO system).

Methods: Symptom data were collected using age- and respondent-adapted versions of the PediQUEST Memorial Symptom Assessment Scale (PQ-MSAS) at most once per week. Clinical and treatment data were obtained from medical records. Individual symptom scores were dichotomized into high/low distress. Determinants of PQ-MSAS scores were explored using linear mixed-effects models.

Results: During 9 months of follow-up, PQ-MSAS was administered 920 times: 459 times in teens (99% self-report), 249 times in children ages 7 to 12 years (96% child/parent report), and 212 times in those ages 2 to 6 years (parent reports). Common symptoms included pain (48%), fatigue (46%), drowsiness (39%), and irritability (37%); most scores indicated high distress. Among the 73 PQ-MSAS surveys administered in the last 12 weeks of life, pain was highly prevalent (62%; 58% with high distress). Being female, having a brain tumor, experiencing recent disease progression, and receiving moderate- or high-intensity cancer-directed therapy in the prior 10 days were associated with worse PQ-MSAS scores. In the final 12 weeks of life, receiving mild cancer-directed therapy was associated with improved psychological PQ-MSAS scores.

Conclusion: Children with advanced cancer experience high symptom distress. Strategies to promote intensive symptom management are indicated, especially with disease progression or administration of intensive treatments.

Trial registration: ClinicalTrials.gov NCT01838564.

Fig 1.

The Pediatric Quality of Life and Evaluation of Symptoms Technology CONSORT diagram for 9 months of follow-up. (*) One site did a preassessment of eligibility; patients from that site reported here were all eligible. (†) These patients did not receive intervention or control procedures. (‡) Children were eliminated when in remission and off treatment for more than 6 months (§) Two patients died after dropout and within the 9-month follow-up period (one patient in each study arm).

Fig 2.

Symptom prevalence and distress observed in the full cohort of children with advanced cancer enrolled in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study and in the subgroup of children who died and had completed end-of-life PediQUEST surveys (PQ-Surveys). (A) Prevalence (full bar) and level of distress (high/low) reported in (A) the full cohort of 920 PQ-Surveys completed during 9 months of follow-up (N = 104) and (B) the subgroup of 73 PQ-Surveys completed in the last 12 weeks of life (n = 25 children).

Fig 3.

Boxplot of Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study Memorial Symptom Assessment Scale (PQ-MSAS) scores observed in the full cohort of children with advanced cancer enrolled in the PediQUEST study and in the subgroup of children who died and had completed end-of-life PediQUEST surveys (PQ-Surveys). Boxplots of PQ-MSAS physical and psychological subscale scores as well as PQ-MSAS total scores in (A) the 920 PQ-Surveys completed by the full cohort during 9 months of follow-up (N = 104 children) and (B) the subgroup of 73 PQ-Surveys completed in the last 12 weeks of life (n = 25 children).