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High Symptom Distress in Children With Advanced Cancer

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Key Points

  • Symptoms were common and were associated with high distress levels in children with advanced cancer.
  • Female sex, presence of brain tumor, more-recent disease progression, and receipt of moderate- or high-intensity cancer therapy in the prior 10 days were associated with worse symptom scores.

As reported in the Journal of Clinical Oncology by Wolfe et al, the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study found a high prevalence of disease symptoms in children with advanced cancer, with most symptoms being associated with high distress level.

Study Details

In the multisite trial, which used an electronic patient-reported outcome system, symptom data were collected using age- and respondent-adapted versions of the PediQUEST Memorial Symptom Assessment Scale (PQ-MSAS) at most once per week in 104 children aged ≥ 2 with advanced cancer. The scale includes total score, physical score, and psychological score, with higher score indicating worse outcome. Symptom scores were categorized by high or low distress.

Overall, 49% of patients were female, 89% were white, 48% were aged > 12 years, and 56% had solid tumors. Median duration of disease was 27 months and median time since most recent progression was 6 months. During follow-up, 26 children died (25%).

High Distress Levels

During 9 months of follow-up, the PQ-MSAS was administered 920 times, consisting of 459 times in teens (99% self-report), 249 times in children aged 7 to 12 years (96% child/parent report), and 212 times in those aged 2 to 6 years (parent reports). The most common symptoms reported were pain (48%, with high distress in 39%), fatigue (46%, 39% high distress), drowsiness (39%, 27% high distress), irritability (37%, 27% high distress), nausea (35%, 24% high distress), and anorexia (32%, 26% high distress).

In the 73 surveys administered in the last 12 weeks of life, the most common symptoms were pain (62%, 58% high distress), drowsiness (50%, 40% high distress), fatigue (49%, 41% high distress), nausea (42%, 34% high distress), irritability (39%, 30% high distress), diarrhea (38%, 31% high distress), vomiting (37%, 24% high distress), and  anorexia (36%, 36% high distress).

Factors Associated With Worse Symptoms

Worse PQ-MSAS scores were associated with female sex (P = .042 for total score, P = .029 for psychological score), presence of brain tumor (P = .010 for psychological score), experiencing more recent disease progression (global P = .002 for total score, global P = .024 for psychological score; P <.05 for all three scores for progression within 10 days), and receiving moderate- (P = .002, P  = .005, and P = .041 for total, physical, and psychological scores) or high-intensity cancer therapy (P < .001, P < .001, and P = .030 for total, physical, and psychological scores) in the prior 10 days.

In the final 12 weeks of life, higher total and physical PQ-MSAS scores were found in girls vs  boys, and disease progression in the prior 10 days vs > 60 days was associated with higher physical scores. Patients who received mild cancer therapy at the end of life had better PQ-MSAS psychological scores vs those receiving no therapy.

The investigators concluded: “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.”

The PediQUEST study was supported by the National Cancer Institute grant, Charles H. Hood Foundation, and American Cancer Society.

Joanne Wolfe, MD, MPH, of Dana-Farber Cancer Institute, is the corresponding author for the Journal of Clinical Oncology article.

For full disclosures of the study authors, visit jco.ascopubs.org.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.


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