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

TitleSymptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study.
Publication TypeJournal Article
Year of Publication2015
AuthorsWolfe J, Orellana L, Ullrich C, E Cook F, Kang TI, Rosenberg AR, Geyer R, Feudtner C, Dussel V
JournalJ Clin Oncol
Volume33
Issue17
Pagination1928-35
Date Published06/2015
ISSN1527-7755
KeywordsAdolescent, Adult, Boston, Brain Neoplasms, Child, Child, Preschool, Disease Progression, Fatigue, Female, Follow-Up Studies, Humans, Irritable Mood, Male, Neoplasms, Pain, Philadelphia, Prospective Studies, Quality of Life, Questionnaires, Risk Factors, Self Report, Sex Factors, Sleep Stages, Stress, Psychological, Treatment Outcome, Washington
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.

DOI10.1200/JCO.2014.59.1222
Alternate JournalJ. Clin. Oncol.
PubMed ID25918277
PubMed Central IDPMC4451175
Grant List1K07 CA096746-01 / CA / NCI NIH HHS / United States
L40 CA170049 / CA / NCI NIH HHS / United States