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
Date Published06/2015
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

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.

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