Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST Study

Wolfe, Joanne, Orellana, Liliana, Ullrich, Christina, Cook, E. Francis, Kang, Tammy I., Rosenberg, Abby, Geyer, Russ, Feudtner, Chris and Dussel, Veronica 2015, Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST Study, Journal of clinical oncology, vol. 33, no. 17, pp. 1928-1935, doi: 10.1200/JCO.2014.59.1222.

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Title Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST Study
Author(s) Wolfe, Joanne
Orellana, LilianaORCID iD for Orellana, Liliana
Ullrich, Christina
Cook, E. Francis
Kang, Tammy I.
Rosenberg, Abby
Geyer, Russ
Feudtner, Chris
Dussel, Veronica
Journal name Journal of clinical oncology
Volume number 33
Issue number 17
Start page 1928
End page 1935
Total pages 11
Publisher American Society of Clinical Oncology
Place of publication Baltimore, Md.
Publication date 2015-06
ISSN 1527-7755
Keyword(s) Science & Technology
Life Sciences & Biomedicine
Summary 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.
Language eng
DOI 10.1200/JCO.2014.59.1222
Field of Research 111403 Paediatrics
111299 Oncology and Carcinogenesis not elsewhere classified
1112 Oncology And Carcinogenesis
Socio Economic Objective 920211 Palliative Care
HERDC Research category C1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2015, American Society of Clinical Oncology
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