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


CONCLUSIONS
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.
Joanne Wolfe, Christine Ullrich, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe, Christine Ullrich, Boston Children's Hospital and Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, Deakin University, Victoria, Australia; Tammy I. Kang, Chris Feudtner, The Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Abby Rosenberg and Russ Geyer Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA; and Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina. joanne_wolfe@dfci.harvard.edu.
Joanne
J
Wolfe
Joanne Wolfe, Christine Ullrich, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe, Christine Ullrich, Boston Children's Hospital and Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, Deakin University, Victoria, Australia; Tammy I. Kang, Chris Feudtner, The Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Abby Rosenberg and Russ Geyer Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA; and Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
Liliana
L
Orellana
Joanne Wolfe, Christine Ullrich, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe, Christine Ullrich, Boston Children's Hospital and Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, Deakin University, Victoria, Australia; Tammy I. Kang, Chris Feudtner, The Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Abby Rosenberg and Russ Geyer Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA; and Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
Christina
C
Ullrich
Joanne Wolfe, Christine Ullrich, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe, Christine Ullrich, Boston Children's Hospital and Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, Deakin University, Victoria, Australia; Tammy I. Kang, Chris Feudtner, The Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Abby Rosenberg and Russ Geyer Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA; and Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
E Francis
EF
Cook
Joanne Wolfe, Christine Ullrich, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe, Christine Ullrich, Boston Children's Hospital and Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, Deakin University, Victoria, Australia; Tammy I. Kang, Chris Feudtner, The Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Abby Rosenberg and Russ Geyer Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA; and Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
Tammy I
TI
Kang
Joanne Wolfe, Christine Ullrich, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe, Christine Ullrich, Boston Children's Hospital and Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, Deakin University, Victoria, Australia; Tammy I. Kang, Chris Feudtner, The Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Abby Rosenberg and Russ Geyer Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA; and Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
Abby
A
Rosenberg
Joanne Wolfe, Christine Ullrich, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe, Christine Ullrich, Boston Children's Hospital and Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, Deakin University, Victoria, Australia; Tammy I. Kang, Chris Feudtner, The Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Abby Rosenberg and Russ Geyer Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA; and Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
Russ
R
Geyer
Joanne Wolfe, Christine Ullrich, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe, Christine Ullrich, Boston Children's Hospital and Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, Deakin University, Victoria, Australia; Tammy I. Kang, Chris Feudtner, The Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Abby Rosenberg and Russ Geyer Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA; and Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
Chris
C
Feudtner
Joanne Wolfe, Christine Ullrich, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe, Christine Ullrich, Boston Children's Hospital and Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, Deakin University, Victoria, Australia; Tammy I. Kang, Chris Feudtner, The Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Abby Rosenberg and Russ Geyer Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA; and Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
Veronica
V
Dussel
D000293:Adolescent; D000328:Adult; D001900:Boston; D001932:Brain Neoplasms / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D018450:Disease Progression; D005221:Fatigue / Q000453:epidemiology / Q000209:etiology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007508:Irritable Mood; D008297:Male; D009369:Neoplasms / Q000150:complications / Q000473:pathology / Q000523:psychology*; D010146:Pain / Q000453:epidemiology / Q000209:etiology*; D015143:Philadelphia; D011446:Prospective Studies; D011788:Quality of Life; D012307:Risk Factors; D057566:Self Report; D012737:Sex Factors; D012894:Sleep Stages; D013315:Stress, Psychological / Q000453:epidemiology / Q000209:etiology*; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014861:Washington