Joanne Wolfe1, Liliana Orellana2, Christina Ullrich2, E Francis Cook2, Tammy I Kang2, Abby Rosenberg2, Russ Geyer2, Chris Feudtner2, Veronica Dussel2. 1. 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. 2. 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.
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.
RCT Entities:
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.
Authors: Scott H Maurer; Pamela S Hinds; Sheri L Spunt; Wayne L Furman; Javier R Kane; Justin N Baker Journal: J Clin Oncol Date: 2010-05-24 Impact factor: 44.544
Authors: Tanja Hechler; George A Chalkiadis; Carola Hasan; Joachim Kosfelder; Ulrike Meyerhoff; Silja Vocks; Boris Zernikow Journal: J Pain Date: 2009-04-21 Impact factor: 5.820
Authors: John A Heath; Naomi E Clarke; Susan M Donath; Maria McCarthy; Vicki A Anderson; Joanne Wolfe Journal: Med J Aust Date: 2010-01-18 Impact factor: 7.738
Authors: Meaghann S Weaver; Katherine E Heinze; Katherine P Kelly; Lori Wiener; Robert L Casey; Cynthia J Bell; Joanne Wolfe; Amy M Garee; Anne Watson; Pamela S Hinds Journal: Pediatr Blood Cancer Date: 2015-12 Impact factor: 3.167
Authors: Maya F Ilowite; Hasan Al-Sayegh; Clement Ma; Veronica Dussel; Abby R Rosenberg; Chris Feudtner; Tammy I Kang; Joanne Wolfe; Kira Bona Journal: Cancer Date: 2018-09-14 Impact factor: 6.860
Authors: Michelle A Fortier; Sun Yang; Michael T Phan; Daniel M Tomaszewski; Brooke N Jenkins; Zeev N Kain Journal: Pediatr Blood Cancer Date: 2019-12-18 Impact factor: 3.167
Authors: Erica C Kaye; Courtney A Gushue; Samantha DeMarsh; Jonathan Jerkins; April Sykes; Zhaohua Lu; Jennifer M Snaman; Lindsay Blazin; Liza-Marie Johnson; Deena R Levine; R Ray Morrison; Justin N Baker Journal: Pediatr Blood Cancer Date: 2017-12-08 Impact factor: 3.167
Authors: Erica C Kaye; Samantha DeMarsh; Courtney A Gushue; Jonathan Jerkins; April Sykes; Zhaohua Lu; Jennifer M Snaman; Lindsay J Blazin; Liza-Marie Johnson; Deena R Levine; R Ray Morrison; Justin N Baker Journal: Oncologist Date: 2018-05-04