Jennifer W Mack1,2,3, Angel M Cronin2, Hajime Uno2, Suzanne Shusterman1,3, Clare J Twist4, Rochelle Bagatell5, Abby Rosenberg6,7, Araz Marachelian8, M Meaghan Granger9, Julia Glade Bender10, Justin N Baker11, Julie Park6,7, Susan L Cohn12, Alyssa Levine13, Sarah Taddei14, Lisa R Diller1,3. 1. Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts. 2. Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts. 3. Division of Pediatric Hematology/Oncology, Boston Children's Hospital, Boston, Massachusetts. 4. Pediatric Experimental Therapeutics, Department of Pediatric Oncology, Roswell Park Cancer Institute, Buffalo, New York. 5. Division of Oncology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania. 6. Department of Pediatric Hematology/Oncology, Seattle Children's Research Institute, Seattle, Washington. 7. Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington. 8. Children's Center for Cancer and Blood Diseases, Children's Hospital Los Angeles, Los Angeles, California. 9. Hematology and Oncology Center, Cook Children's Medical Center, Fort Worth, Texas. 10. Department of Pediatric Oncology, Memorial Sloan Kettering Cancer Center, New York, New York. 11. Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, Tennessee. 12. Department of Pediatrics, Comer Children's Hospital, University of Chicago, Chicago, Illinois. 13. Emory University School of Medicine, Atlanta, Georgia. 14. Department of Social Work, Massachusetts General Hospital, Boston, Massachusetts.
Abstract
BACKGROUND: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor-prognosis childhood cancer. METHODS: The authors conducted a prospective cohort study at 9 pediatric cancer centers that enrolled 95 parents of children with recurrent or refractory, high-risk neuroblastoma (63% of those who were approached), a condition for which cure rarely is achieved. Parents were surveyed regarding the child's likelihood of cure; their primary goal of care; the child's symptoms, suffering, and quality of life; and regret concerning the last treatment decision. Medical records identified care and treatment decisions. RESULTS: Only 26% of parents recognized that the chance of cure was <25%. When asked to choose a single most important goal of care, approximately 72% chose cure, 10% chose longer life, and 18% chose quality of life. Parents were more likely to prioritize quality of life when they recognized the child's poor prognosis (P = .002). Approximately 41% of parents expressed regret about the most recent treatment decision. Parents were more likely to experience regret if the child had received higher intensity medical care (odds ratio [OR], 3.14; 95% CI, 1.31-7.51), experienced suffering with limited benefit from the most recent treatment (OR, 4.78; 95% CI, 1.16-19.72), or experienced suffering from symptoms (OR, 2.91; 95% CI, 1.18-7.16). CONCLUSIONS: Parents of children with poor-prognosis cancer frequently make decisions based on unrealistic expectations. New strategies for effective prognosis communication are needed.
BACKGROUND: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor-prognosis childhood cancer. METHODS: The authors conducted a prospective cohort study at 9 pediatric cancer centers that enrolled 95 parents of children with recurrent or refractory, high-risk neuroblastoma (63% of those who were approached), a condition for which cure rarely is achieved. Parents were surveyed regarding the child's likelihood of cure; their primary goal of care; the child's symptoms, suffering, and quality of life; and regret concerning the last treatment decision. Medical records identified care and treatment decisions. RESULTS: Only 26% of parents recognized that the chance of cure was <25%. When asked to choose a single most important goal of care, approximately 72% chose cure, 10% chose longer life, and 18% chose quality of life. Parents were more likely to prioritize quality of life when they recognized the child's poor prognosis (P = .002). Approximately 41% of parents expressed regret about the most recent treatment decision. Parents were more likely to experience regret if the child had received higher intensity medical care (odds ratio [OR], 3.14; 95% CI, 1.31-7.51), experienced suffering with limited benefit from the most recent treatment (OR, 4.78; 95% CI, 1.16-19.72), or experienced suffering from symptoms (OR, 2.91; 95% CI, 1.18-7.16). CONCLUSIONS: Parents of children with poor-prognosis cancer frequently make decisions based on unrealistic expectations. New strategies for effective prognosis communication are needed.
Authors: Jennifer W Mack; Hajime Uno; Clare J Twist; Rochelle Bagatell; Abby R Rosenberg; Araz Marachelian; M Meaghan Granger; Julia Glade Bender; Justin N Baker; Julie R Park; Susan L Cohn; Jorge H Fernandez; Lisa R Diller; Suzanne Shusterman Journal: J Pain Symptom Manage Date: 2020-04-30 Impact factor: 3.612
Authors: Wendy G Lichtenthal; Kailey E Roberts; Corinne Catarozoli; Elizabeth Schofield; Jason M Holland; Justin J Fogarty; Taylor C Coats; Lamia P Barakat; Justin N Baker; Tara M Brinkman; Robert A Neimeyer; Holly G Prigerson; Talia Zaider; William Breitbart; Lori Wiener Journal: Palliat Med Date: 2020-02-05 Impact factor: 4.762
Authors: Bryan A Sisk; Kieandra Harvey; Annie B Friedrich; Alison L Antes; Lauren H Yaeger; Jennifer W Mack; James M DuBois Journal: Pediatr Blood Cancer Date: 2021-10-18 Impact factor: 3.167
Authors: Bryan A Sisk; Megan Keenan; Melody S Goodman; Argentina E Servin; Lauren H Yaeger; Jennifer W Mack; James M DuBois Journal: Patient Educ Couns Date: 2021-12-30
Authors: Bryan A Sisk; Megan A Keenan; Lindsay J Blazin; Erica Kaye; Justin N Baker; Jennifer W Mack; James M DuBois Journal: Pediatr Blood Cancer Date: 2021-04-16 Impact factor: 3.838
Authors: Bryan A Sisk; Annie B Friedrich; Erica C Kaye; Justin N Baker; Jennifer W Mack; James M DuBois Journal: Cancer Date: 2021-02-17 Impact factor: 6.921