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Feasibility of Conducting Long-Term Follow-Up of Children and Infants Treated for CNS Tumors on the Same Cooperative Group Clinical Trial Protocol |
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| Authors: | Jennifer Hoag Mary Jo Kupst Marie-Eve Briere Donald Mabbott T David Elkin Christine L Trask Jill Isenberg Suzanne Holm Cheryl Ambler Douglas R Strother |
| Institution: | 1. Department of Pediatrics, Hematology/Oncology/Bone Marrow Transplant, Medical College of Wisconsin, 8701 Watertown Plank Road, MFRC 3018, Milwaukee, WI, 53226, USA 2. Departments of Oncology and Pediatrics, University of Calgary, Calgary, AB, Canada 3. Program in Neuroscience and Mental Health, Research Institute, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada 4. Department of Psychology, University of Toronto, Toronto, ON, Canada 5. Department of Psychiatry, University of Mississippi Medical Center, Jackson, MS, USA 6. Department of Psychiatry, Rhode Island Hospital, The Warren Alpert Medical School of Brown University, Providence, RI, USA 7. Department of Psychiatry and Human Behavior, The Warren Alpert Medical School of Brown University, Providence, RI, USA 8. Department of Psychology, St. Louis Children’s Hospital, Washington University in St. Louis School of Medicine, Saint Louis, MO, USA 9. Department of Neurology, Washington University in St. Louis School of Medicine, Saint Louis, MO, USA 10. Psychology Service, Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA 11. Division of Child Neurology, Stanford University, Stanford, CA, USA |
| Abstract: | Given the barriers to conducting long-term assessment of neurocognitive and psychosocial functioning of those treated in infancy for central nervous system (CNS) tumors, a multi-site feasibility study was conducted. The primary objective was to demonstrate that it is feasible to identify, locate and assess the functioning of children treated on the same protocol 10-years post-treatment. Six sites obtained institutional approval, identified and recruited subjects, and obtained comprehensive neurocognitive and psychosocial data. All feasibility objectives were met. Barriers to participation included length of time for Institutional Review Board submission and review, clinical demands, limited eligible participants at individual institutions, difficulty locating long-term subjects and stipend/reimbursement concerns. Results indicate that long-term studies are feasible and essential given the need to address long-term issues of children treated at a young age for CNS tumors, especially as they relate to later academic and vocational planning, but require significant coordination and commitment of cooperative group and institutional resources. |
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