Feasibility of conducting long-term follow-up of children and infants treated for CNS tumors on the same cooperative group clinical trial protocol

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

Research output: Contribution to journalArticle

1 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)136-143
Number of pages8
JournalJournal of Clinical Psychology in Medical Settings
Volume21
Issue number2
DOIs
StatePublished - Jun 2014

Keywords

  • CNS tumors
  • Feasibility
  • Late effects
  • Neurocognitive

ASJC Scopus subject areas

  • Clinical Psychology

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