Neuropsychological surveillance model for survivors of pediatric cancer: A descriptive report of methodology and feasibility

Abstract

Objective: Neuropsychological late effects of pediatric cancer may not become apparent for years after therapy; therefore, serial monitoring is necessary for detecting changes to ensure timely intervention. Unfortunately, lack of access to neuropsychologists, increased patient volume, insurance authorization and reimbursement issues, time required for neuropsychological evaluation, and practice effects related to repeat testing present many challenges to provision of neuropsychological care for survivors of childhood cancer. Models involving surveillance and monitoring have been proposed, though minimal data exist related to the implementation and feasibility of such models. Method: In this descriptive feasibility study, the Neuropsychology Consult Clinic (NCC) at Children’s Hospital Los Angeles is presented, outlining a methodology and algorithm for neuropsychological surveillance of survivors of non-CNS pediatric cancer and an account of the first three years of clinic implementation. Participants included 215 survivors (x̅ age = 5.6 years), including 75.3% Latinx patients. Results: The overall clinic implementation was found to be feasible, with approximately 75% of patients “passing” the screening and 25% “failing” the screening. Clinical judgment only conflicted with the algorithm 8.6% of the time. However, several limitations to feasibility were noted, including validity concerns and ability/time to complete parent-reported outcomes using Spanish forms, as well as access to bilingual examiners. Conclusions: These preliminary data support the feasibility of the NCC model with limitations as outlined above. This is the first phase in a multiphase plan to develop an appropriate screening clinic for survivors of pediatric cancer, with the next phase focusing on sensitivity/specificity of measures.

Keywords:

• Childhood cancer
• pediatric oncology
• neuropsychological surveillance
• neuropsychological monitoring
• cognitive late effects

Acknowledgments

We thank Heather Conklin, PhD, Chief, Section of Neuropsychology at St. Jude Children’s Research Hospital and Karin Walsh, PsyD, Neuropsychologist, Division of Pediatric Neuropsychology at Children’s National Hospital for their expertise and assistance while designing our Neuropsychology Consult Clinic. We additionally thank Dr. Conklin for her editorial contributions.

Disclosure statement

No potential conflict of interest was reported by the authors.