Information Needs Regarding Cognitive Late Effects of Caregivers of Central Nervous System Tumor Survivors

OTJR (Thorofare N J). 2019 Jul;39(3):159-166. doi: 10.1177/1539449218809943. Epub 2018 Nov 12.


Pediatric central nervous system (CNS) tumor survivors are at risk for experiencing cognitive late effects (CLEs). Caregivers of survivors may be unaware of these changes or receive untimely information regarding CLEs. Conversely, health care providers (HCPs) may face barriers to providing education. This study aims to (a) understand the knowledge and resource gap for caregivers regarding CLEs and (b) explore how HCPs currently provide education. Caregivers and HCPs were both interviewed. Qualitative analysis was performed using emergent coding. Fifteen caregivers and eight HCPs participated. Caregivers generally felt confident in assisting their survivor but experienced "information overload" during initial diagnosis and treatment. HCPs reported difficulties in determining appropriate timing for education and perceived that caregivers typically lack understanding of CLEs. Caregivers should be aware of and understand a survivor's risk for CLEs to help survivors manage changes. With increasing survival rates of pediatric CNS tumor patients, HCPs must be prepared to provide appropriate education and referrals regarding CLEs for long-term care.

Keywords: caregivers; children; cognition; education; neuro-oncology.

MeSH terms

  • Adolescent
  • Adult
  • Cancer Survivors*
  • Caregivers*
  • Central Nervous System Neoplasms / rehabilitation*
  • Child
  • Cross-Sectional Studies
  • Female
  • Humans
  • Male
  • Middle Aged
  • Occupational Therapy
  • Patient Education as Topic*
  • Surveys and Questionnaires
  • Young Adult