Systematic Review of Health Literacy in Childhood Cancer Patients, Survivors, and Their Caregivers

Abstract

Objective: This systematic review examined the literature regarding health literacy among pediatric cancer patients, survivors, and their caregivers. Specific aims were to identify and summarize measures used, levels of and demographic correlates of health literacy, effects of health literacy interventions, and associations between health literacy and health outcomes.

Methods: The search strategy was executed in the following databases: PubMed, EMBASE, PsycINFO, CINAHL, ERIC, and the Cochrane Library. Of the 842 unique studies retrieved, 9 met the inclusion criteria and were included in the systematic review.

Results: Studies used a variety of validated and study-specific measures with no measure emerging as the standard. Levels of health literacy were typically assessed subjectively and across studies the majority of those sampled self-reported adequate health literacy. Few studies examined demographic correlates of health literacy, precluding the identification of consistent predictors. Health literacy intervention research for this population is in its infancy and only pilot projects were identified; effects could not be evaluated. No studies assessed the impact of health literacy on health outcomes.

Conclusions: Very few studies assessed health literacy in pediatric oncology. As treatment for childhood cancer becomes increasingly complex, and patients and caregivers are expected to have adequate understanding of health information, health literacy is a critical construct that should not be overlooked.

Keywords: health literacy; pediatric oncology.