Assessment of Online Resources for Returning to School During and After Treatment of Childhood Cancer
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Assessment of Online Resources for Returning to School During and After Treatment of Childhood Cancer Kathy Jeanne Ruble 1 & Elizabeth Juliana Paré-Blagoev 2 & Stacy Lorine Cooper 1 & Lisa Anne Jacobson 1,3
# American Association for Cancer Education 2019
Abstract To evaluate current online parent education resources for children returning to school after a cancer diagnosis. Online search was conducted using 3 search engines and terms recommended by affected families. Sites were evaluated by 3 reviewers for understandability and actionability (scored 0–100%) using the Patient Education Materials Assessment Tool (PEMAT). Readability was assessed using Flesch-Kincaid (grade K-12) and content comprehensiveness by a clinical expert review for 5 late effect domains (scored 0–100%). A total of 56 unique online resources were evaluated. Mean understandability and actionability scores were 54% (range 17–83) and 36% (range 0–83) respectively. The mean Flesch-Kincaid grade level was 10th grade (mode 12th). Comprehensiveness of domain coverage was 34% (mode 20%). Some high-quality materials for this topic are available, but generally low scores on the PEMAT scales and high reading level estimates on Flesch-Kincaid indicate parents may have difficulty understanding and using the information. The low scores for comprehensiveness of information indicate parents will likely need to access multiple sources for complete information. A table provides the names, website (URL), and scoring for the 24 top-rated sites and can be used to make recommendations to parents with improved confidence in quality. Keywords Patient education . Online resources . School reentry . Childhood cancer
Introduction The internet is a growing resource for health information for patients and families, currently accessible to 88% of Americans [1]. For common health conditions, 98% of parents report using the internet for information and 80% report using public search engines to access specific sites [2]. Parents of children with rare health conditions, including cancer, frequently use the internet to clarify and expand on information about their child’s condition and its management [3–5]. Returning to school after the diagnosis of childhood cancer often presents many challenges [6]. Prolonged absences as
* Kathy Jeanne Ruble [email protected] 1
Bloomberg Children’s Center, Johns Hopkins School of Medicine, Johns Hopkins Hospital, 1800 Orleans St., Baltimore, MD 21234, USA
2
School of Education, Johns Hopkins University, 2800 N Charles St., Baltimore, MD, USA
3
Kennedy Krieger Institute, 1750 E Fairmount Ave, Baltimore, MD 21231, USA
well as treatment side effects including neurocognitive changes, fatigue, and psychosocial considerations all impact the transition to a post-diagnosis school environment [7–9]. The pediatric oncology provider is an important source of the information needed to successfully navigate these challenges, yet research has shown that there are many gaps in the information needed by families. Key topics of information families
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