Readability and Visuals in Medical Research Information Forms for Children and Adolescents

Abstract

Children are often-overlooked receivers of medical information, and little research addresses their information needs. However, young children are capable of understanding medical concepts, and they express the desire to be informed. This study addresses the quality of medical research information forms for children in the Netherlands, by assessing text readability and the role of visuals. Children's reading books, nonfiction books, and textbooks were used as comparison. Seven focus groups were conducted to identify children's preferences and needs for text and supporting visuals. We argue that the use of visuals is a powerful, but neglected, tool to improve medical information for minors.

How Good Is This Page? Benefits and Limits of Prompting on Adolescents’ Evaluation of Web Information Quality

“…Furthermore, adolescents have expectations regarding the readability of documents directed to them. Grootens‐Wiegers, De Vries, Vossen, and Van den Broek () conducted focus groups with 77 adolescents (11‐ and 12‐year‐olds) to discuss their perceptions of a pediatric research information form that had a Flesch reading ease score of 55.43 (i.e., fairly difficult to read). Participants found the form hard to read and expressed the need for a better explanation of the meaning of scientific concepts.…”

Readability of the informed consent forms in Flanders using the Douma index: Analyzing the documents that help patients make decisions

“…These results are in agreement with several pieces of research around the world and along the years that show poorly written clinical information, whether taking into account the readability of the ICF or other defects that decreases the rigor or validity of these documents. [9][10][11][12][13][14][19][20][21][22][23][24] Notwithstanding, the literature found agreement that "the consent form should be written at year 6 level of language ability 6 which is the language ability of an adolescent 25 because the education standard, literacy level, and language competency of patients are also important determinants of patients' ability to comprehend the consenting process". 6 If patients cannot understand the written information, the ICF is not helping patients to make an informed consent decision about their health; their right to be informed is decreased or impaired.…”

User testing digital, multimedia information to inform children, adolescents and their parents about healthcare trials

“…In paediatric trials, children and adolescents deemed competent provide consent; when not, parents or legal guardians consent for the child and, where appropriate, the child assents (Health Research Authority, 2018b). Indeed, research indicates that children prefer to be informed and involved in healthcare decision-making (Baker et al, 2013; Grootens-Wiegers et al, 2015). Therefore, it is crucial that accessible information is provided (Health Research Authority, 2018b; Hunter and Pierscionek, 2007).…”

“…For adults, the US National Institutes of Health recommends materials should be written at an 11–12-year-old reading level (National Institutes of Health, 2013), a recommendation not always met (Ennis and Wykes, 2016; Eltorai et al, 2015; Sheppard et al, 2014; Simonds et al, 2017; Terblanche and Burgess, 2010). PIS for children and adolescents are often simplified but may still be too complex for the intended age group (Ford et al, 2007; Grootens-Wiegers et al, 2015; Grossman et al, 1994). A recent study involving researchers and participants highlighted a need for research into the best approach for delivering trial information (Healy et al, 2018).…”