The readability of online health resources for phenylketonuria
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ORIGINAL ARTICLE
The readability of online health resources for phenylketonuria Jessie M. Marsh 1 & Thomas D. Dobbs 2
&
Hayley A. Hutchings 1
Received: 8 November 2019 / Accepted: 16 March 2020 # The Author(s) 2020
Abstract Phenylketonuria (PKU) is a condition that results in the build-up of phenylalanine in the blood. This can cause severe brain damage and neurological issues if left untreated. Management can be complex and many individuals may turn to the internet to access further information. It is important that resources are understood as misinterpretation could result in harm to health. The aim of this study was to assess the readability of online resources for PKU and to assess their visual appearance using a communication sciences assessment framework. We searched the top five websites through Google using the search term “phenylketonuria/PKU”. We then analysed the text content of the identified websites using five readability formulae to determine the USA and UK reading grade. The median readability level across the five websites was US grade/UK grade 10.6/11.6, with individual grades ranging from 10/11 to 13.3/14.3. We found wide differences in the focus, layout and general appearance of the websites. The readability of resources was much higher than the recommended US 6th grade level. Online resources for PKU need to be simplified to ensure they can be easily understood. Keywords Online information . Readability . Phenylketonuria . PKU
Introduction Phenylketonuria (PKU) is one of the most common inborn errors of metabolism (Macleod and Ney 2010; Winn et al. 2016), with a mean European prevalence of around 1 in 10,000 newborns, although rates vary across Europe (Blau et al. 2010; van Wegberg et al. 2017). It is caused by an autosomal recessive deficiency in the phenylalanine hydroxylase (PAH) enzyme that is responsible for converting phenylalanine into tyrosine (van Wegberg et al. 2017). Deficiency of PAH leads to a build-up of phenylalanine in the blood and brain which is toxic and can lead to neurotransmitter dysfunction and motor defects (Blau et al. 2010; van Wegberg et al. 2017). Left untreated PKU is associated with progressive intellectual impairment along with a number of additional symptoms including eczematous rash, autism, seizures, motor deficits and microcephaly (Blau et al. 2010; van Wegberg et al.
* Hayley A. Hutchings [email protected] 1
Patient and Population Health and Informatics Research, Swansea University Medical School, Singleton Park, Swansea SA2 8PP, UK
2
Reconstructive Surgery and Regenerative Medicine Research Group, Institute of Life Sciences, Swansea University Medical School, Swansea SA2 8PP, UK
2017). As the child grows further developmental problems, aberrant behaviour and psychiatric symptoms become more apparent (Blau et al. 2010). In adults, PKU can present itself with a short attention span and low mood, confusion and, in extreme cases, seizures (Brown and Lichter-Konecki 2016). If blood phenylalanine levels are controlled, the associated central n
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