The Quality of Life in Adult Patients With Syndromic Craniosynostosis From Their Perspective.

INTRODUCTION: Clinical intuition may perceive those adults with syndromic craniosynostosis to have a lower quality of life (QOL) compared with the normative population. Classification of facial difference; standardization of cognitive capacity and selection of an appropriate QOL measurement tool provides a less intuitive and more evidence-based method of assessing QOL in this particular group of patients. METHODS: Adults with syndromic craniosynostosis treated by the same surgeons underwent Whittaker Classification for facial difference by an independent observer. Neuropsychology screening ensured cognitive ability in patients for independent answering of a World Health Organization QOL postal questionnaire. Data analysis using descriptive and z test statistics allowed comparison to nonsyndromic adult United Kingdom data provided by the World Health Organization. RESULTS: Forty adult patients met authors' inclusion criteria. Whittaker Classification of facial difference ranged from I (31 patients) to II (8 patients) and III (1 patient). Quality of life showed no correlation to facial difference. Quality of life was better in the physical, psychological, and environmental domains compared with the normative adult UK population. However, no statistical difference was found in the social domain. Female Apert syndrome patients had a worse QOL than males in the social domain. CONCLUSIONS: The counterintuitive findings show that adult syndromic patients with similar cognitive capacity perceive their quality of life as being above that experienced in a normative UK nonsyndromic population with no correlation to the degree of facial difference.

Empowerment of Parents of Children With Craniosynostosis by Objective Scoring of Patient Information Websites.

INTRODUCTION: Parental anxiety may be caused by inappropriate information on the world wide web regarding craniosynostosis. The aim of this study was to study the correlation between the first 100 websites ranked on the Google search engine and those ranked based on objective scoring with patient information scoring tool. The results of these findings can then be used to recommend websites based on the quality of information that may not initially appear first on a search engine. METHODS: The DISCERN patient information scoring tool was chosen as a scientific way of measuring the quality of patient information based on previous research by the Picker Institute in Oxford. The word "craniosynostosis" was entered into the Google internet search engine. Patient information provided by the first 100 websites was studied and scored using the DISCERN scoring tool. From this score, each website was ranked with the highest scoring website at the top and worse scoring website at the bottom. This ranking based on the DISCERN tool score was correlated against the ranking of the website by Google. Positive correlation between DISCERN and Google ranking would be demonstrated if a website high in the ranking using DISCERN was also at the top of the first 100 websites on Google. RESULTS: No correlation could be found between those websites ranked highly for patient information on craniosynostosis using the DISCERN tool to the ranking provided by Google. DISCERN scores ranged from 17 to 72 (the lowest possible DISCERN tool score being 15 and the highest 85). The website ranking highest in terms of quality appeared only 50th in the Google rank. CONCLUSION: High-quality patient information on craniosynostosis does exist on the world wide web but may be difficult to find due to the complexity of factors used to rank websites on internet search engines. This results in some high-quality websites not appearing at the top of an internet search. Therefore, parents risk missing useful information relevant to their child's diagnosis. Healthcare professionals can use objective scoring of patient information websites to empower their patients to seek higher quality information.