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A North American perspective of content and quality of websites in the English language on childhood-onset lupus erythematosus

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Cutler C1, Peng T2, Stinson J3, Tucker L4, Boneparth A1, Klein Gitelman M5, Moorthy LN1. Lupus. 2017 Jan 1:961203317746246. doi: 10.1177/0961203317746246. [Epub ahead of print]

Abstract

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1 1 Department of Pediatrics, 43982 Rutgers Robert Wood Johnson Medical School, New Brunswick , NJ, USA.

2 2 Department of Pediatrics, Division of Allergy and Immunology, 12222 UCLA David Geffen School of Medicine , Los Angeles, CA, USA.

3 3 Child Health Evaluative Science, The Hospital for Sick Children, Peter Gilgan Centre for Research and Learning; Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, ON, Canada.

4 4 Division of Rheumatology, BC Children's Hospital, Vancouver, BC, Canada.

5 5 Division of Rheumatology, Ann & Robert H. Lurie Children's Hospital of Chicago; Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.

Abstract

Objective The objective of this article is to examine the quality, content, and readability of information and resources in the English language and accessible on the internet by pediatric patients with systemic lupus erythematosus (SLE) and their families in North America. Methods Keywords relevant to SLE were generated by an undergraduate student, a first-year medical student, and a third-year pediatric resident, and a search was conducted across five commonly used search engines. Quality of information found was evaluated independently by an undergraduate student, a graduate student, a first-year medical student, and a third-year pediatric resident using the DISCERN tool. Two pediatric rheumatologists assessed website accuracy and completeness. Readability of websites was determined using the Flesch-Kincaid grade level and Reading Ease score. Results Out of 2000 websites generated in the search, only 34 unique websites met inclusion criteria. Only 16 of these websites had DISCERN scores above 50% (fair quality). Overall quality of website information was fair with mean ±standard deviation (SD) DISCERN quality score of 44 ± 7 (range: 30-56). Only nine websites of 34 had DISCERN scores above 50 (>66%, indicating greater quality) and were further assessed for completeness. Flesch-Kincaid grade level was 11 ± 1 (mean±SD) and reading ease score was 39 ± 10 (mean±SD, range of 11-61). Conclusion Our study highlights the need for more complete, readable information regarding the unique needs of pediatric patients with childhood-onset SLE and their families.