Assessing internet-based information used to aid patient decision-making about surgery for perianal Crohn’s fistula

• Published in: Techniques in coloproctology 2017-06, Vol.21 (6), p.461-469
• Main Authors: Marshall, J. H., Baker, D. M., Lee, M. J., Jones, G. L., Lobo, A. J., Brown, S. R.
• Format: Article
• Language: English
• Subjects: Abdominal Surgery; Antiretroviral drugs; Colorectal Surgery; Comprehension; Consumer Health Information - methods; Consumer Health Information - standards; Consumer Health Information - statistics & numerical data; Crohn Disease - complications; Decision Making; Decision Support Techniques; Gastroenterology; Humans; Internet; Medicine; Medicine & Public Health; Proctology; Rectal Fistula - etiology; Rectal Fistula - surgery; Review; Surgery
• ISSN: 1123-6337; 1128-045X
• DOI: 10.1007/s10151-017-1648-2

Background Decision-making in perianal Crohn’s fistula (pCD) is preference sensitive. Patients use the internet to access healthcare information. The aim of this study was to assess the online information and patient decision aids relating to surgery for pCD. Methods A search of Google™ and the Decision Aids Library Inventory (DALI) was performed using a predefined search strategy. Patient-focussed sources providing information about pCD surgery were included in the analysis. Written health information was assessed using the International Patient Decision Aids Standards (IPDAS) and DISCERN criteria. The readability of the source content was assessed using the Flesch–Kincaid score. Results Of the 201 sources found, 187 were excluded, leaving 14 sources for analysis. Three sources were dedicated to pCD, and six sources mentioned pCD-specific outcomes. The most common surgical intervention reported was seton insertion ( n  = 13). The least common surgical intervention reported was proctectomy ( n  = 1). The mean IPDAS and DISCERN scores were 4.43 ± 1.65 out of 12 (range = 2–8) and 2.93 ± 0.73 out of 5 (range = 1–5), respectively. The mean reading ease was US college standard. Conclusions We found no patient decision aids relating to surgery for pCD. The online sources relating to surgery for pCD are few, and their quality is poor, as seen in the low IPDAS and DISCERN scores. Less than half of the sources mentioned pCD-specific outcomes, and three sources were solely dedicated to providing information on pCD. Healthcare professionals should look to create a patient tool to assist decision-making in pCD.