Background: Decision making in surgery for patients with perianal Crohn's fistula (pCD) is complex. There is often more than one treatment choice, which may be modified by patient treatment preferences. Patients are increasingly using the internet to find out more information about different surgical options. The purpose of this study was to assess the online information and patient decision aids relating to surgery for pCD.
Methods: A systematic review of patient decision aids was carried out in accordance with PRISMA guidance and registered with the PROSPERO database (CRD42016046689). The Google search engine and the Decision Aids Library Inventory (DALI) were searched using a predefined search strategy. Sources that were patient focussed and provided information about pCD surgery were included in the analysis. Academic literature, and sources not in English were excluded. Source descriptors including URL, title and purpose, country of origin and upload source were noted. The quality of source content to aid patient decision making was assessed using the International Patient Decision Aids Standards (IPDAS) and DISCERN criteria. The IPDAS and DISCERN scores reflect the usefulness of a source in aiding patient decision making; the higher the score, the better. The readability of the source content was assessed using the Flesch-Kincaid score.
Results: The initial search yielded 210 sources. We excluded 125 sources at screening and a further 56 at full-text review, leaving 20 sources for analysis. The majority of sources originated from the UK (n=11), the remainder being from the USA (n=8) and Canada (n=1). The most common upload source was hospital/speciality association (n=7). The mean IPDAS and DISCERN score was 6.4±1.957 out of 12 (range=3–10) and 2.9±0.718 out of 5 (range=2–4) respectively. The mean reading ease was 46.5±1.566 (U.S. college standard). Nine sources mentioned more than three surgical options to treat pCD. Perianal Crohn's disease was the main focus of seven sources, with the remainder encompassing both pCD and cryptoglandular fistula disease.
Conclusions: The online sources providing information for surgery in pCD are few and their quality poor, as reflected in a low IPDAS and DISCERN score. This is due to a lack of key information and a high readability score, making the sources unhelpful and difficult to understand for patients when making a treatment choice. Health care professionals should recognise that online information for surgical management in pCD may be misleading. There is a responsibility of individual professionals and their societies to produce a patient friendly decision aid to assist patients when making their surgical treatment choices for pCD.