This review was carried out in accordance with Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. This literature search was registered on the PROSPERO database CRD42019122933 (29).
The Decision Aid Library Inventory (DALI) database (30) was searched for any available decision aids for pelvic exenteration. A search of the grey literature was also performed using Google Search™ engine. Separate searches were undertaken between the 8th January 2019 and 16th January 2019 using the following terms: 1) information about pelvic exenteration; 2) patient decision aid for pelvic exenteration; 3) treatment for advanced rectal cancer; 4) treatment for recurrent rectal cancer 5) information leaflet pelvic exenteration; 6) consent for pelvic exenteration; 7) decision making in pelvic exenteration.
The search results were limited to the first two pages, based on the assumption that internet users rarely go beyond the first page of search results (24). The articles were screened according to the eligibility criteria and all duplicates removed.
The eligibility criteria included sources that discussed surgical management of PE in LARC and LRRC that were aimed towards patients and written in English. Academic sources targeted for healthcare professionals, advertisements sponsored by Google and articles not written in the English language were excluded. Websites were viewed, screened for relevance and studies that did not meet the inclusion criteria were excluded. Sources assessed as potentially relevant were analysed further.
Sources were screened for appropriateness and checked for eligibility according to the defined inclusion criteria by two researchers (AW) and (AC). Any conflict between the two researchers were resolved by a third party, (DH). Data were extracted using a predefined extraction spreadsheet on Excel® version 16.16.16. Data were extracted on the following domains: 1) Website Descriptor: descriptors URL, upload source, country of origin, format of website, and purpose of website; 2) Health condition: classification of disease (LRRC, LARC); 3) Decision-making: Description of surgical options, description of oncological treatments, comparison of surgery versus no surgery, benefits and risks of surgery, and a description of the preoperative and recovery periods, length of recovery, prognosis, quality of life (QoL), pain and complications.
To determine whether the identified patient information sources qualified as a PDA they were assessed according to the criteria published by International Patient Decision Aid (IPDAS) Collaboration (31). This tool assesses the quality of PDAs in terms of their development process and shared decision-making design components (32). The IPDAS assessment of PDAs is reported in three categories: Qualifying (6 items), Certifying (10 items) and Quality (28 items). Only Qualifying and Certifying domains are mandatory to define a decision aid therefore sources were judged solely on these domains. The Qualifying criteria are required in order for an intervention to be considered a decision aid whilst the Certifying criteria ensure the decision aid has no harmful bias. Items 7–10 in the Certifying criteria were not applicable to this study due to its relevance for screening tests and therefore were excluded from analysis.
The quality of the written health information was assessed using the validated DISCERN tool (33). DISCERN has been designed to help users of consumer health information determine the quality of written information about treatment choices (34, 35). The tool is formed from 16 questions; the first 8 questions assess the reliability of the publication and the latter 8, assess the quality of information on treatment choice. Each question rated the information on a 5-point scale ranging from No to Yes. The rating scale has been designed to help decide whether the quality criterion in question is present or has been 'fulfilled' by the publication. The global score indicates the assessor’s overall conclusion of the quality of the source in providing written health information and can only be scored a 1, 3, or 5.
Readability was assessed using the Flesch-Kincaid reading ease score using an online tool (36, 37). Readability is scored 0-100 and corresponds inversely with school years. The challenge in using the Flesch-Kincaid Reading Ease is that test results are not immediately meaningful and a conversion table is needed to make sense of the score (37). These difficulties were rectified by implementing the Flesch-Kincaid Grade Level which calculates a score that is proportional to school years i.e. grade 1, UK school year 2 age 6–7, grade 2, UK school year 3 age 7–8. The results of the two tests correlate approximately inversely: a text with a comparatively high score on the Reading Ease test should have a lower score on the Grade-Level test.