Inflammatory bowel disease patient profiles are related to specific information needs: A nationwide survey

BACKGROUND Inflammatory bowel diseases(IBD) is a heterogenous, lifelong disease, with an unpredictable and potentially progressive course, that may impose negative psychosocial impact on patients.While informed patients with chronic illness have improved adherence and outcomes, previous research showed that the majority of IBD patients receive insufficient information regarding their disease.The large heterogeneity of IBD and the wide range of information topics makes a one-size fits all knowledge resource overwhelming and cumbersome.We hypothesized that different patient profiles may have different and specific information needs, the identification of which will allow building personalized computer-based information resources in the future.AIM To evaluate the scope of disease-related knowledge among IBD patients and determine whether different patient profiles drive unique information needs.METHODS We conducted a nationwide survey addressing hospital-based IBD clinics.A Total of 571 patients completed a 28-item questionnaire, rating the amount of information received at time of diagnosis and the importance of information, as perceived by participants, for a newly diagnosed patient, and for the participants themselves, at current time.We performed an exploratory factor analysis of the crude responses aiming to create a number of representative knowledge domains(factors), and analyzed the responses of a set of 15 real-life patient profiles generated by the study team.RESULTS Participants gave low ratings for the amount of information received at disease onset(averaging 0.9/5) and high ratings for importance, both for the newly diagnosed patients(mean 4.2/5) and for the participants themselves at current time(mean 3.5/5).Factor analysis grouped responses into six informationdomains.The responses of selected profiles, compared with the rest of the participants, yielded significant associations(defined as a difference in rating of >0.5 points with a P < 0.05).Patients with active disease showed a higher interest in work-disability, stress-coping, and therapy-complications.Patients newly diagnosed at age > 50, and patients with long-standing disease(> 10 years)showed less interest in work-disability.Patients in remission with mesalamine or no therapy showed less interest in all domains except for nutrition and long-term complications.CONCLUSION We demonstrate unmet patient information needs.Analysis of various patient profiles revealed associations with specific information topics, paving the way for building patient-tailored information resources.

Information seeking and anxiety among colonoscopy-na?ve adults: direct-to-colonoscopy vs traditional consult-first pathways

AIM To investigate the effects of direct to colonoscopy pathways on information seeking behaviors and anxiety among colonoscopy-na?ve patients.METHODS Colonoscopy-na?ve patients at two tertiary care hospitals completed a survey immediately prior to their scheduled outpatient procedure and before receiving sedation.Survey items included clinical pathway(direct or consult),procedure indication(cancer screening or symptom investigation),telephone and written contact from the physician endoscopist office,information sources,and pre-procedure anxiety.Participants reported pre-procedure anxiety using a 10 point scale anchored by "very relaxed"(1) and "very nervous"(10).At least three months following the procedure,patient medical records were reviewed to determine sedative dose,procedure indications and any adverse events.The primary comparison was between the direct and consult pathways.Given the very different implications,a secondary analysis considering the patient-reported indication for the procedure(symptoms or screening).Effects of pathway(direct vs consult) were compared both within and between the screening and symptom subgroups.RESULTS Of 409 patients who completed the survey,34% followed a direct pathway.Indications for colonoscopy were similar in each group.The majority of the participants were women(58%),married(61%),and internet users(81%).The most important information source was family physicians(Direct) and specialist physicians(Consult).Use of other information sources,including the internet(20% vs 18%) and Direct family and friends(64% vs 53%),was similar in the Direct and Consult groups,respectively.Only 31% of the 81% who were internet users accessed internet health information.Most sought fundamental information such as what a colonoscopy is or why it is done.Pre-procedure anxiety did not differ between care pathways.Those undergoing colonoscopy for symptoms reported greater anxiety [mean 5.3,95%CI: 5.0-5.7(10 point Likert scale)] than those for screening colonoscopy(4.3,95%CI: 3.9-4.7).CONCLUSION Procedure indication(cancer screening or symptom investigation) was more closely associated with information seeking behaviors and pre-procedure anxiety than care pathway.