Published online Aug 14, 2019. doi: 10.3748/wjg.v25.i30.4246
Peer-review started: March 19, 2019
First decision: April 30, 2019
Revised: June 9, 2019
Accepted: June 22, 2019
Article in press: June 23, 2019
Published online: August 14, 2019
Inflammatory bowel diseases (IBD) are heterogenous, lifelong diseases, with an unpredictable and potentially progressive course. Being an IBD patient means, in most cases, chronic use of medications, some with significant adverse effects, and, not infrequently, need for repeated surgeries. As affected patients are mostly young in their second or third decade of life, IBD imposes negative psychosocial impact on many aspects of their lives. Research on other chronic illnesses suggests that patients who are well informed about their disease probably have improved adherence and outcomes. Research among IBD patients showed that a majority of them received insufficient information regarding their disease. Patients usually rely on the internet or their gastroenterologist to receive information regarding their disease. The fact that IBD is a complex, heterogenous disease that encompasses a wide range of information topics, probably makes a one-size fits all computerized knowledge resource overwhelming and cumbersome, and make relevant and adequate patient education in the everyday visit in the gastroenterology clinic impractical and ineffective. Yet, in previous research, no attempt was made to explore personalized patient needs. We hypothesized that different patient profiles may have different information needs, and as such may allow building versatile, personalized computer-based information resources in the future.
The main topics that drove our interest in performing this research were: evaluating the self-knowledge among a large group of real-life patients, defining unmet needs in current practice, and, most importantly, exploring whether information needs differ in relation to patients’ clinical and demographic characteristics. The central problem to be solved is how to communicate personalized information to specific patients in a practical and effective way. The findings of our research are to serve as a platform for large scale future research and for applying the gained knowledge in the process of building new platforms for patient educations.
We aimed at and were actually able to evaluate the scope of patient self-knowledge in a large nationwide survey of IBD patients, to identify gaps of knowledge and define unmet needs, and explore whether different patient profiles correlate with different information needs. Our findings will serve future comparable research in other countries, and assist in planning newer platforms for patient education and assess their impact on compliance and outcomes.
We performed a nationwide survey of 571 IBD patients (both ulcerative colitis and Crohn’s disease) utilizing a 28 items questionnaire to measure the adequacy of patients' knowledge and define unmet needs. The novelty of our research lies in two major methodological areas. Following the analysis of the participants' responses we utilized the technique of factor analysis in order to cluster the responses into a few, strongly representative clusters or “knowledge domains”, that were used in further analysis of the data. Another innovation was the utilization of a predefined set of real-world patient profiles for analyses of the data, replacing the conventional statistical methods of uni- and multivariate analyses. By doing so we looked for significant associations between specific patient profiles and unique information needs, both in terms of domains and in terms of specific items.
In the initial analyses we found a universal deficit in patient self-knowledge, spanning most of the items in the questionnaire. Participants gave low ratings for the amount of information received at disease onset (averaging 0.9/5). As for the importance of the same information items, participants gave high ratings, both as perceived for the newly diagnosed patient (mean 4.2/5) and for the participants themselves at current time (mean 3.5/5). These findings emphasize the need to delineate associations between patient- profiles and knowledge-needs, in a way that can prioritize the supply of knowledge according to a patient's values and needs. Factor analysis grouped participants’ responses into six information-domains. The responses of selected patients’ profiles, compared with the rest of the participants, yielded significant, clinically relevant, associations. Patients with active disease showed a higher interest in the domains 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. Larger, populations-based studies, incorporating a wide range of IBD patient are needed to further delineate the links between patient characteristics and information needs, in a way that computerized algorithms can, in a stepwise process, navigate the patient through all knowledge domains that may be relevant to him.
Our major findings are that IBD patients are mostly lacking self-knowledge regarding their disease and that patients differ in their information needs. We made a clear demonstration of the link between patient “profiles” (encompassing demographic, clinical and psychosocial variables) and their information needs. Not all patients need the same information in a given disease state and a given time in their life. Similar to drug therapy in the era of personalized medicine, education and information delivery should not be generic to the whole range of patient population. Rather, it should be personalized as much as possible, hoping to increase relevance and effectiveness. Personalized education resources may improve patient compliance and outcomes. The centrality of IBD in gastroenterological practice worldwide necessitates efforts to improve the education of our patients so they can feel in control, and engage in shared decision making that may in turn improve their compliance and outcomes. Our study paves the way to building a patient tailored information resource.
Patients with chronic, complex disease may lack adequate knowledge regarding their disease state, and as such it may be not surprising that many of them do not comply with therapy and experience negative psychosocial impact on their daily lives. Physicians may not be aware of the importance of patient education, and the everyday clinical encounter in the clinic is far from being a suitable platform for relaying adequate information to our patients. In addition, different patients are probably interested in different information topics at different disease states and time, so our digital platforms should be updated to handle such heterogeneity. Large scale cross sectional surveys can serve to fine-tune the process of patient education while prospective cohorts can examine the impact of such education programs on disease control, patient well being and long term outcomes.