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 information-domains. 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.
Despite the shift toward a biopsychosocial paradigm of medicine, many physicians and mental health professionals (MHPs) find it difficult to treat patients with psycho-somatic disorders. This situation is particularly troublesome due to the high prevalence of these conditions. Although progress has been made over the last few decades in understanding mechanisms underlying the mind-body relationship, disparities remain between research and its clinical implementation. One possible reason for this is the lack of a comprehensive, agreed-upon model that incorporates a biopsychosocial framework and is rooted in an understanding of the various psychobiological pathways. Such a model would enable better communication between physicians and MHPs, allowing them to provide coordinated, stratified treatment. In this paper, four archetypal case studies, together with standard care options are presented to illustrate the current state of affairs. A four-tiered conceptual model of mind-body interrelationships based on pathophysiological and psychopathological mechanisms is suggested to help optimize the treatment of somatic complaints. This Four-Cluster model consists of: (1) Organic Conditions: Structural, or degenerative processes that can affect mood and psychological responses but are not clearly exacerbated by stress. (2) Stress Exacerbated Diseases: Biological disorders with a distinct pathophysiology, such as inflammatory or autoimmune diseases, whose progression is clearly exacerbated by stress. (3) Functional Somatic Syndromes : Conditions wherein heightened sensitivity to stimuli together with hyper-reactivity of the autonomic system form a “vicious cycle” of mutually enhancing learning processes. These processes involve biological mechanisms, such as central sensitization and psychological mechanisms such as catastrophization and selective attention. (4) Conversion Disorder: Physical manifestations of psychological distress, expressed somatically. Symptoms are solely an expression of problems in patients' psychic functioning and are not caused by biological pathology. Finally, suggested management of the aforementioned case studies is presented through the lens of the Four-Cluster model and a proposed integration of our model with existing theories is discussed. As it is rooted in an understanding of psychobiological pathways of illness, the proposed model enables a new way to discern which form of mind-body interaction is manifesting in different diseases and proposes a way to coordinate treatment plans accordingly, to enhance the accuracy and efficacy of care.
Background and Aims. To date, there are no validated measures in IBD to assess the level of preparedness for transition into adult health care. The purpose of this study was to develop and assess the reliability and validity of a “Transition Readiness” (TR) measure for adolescents with IBD, as well as to evaluate the level of TR synchronicity between adolescents themselves, their parents, and their pediatric gastroenterologists. Methods. A self-assessment tool was created to evaluate TR. Items were reviewed for face validation by IBD experts, and an exploratory factor analysis was performed which yielded 3 distinct domains. The study cohort included adolescents aged 12-21 yrs, their parents, and their physicians in pediatric IBD centers. Correlations between patient/parent/physician TR between each of the domains and the overall TR score to age were assessed. Results. 63 subjects (average age 16.6 yrs/79% Crohn’s disease/44% male) participated in this study. There was a significant correlation between the scoring of adolescents and parents on all three domains. The correlation between adolescents and physicians, as well as between parents and physicians, was only consistent for self-efficacy. Self-efficacy significantly correlated with age, while the correlations between perceived knowledge and perception of medical care with age were not significant. Conclusion. Validation of a novel TR measurement for adolescents with IBD demonstrated a good correlation between patients and parents. Out of the three proposed constructs, perceived self-efficacy is the most salient measure.
Background Frequent Attenders with Medically Unexplained Symptoms (FA/MUS) are common in primary care, though challenging to identify and treat. Objectives This study sought to compare FA/MUS to FA with organic illnesses (FA/OI) and the general clinic population (Non-FA) to understand their demographic characteristics and healthcare utilisation patterns. Methods For this retrospective, observational study, Electronic Medical Records (EMR) were obtained from Clalit Health Services, regarding the population of a sizeable primary care clinic in Be’er-Sheva, Israel. Electronic medical records were screened to identify the top 5% of FA. FA were stratified based on whether they had OI. FA without OI were then corroborated as having MUS by their physicians. Demographics, healthcare utilisation and costs were analysed for FA/OI, FA/MUS and Non-FA. Results Out of 594 FA, 305 (53.6%) were FA/OI and 264 (46.4%) were FA/MUS. FA/OI were older (69.1 vs. 56.4 years, p <.001) and costlier (ILS27693 vs. ILS9075, p <.001) than FA/MUS. Average costs for FA/MUS were over four times higher than Non-FA (ILS9075 vs. ILS2035, p <.001). The largest disparities between FA/OI and FA/MUS were in hospitalisations (ILS6998 vs. ILS2033) and surgical procedures (ILS8143 vs. ILS3175). Regarding laboratory tests, differences were smaller between groups of FA but significantly different between FA and Non-FA. Conclusion FA/MUS are more costly than Non-FA and exhibit unique healthcare utilisation and costs patterns. FA/OI had more severe illnesses necessitating hospitalisations and surgical interventions, while FA/MUS had more investigations and tests, attempting to find an explanation for their symptoms.
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