Introduction Inflammatory bowel diseases (IBD) highly affect quality of life. The course of disease and success of treatment are variable. These factors result in a high number of psychiatric comorbidities with patients requiring extensive medical consultation or additional psychotherapy. Unfortunately, time is often limited in daily clinical care, which leaves patients not feeling sufficiently informed about their disease. Patients often compensate by searching the internet, with possibly harmful information. We aim to identify information gaps to allow a more complete education of patients. Methods We analyzed the internet search behavior using the key words [Morbus Crohn] (CD) and [Colitis ulcerosa] (UC) using Google Trends. In addition, we investigated which websites are the first hits on Google, as those are most likely visited by patients. Results Symptoms, nutrition and therapy are central topics for persons interested in IBD. The searches concerning symptoms or therapies do not match the actual incidence or prevalence of comorbidities as well as the more commonly used therapies or established nutritional recommendations. We found a distinct impact of well-known personalities on disease related searches. The first suggested websites on google showed great heterogeneity of responsible publishers, often with possible conflict of interests. In line with those observations, quality of website content is highly heterogeneous. Conclusion This study showed a need of information concerning symptoms, nutrition and therapy that should be considered during patient education. Since time in physician patient dialogue is short it may be helpful to further evaluate websites independently in order to give recommendations of websites offering reliable information.

Infodemiology of Crohn's disease and Ulcerative colitis using Google Trends - an approach to investigate patient needs.

The development of pharmaceutical dosage forms that are tailored to specific populations according to their preferences and acceptability could improve medication adherence, which could lead to effective pharmacotherapy. This study evaluated the preference for and perceptions of fluid gels as a potential age-appropriate dosage form for older adults with dysphagia. The palatability and swallowability of the developed fluid gels were also assessed to determine the consumer acceptability of this formulation. A cross-sectional survey was conducted through the electronic distribution of a self-administered questionnaire among adults in Malaysia between April and December 2021. A randomized and double-blinded clinical study was conducted to evaluate the palatability and swallowability of the fluid gels in 30 healthy participants. A cross-sectional study involving 673 respondents revealed that the fluid gels were perceived positively by consumers (64.4%), were easily swallowed (50.8%), were safe to be consumed (45.3%), and were suitable as a new pharmaceutical formulation (43.8%). The clinical study shows that moderately thickened fluid gels masked the bitterness of the medication and were easily swallowed. The newly developed fluid gels were also positively perceived by the participants. Taken together, fluid gels have shown great potential as an innovative oral formulation that is suitable for consumption by elderly patients with dysphagia.

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Preference, Perception, and Acceptability of Fluid Gels as a Potential Age-Appropriate Dosage Form for Elderly Patients with Dysphagia

The aim of this study was to investigate patients' preferences regarding the evolving treatment landscape in Crohn's disease (CD) and ulcerative colitis (UC) based on a discrete choice experiment.Eligible patients (aged 18 years or older) had a confirmed diagnosis of CD or UC and were willing and able to participate in telephone interviews. The survey design is based on a prior literature review, a pilot study, and clinical expert discussions. Preferences related to clinical and practical features of advanced therapies, like tumor necrosis factor alpha inhibitors, anti-integrins, anti-interleukins, and Janus kinase inhibitors, were assessed. Patients were asked to choose between two different hypothetical treatment alternatives visualized in up to 11 choice scenarios. Based on these choices, the relative importance of treatment characteristics was derived from regression coefficients estimated by a conditional logit model.Of the 291 patients included, 219 (75%) were eligible for this analysis. Among the evaluated attributes in CD, 1-year remission rate was ranked highest, with 42.3% relevance for the overall decision. The second most important attribute was the frequency of serious adverse events (AE) (25.1%), followed by sustained remission over 2 years (17.8%). Lower importance was assigned to the administration mode (14.6%) and none to the frequency of non-serious AE (0.1%). In UC, preferences were driven by efficacy (25.3% for mucosal healing; 23.4% for corticosteroid-free remission) and the frequency of serious AE (18.3%), followed by the administration mode (18.1%). Also, non-serious AE were classified as relevant factors for decision-making (10.7%), while maintaining remission for at least 2 years showed no significant impact (4.4%).For both indications, efficacy outcomes were rated most important, followed by the frequency of serious AE. Variations were mainly found in the evaluation of non-serious AE and sustained remission. Considering patient preferences may improve the effectiveness of available therapies for moderate to severe CD and UC. 

/pdf/inflammatory-bowel-disease-patients-treatment-preferences-dvz9qp0h.pdf

Inflammatory Bowel Disease Patients’ Treatment Preferences Using a Discrete Choice Experiment Technique: The InPuT Study

BACKGROUND: Compliance with food-based dietary guidelines has been known delivered positive effect on nutrition and public health.
AIM: This study aimed to assess the implementation of balanced nutrition using piring makanku on food consumption of orphanage children.
METHODS: This study design was quasi-experimental with a non-random pretest-posttest with a control group. A total of 30 samples in each group were selected purposively, the treatment group was given nutrition education and piring makanku while the control group was given nutrition education only. Data collected include subject characteristics, nutritional status, and the use of piring makanku (compliance, practice, and portion acceptability). Statistical analysis used t-test for paired and non-paired groups.
RESULTS: The results showed that there were significant differences in both groups after the intervention. Statistically significant results on food consumption in the treatment group included energy (p = 0.002), protein (p = 0.000), and carbohydrate (p = 0.024), whereas in the control group statistically significant on protein (p = 0.002) and fat (p = 0.005). Moreover, there were no significant differences between study groups after the intervention, while there was a significant difference in mean scores of protein and fat intake between groups after the intervention.
CONCLUSION: It was concluded that the two forms of intervention in this study had almost the same effect on the subject’s consumption, except for protein and fat intake. As a vulnerable group, children of orphanages need to pay attention to their nutritional and health conditions. In addition, campaign of isi piringku using piring makanku needs to be made in the form of lunch boxes to school.

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The Implementation of Balanced Nutrition Using “Piring Makanku” on Food Consumption of Orphanage Children in Makassar City

Ulcerative colitis is a chronic inflammatory disease affecting the colon, and its incidence is rising worldwide. The pathogenesis is multifactorial, involving genetic predisposition, epithelial barrier defects, dysregulated immune responses, and environmental factors. Patients with ulcerative colitis have mucosal inflammation starting in the rectum that can extend continuously to proximal segments of the colon. Ulcerative colitis usually presents with bloody diarrhoea and is diagnosed by colonoscopy and histological findings. The aim of management is to induce and then maintain remission, defined as resolution of symptoms and endoscopic healing. Some patients can require colectomy for medically refractory disease or to treat colonic neoplasia. There are multiple classes of drugs that are available and are used based on the clinical severity of the disease. For mild‑to‑moderate disease, oral or rectal formulations of 5‑aminosalicylic acid are used. Oral 5‑ASA is an established treatment for ulcerative colitis and the current standard of care for most patients requiring long‑term maintenance treatment throughout their lives. However, adherence rates — especially in patients in remission — remain low. It is now becoming relevant to find tools that improve patient adherence to treatment, as it has been found that multiple dosing is a predictor of non‑compliance in IBD and is related to a significantly increased risk of ulcerative colitis. Dosing of 5‑АSA once a day has similar efficacy to divided doses and could increase adherence. Asacol consists of a pellet of 5‑АSA destined for release in the terminal ileum or colon due to a coating known as EudragitS, a resin that dissolves at a pH greater than 7. Asacol is an effective and well‑tolerated initial therapy in patients with mildly to moderately active ulcerative colitis.

Treatment of ulcerative colitis: focus on the adherence to therapy

Background Pharmaceutical treatment prescribed according to patient preference for a formulation may have a positive impact on adherence to treatment and consequently on treatment outcomes. Aim This study aimed at understanding patient preference for pharmaceutical formulations and attributes that trigger patient preference and physician perception of patient preference. Methods Between August and September 2017, gastroenterologists and patients with mild to moderate ulcerative colitis from France, Germany, Spain, and the UK participated in an online survey. The investigation was exploratory in nature, and descriptive results are presented. Results Patient (n = 380) preference appears to be driven by the appearance (format, shape, size, and color - 44%), number of units per administration (39%), and number of administrations per day (17%). Gastroenterologist (n = 159) preference is instead driven by the number of administrations per day (55%), number of units per day (26%), and tablet size (19%). Overall, 254 (67%) patients preferred a tablet formulation, 111 (29%) preferred granules, and 15 (4%) other formulations. According to gastroenterologist perception of patient preference, only 49% of patients prefer tablets, 38% prefer granules, and 13% have no preference. After switching from granules to tablets, 25% patients expressed negative feelings for granules. However, after switching from tablets to granules, 44% of patients still have positive perceptions of tablets. Among patients receiving tablets (n = 255), 18 (7%) perceived their treatment to be not at all effective versus 16 (13%) patients receiving granules (n = 125). A similar proportion of patients in the two groups perceived their treatment as extremely effective (48 vs. 46%, respectively). Conclusions Patients generally prefer tablets. Patient and gastroenterologist perception of patient preference for different oral drug formulations is triggered by the same attributes but with inverse importance. To improve adherence, patients should be involved in the choice of the treatment formulation.

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Patient Preference and Physician Perceptions of Patient Preference for Oral Pharmaceutical Formulations: Results from a Real-Life Survey

POSB353 Quality of Life and Symptom Burden of Paroxysmal Nocturnal Hemoglobinuria Among Patients Receiving C5 Inhibitors in the United States and Europe

Perrine Le Calvé

Papers

Patient Preference and Physician Perceptions of Patient Preference for Oral Pharmaceutical Formulations: Results from a Real-Life Survey

POSB353 Quality of Life and Symptom Burden of Paroxysmal Nocturnal Hemoglobinuria Among Patients Receiving C5 Inhibitors in the United States and Europe

HSD79 Physicians’ Experience and Perceptions of Tetrabenazine for the Treatment of Tardive Dyskinesia

HSD102 Physicians’ Experience and Perceptions of Tetrabenazine for the Treatment of Huntington Disease-Related Chorea