Background and Aims In order to provide high-quality care, providers need to understand their patients’ goals and concerns. This study aims to identify and predict the goals and concerns prioritized by patients with inflammatory bowel disease (IBD) in the outpatient setting. Methods Mixed-methods analysis was performed to identify the types, frequencies, and predictors of IBD patients’ goals and concerns using 4,873 surveys collected between 2016-2019 at 25 gastroenterology clinics across the United States participating in the Crohn’s & Colitis Foundation’s IBD Qorus Learning Health System. Results Patients with IBD most often prioritized goals and concerns related to symptoms/disease activity (50%) and clinical course/management (20%), while psychosocial/quality of life (12%) and medication (6%) concerns were less frequent. Females (OR 22.1, 95% CI 5.3-91.5) and patients in clinical remission (OR 2.2, 95% CI 1.2-4.1) were more likely to prioritize family planning. Patients >60 years old (OR 3.1, 95% CI 1.5-6.5) and patients with active disease (OR 3.2, 95% CI 1.4-7.6) were more often concerned about traveling. Smokers were more often concerned about nutrition (OR 4.2, 95% CI 1.9-9.2). Surgery was more often a concern of patients with perianal Crohn’s disease (OR 2.1, 95% CI 1.2-3.5), active disease (OR 1.9, 95% CI 1.1-3.4) and those with recent hospitalizations (OR 2.5, 95% CI 1.2-5.4). Conclusions IBD patients prioritized the remission of physical symptoms as treatment goals and that they were less frequently concerned about medications and their side effects. Patients’ demographics, IBD characteristics, and healthcare utilization patterns can predict specific types of concerns/goals.
Background Inflammatory bowel disease (IBD) care is beset with substantial practice variation. Learning health systems (LHS) aim to learn from this variation and improve quality of care by sharing feedback and improvement strategies within the LHS. Obtaining accurate information on outcomes and quality of care is a priority for LHS, which often includes patients’ self-reported data. While prior work has shown that patients can accurately report their diagnosis and surgical history, little is known about their ability to self-report recent healthcare utilization, medication use, and vaccination status. Methods We compared patient self-reported data within the IBD Qorus LHS regarding recent IBD-related emergency department (ED) visits, hospitalizations, computerized tomography (CT) scans, corticosteroid use, opioid use, influenza vaccinations and pneumococcal vaccinations with electronic health record (EHR) data. Results We compared 328 patient self-reports to data extracted from the EHR. Sensitivity was moderate-to-high for ED visits, hospitalizations, and CT scans (76%, 87%, and 87%, respectively), sensitivity was lower for medication use with 71% sensitivity for corticosteroid use and only 50% sensitivity for self-reported use of opioids. Vaccinations were reported with high sensitivity, but overall agreement was low as many patients reported vaccinations that were not registered in the EHR. Conclusions Self-reported IBD-related ED visits, hospitalizations, and CT scans are reported with high sensitivity and accuracy. Medication use, and in particular opioid use, is less reliably reported. Vaccination self-report is likely more accurate than EHR data as many vaccinations are not accurately registered.
ObjectiveTo understand the perceptions of the impact of the COVID-19 pandemic on healthcare communication with family caregivers.DesignNationally representative survey.SettingUSA (national).Participants340 family caregivers, demographically representative of the US population by race/ethnicity.Primary outcome measuresCommunication outcomes (feeling involved by the provider, feeling involved by the care recipient, feeling more encouraged to be involved in care, feeling contributory to discussions, feeling questions are being answered), behavioural/wellness outcomes (feeling anxious, feeling isolated, feeling it is easier to attend the clinic visit), and desire to continue using telemedicine.ResultsHaving less than a college degree was associated with decreased odds of feeling involved by the provider (OR 0.46; 95% CI 0.26 to 0.83; p=0.01), feeling involved by the care recipient (OR 0.44; 95% CI 0.24 to 0.79; p=0.01), feeling more encouraged to be involved in care (OR 0.49; 95% CI 0.27 to 0.86; p=0.01), feeling like they contribute to discussions (OR 0.45; 95% CI 0.25 to 0.82; p=0.01) and feeling like their questions are being answered (OR 0.33; 95% CI 0.18 to 0.60; p<0.001).ConclusionIn our sample, the shift to telemedicine during COVID-19 was well received but caregivers of low educational attainment reported poorer health communication, and a greater proportion of black/African American and Hispanic caregivers reported a desire to return to in-person visits. There is an opportunity to improve health systems and increase equity as telemedicine becomes more widespread.
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