Background: Barrett's oesophagus affects patients' quality of life and may be a psychological burden due to the threat of developing an oesophageal adenocarcinoma. Objective: Assessing the oesophageal adenocarcinoma risk perceived by non-dysplastic Barrett's oesophagus patients and its association with quality of life, illness perception and reflux symptoms. Methods: This cross-sectional questionnaire study included 158 Barrett's oesophagus non-dysplastic patients aged 18-75 years. Based on their annual and lifetime oesophageal adenocarcinoma risk estimations measured with the Magnifier Scale, patients were classified as overestimating or underestimating. Associations between the groups where assed on demographics, reflux symptoms and results of the Outcomes Study Short-Form-36 (SF-36) and the Brief Illness Perception Questionnaire (B-IPQ). Results: The annual oesophageal adenocarcinoma risk was overestimated by 41%. Overestimating patients had lower means on the SF-36 domains: bodily pain (annual p ¼ 0.007 and lifetime p ¼ 0.014), general health (annual p ¼ 0.011 and lifetime p ¼ 0.014), vitality (annual p ¼ 0.030), physical functioning (lifetime p ¼ 0.028), worse illness perception (total score p ¼ 0.001) and significantly more reflux symptoms. Conclusions: Overestimation of the oesophageal adenocarcinoma risk by Barrett's oesophagus patients was associated with decreased quality of life and worse illness perceptions, which is most likely caused by symptoms of dyspepsia and reflux. These symptoms should be adequately treated, and patients may be in need of extra support and specific information about their oesophageal adenocarcinoma risk.
Background Health‐related Quality of life (HRQoL) in patients with Barrett's esophagus (BE), a premalignant condition, may be influenced by gastroesophageal reflux disease (GERD) symptoms and the risk of developing esophageal adenocarcinoma. Methods We aim to investigate HRQoL in non‐dysplastic Barrett Esophagus (NDBE) patients, identify factors associated with a negative illness perception of the diagnosis BE and compare outcomes between patients treated in a specialized BE center with non‐expert centers. In this multi‐center cross‐sectional study, HRQoL of NDBE patients were assessed using the Short Form 36, Hospital Anxiety and Depression Scale, Cancer worry Scale, and Reflux Disease Questionnaire. A multivariable, linear regression analysis was conducted to assess factors associated with illness perception (Illness perception scale) of the BE diagnosis. Outcome parameters of patients from expert centers were compared to non‐expert centers. Results A total of 859 NDBE patients (mean age 63.6% and 74.5% male), of which 640 from BE expert centers were included. BE patients scored similar or higher means (i.e. better) on generic HRQoL in comparison with a Dutch norm population. The multivariable regression model showed that cancer worry, GERD symptoms, signs of anxiety and depression, and female gender were associated with a negative illness perception of BE. GERD symptoms were reported in the minority (22.4%) of BE patients. Levels of anxiety symptoms were comparable to a Dutch norm population (mean 3.7 vs. 3.9 p 0.183) and lower for depression symptoms (mean 6.8 vs. 7.6 p < 0.001). Overall, there were no differences found on outcomes between expert centers and non‐expert centers. Conclusion NDBE patients scored similar or better on generic HRQoL, anxiety and depression than an age and gender matched norm population. The presence of cancer worry, gastrointestinal symptoms, anxiety and depression, and female gender are factors associated with a negative illness perception of the diagnosis BE.
Conflicting data about inflammatory bowel disease [IBD] and immunosuppressants are risk factors for severe COVID-19 confuse patients and healthcare providers. Clinical reports with longer follow-up are lacking. A retrospective search was performed for severe COVID-19 (hospital admission and/or mortality) one year after the SARS-CoV-2 outbreak in an IBD cohort from one of the most affected Dutch regions. Cohort characteristics were explored by value-based healthcare data, including immunotherapy. COVID-19 cases were detected by ICD-10 codes and further examined for IBD determinants (including medication) and COVID-19 characteristics (intensive care admission, respiratory support, treatment, mortality). The national mortality register was consulted, ensuring detection of patients that died without admission. Results were compared with regional and national general population registries. The IBD cohort consisted of 1453 patients (51% Crohn’s disease, 54% women, 39.9% using immunotherapy), including children. Biologics use increased during the study. Eight cases (0.55%) had severe COVID-19: seven were hospitalized (0.48%, 95% confidence interval [CI] 0.21–1.04), and two died (0.14%, CI 0.002–0.55). Six patients had comorbidity, one used immunotherapy, and four had no medication. Both deceased patients were older than 80 years, had severe comorbidity, but used no immunotherapy. Hospitalization occurred significantly more in the IBD cohort than regionally (0.18%, CI 0.17–0.19, p = 0.015), but not significantly more than nationally (0.28%, CI 0.279–0.284). Mortality was equal in IBD patients, regionally (0.11%, CI 0.10–0.12) and nationally (0.13%, CI 0.125–0.128). Neither IBD nor immunosuppressants are associated with increased risks of severe COVID-19 in an observational study with one-year follow-up.
Purpose Barrett esophagus (BE) is associated with a significant decrease of health-related quality of life (HRQoL). Too often, patient-reported outcome measures (PROMs) are applied without considering what they measure and for which purposes they are suitable. With this systematic review, we provide researchers and physicians with an overview of all the instruments previously used for measuring HRQoL in BE patients and which PROMs are most appropriate from the patient’s perspective. Methods A comprehensive search was performed to identify all PROMs used for measuring HRQoL in BE patients, to identify factors influencing HRQoL according to BE patients, and to evaluate each PROM from a patients’ perspective. Results Among the 27 studies, a total of 32 different HRQoL instruments were identified. None of these instruments were designed or validated for use in BE patients. Four qualitative studies were identified exploring factors influencing HRQoL in the perceptions of BE patients. These factors included fear of cancer, anxiety, trust in physician, sense of control, uncertainty, worry, burden of endoscopy, knowledge and understanding, gastrointestinal symptoms, sleeping difficulties, diet and lifestyle, use of medication, and support of family and friends. Conclusion None of the quantitative studies measuring HRQoL in BE patients sufficiently reflected the perceptions of HRQoL in BE patients. Only gastrointestinal symptoms and anxiety were addressed in the majority of the studies. For the selection of PROMs, we encourage physicians and researchers measuring HRQoL to choose their PROMs from a patient perspective and not strictly based on health professionals’ definitions of what is relevant.
Biologic treatment withdrawal in inflammatory bowel disease patients with prolonged remission may lead to benefits but also increases the risk of getting a relapse. The risk of relapse after biologic withdrawal according to the Dutch STOP-criteria is still unknown. The aim of this study was to compare the cumulative incidence of relapse in inflammatory bowel disease patients that discontinued biologic therapy after applying the STOP-criteria with patients who maintained biologic therapy. We performed a mono-centre, observational, retrospective study by evaluating relapse risk of patients treated with biologic agents who discontinued this treatment according to the STOP-criteria (STOP-group) compared to patients who were in remission for more than 3 years before withdrawal (LATERSTOP-group) and patients who continued their biologic (MAINTAIN-group). The cumulative risk was calculated at 12 and 36 months using the log-rank test to compare Kaplan–Meier curves. Eighty-three of 398 patients that used biologics between 1 January 2010 and 1 January 2020 were included. The cumulative relapse incidences in the STOP-group and the LATERSTOP-group were, respectively, 29% and 42% at 12 months and 47% versus 58% at 36 months. Patients in the MAINTAIN-group showed a lower ( p = 0.03) cumulative relapse incidence of 10% at 12 months and 18% at 36 months. Patients who discontinued their biologic therapy according to the STOP-criteria had significantly more relapses at 12 and 36 months than patients who maintained biologic treatment.
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